Thursday, 27 September 2012

Naming and shaming Fred the arthritis: Responsibility - a job for life

Naming and shaming Fred the arthritis: Responsibility - a job for life: What we learn at the knee, stays with us for life. This homily I find to be very true and it was so for me. My father was somewhat of a wo...

Responsibility - a job for life

What we learn at the knee, stays with us for life.

This homily I find to be very true and it was so for me. My father was somewhat of a workaholic and as a child he hardly seemed to be around. He had a day job, several, over the years, and he worked in the evenings too, to supplement the family income. My mother returned to work after the birth of both me and my brother so effectively my grandmother raised us.

Neither of my parents could see the point of me having much of an education with me being a girl, whatever career I had in mind. Learn to read, write and add up was all that was important, then leave school and get a job; any job.

The ethic of work is a good one but surely there is more to it than that. In my working life I had jobs that I hated and ones that interested me, up to a point. But never did I get a job that truly fulfilled me. I suppose the job that I liked the most was working in a shop as I am somewhat of a people person and it taught me a great deal. Dealing with the public suited me. I enjoyed the interaction with people, getting to know regulars and being a friendly face to the elderly as you were possibly the only person they spoke to all day.

Of course this wasn't the job I aspired to but being denied the encouragement and opportunity to further my education I had little choice. My school, in those days, didn't encourage it's girls to follow their dreams. If you were not in the top class you were destined for  shop work, a minor office job or a factory. The problem being, you began to believe you were not suited to anything else. Unless you had the support and role model of a parent who had 'bettered themselves' you saw what you were told was your place in society.

It was later that I realised I could have had different choices but these had been unknown to me at the time and no one advised me differently. By then I was married and had two young children. Money was tight and time too. It is easy to look back and think of what might have been but that doesn't do you or anyone else any good.

I would encourage parents to be good role models for their children in all aspects of their lives and set a good work ethic for them. In the present climate it isn't easy, unemployment is high as is redundancy. In that position there is still the opportunity to show that work is still a priority as is sourcing it. To show young people the resources available in finding that all important job is as vital as showing the ethics of going to work and earning money. We shouldn't forget the part that Saturday jobs and volunteering plays either. I encouraged my daughters to take up part jobs while at school and college and both became volunteers with the Guiding Association. Skills learnt at groups such as this are relevant to future employment and in life generally. My elder daughter found that out when she was in Norway as part of her teacher training programme. On an expedition she was the only one who could light a fire in the middle of a snowy forest with damp wood! Yes, as a Guide and then a Guide Leader she had the skill to get a fire going to heat water for a drink and to warm themselves. Also her involvement in the movement sat well on her University application form to start her teacher training.

But does the responsibility stop there?

Having the job is one thing but how you can manage on that pay you earn is another. Getting that pay packet or salary is exciting and a young person can become seduced by money in their pocket.

Parents can help their child set up a bank account and a budget, teach them to pay their way by explaining what needs to be paid for each month. Outgoings such as rent or mortgage, gas electricity, water, taxes, food, petrol or diesel and sundries such as savings and pensions are a priority of life. Children never think of cost, put your clothes in the linen basket dirty and get them back clean and ironed with no thought of what is involved. Electricity, water, washing powder all have to be paid for. On a cold, wet day to be snug and dry at home is idyllic but that central heating isn't free and neither is the house.

I got a shock when I had to start buying my own clothes! The cost of underwear, tights, tops, skirts, coats and most of all shoes was horrendous. Previously my mother had paid and that was it now suddenly I had to start choosing wisely. Food appeared on my plate as if by magic, I ate it with little or no thought about what it cost to put it there. When I started working in the delicatessen department of  a department store I began to realise the relevance of prices. I think it was when people asked for a quarter of this or that and the weight was a little over they said they couldn't afford that much. I began by thinking it was only a few pence but by listening I soon realised that those few pence added up over a week and had a great relevance on their choices of food, heat or accommodation.

When I married we were both working and between us we set a budget for the week. Menu planning was also high on the agenda so we shopped once a week at the supermarket for ease and stuck to the plan which in those days was easy to do as prices tended to stay stable and not change from week to week.

After our first daughter was born I vowed to shop more locally and got to know the local butcher, greengrocer and corner shop owner. We still did a bigger shop for things like washing powder and washing up liquid the heavier items but mostly our food items were fresh and local as I believed you got better value for money. I found the corner shop  to be especially useful and once a week I would buy bacon pieces (pieces left over from the bacon he sliced)  from him to make a bacon pudding or put in a casserole. My mother was horrified! I couldn't understand why as the bacon was meaty and had hardly any fat, I got a cheap meal and it saved me cutting it up. I thought I was being resourceful!

The principles of being adaptable rate highly and both parents and teachers have the responsibility of being the role models for future generations. Work isn't just 9 to 5 with a pay packet at the end; it is a life style. It means responsibility, encouragement, endurance, decision making, budgeting, negotiation, research, data collecting, making comparisions and putting in place the steps to build foundations for future generations to follow.

Parenthood is a gift and no one has the absolute right to become a parent, but if you do become a parent you take on the biggest job you could ever attain. I believe I was the luckiest woman alive to become a parent; twice. I took the gift I was given and vowed to nurture my children by giving them the best start in life I could with the tools they needed to make their way in life.

Responsibility doesn't end when a child becomes an adult as once they start on their own road in life the opportunities to continue the support and encouragement remain. You cannot relinquish your role in their lives as how you deal with the pressures of family life, work, job hunting, retirement and health worries has a deep impact on them. From a small child who you teach to budget their pocket money to an adult person you discuss mortgages and loans with, you are developping the potential of a responsible citizen.

Sunday, 23 September 2012

Overcoming isolation

Ever since my computer gave up I have felt somewhat isolated with regards contacting friends and family.

I have been sharing my husband's computer but have to restrict the time I have it and therefore what I can achieve in the time allowed. I had to stop playing games on Facebook and just stop by to say hello to people and wish happy birthdays etc. My Blog had to stop as did my story writing.

I also felt a degree of being left alone regards my arthritis as I have many friends that I made through forums, these are people who understand what people with rheumatoid arthritis go through because they experience it everyday themselves. Having these contacts is vital as some people have no one to share the good times as well as the bad with. They don't have the support that others have from family and friends who, instead of giving the moral and emotional support needed, seem to not accept that the effects of rheumatoid arthritis can be so devastating.

I am extremely lucky that my family are supportive and, whilst not knowing first hand what I experience every day they see the effects on my body and emotions. I have had a bad year with regards my arthritis but felt I was coping with the support of my doctors. However, the beginning of August I had a really bad experience when I had trouble walking and using my left hand, also my speech was a huge problem. Eventually my GP came to the house and he gave me some strong medication to help with pain and increased my steroids which I hate. He sent me for a scan, which came back negative but he then made an appointment for me to see a neurologist and he arranged for a physiotherapist to call at the house.

My speech is still a problem and I get tired but I feel with my physiotherapist's help I am getting good results with regards my left side. The neurologist sent me for an MRI scan and arranged to see me immediately after the scan. He told me I have to go into hospital for further tests as he can see lesions on the brain.

I have spoken to my dear friends on 'the net' and no one gives me advice as in what I should do or what it might be but are there shoulder to shoulder with me. They virtually hold my hand, give me virtual hugs, are shoulders to cry on and most of all just listen.

I felt so lost without my computer and became reliant on posting on Facebook, Twitter (occasionally), a disability site I belong to, sending texts and e-mails on my phone and Kindle. Whilst this is not absolutely ideal I am thankful that I live in a time when we have access to such technology. When I think of the first mobiles which looked like a brick the idea of being able to talk to someone else while on the move was a fantastic innovation. With progress we were able to send text messages so people could reply at their leisure. Sending photographs drove the use of mobile phones even further than ever expected. Then we became connected to the internet via our phones. Searching became as easy as sending a text. Bringing up a map to search for a fast food outlet or restaurant saved the never ending driving round to look for a meal. Going on holiday and keeping appointments is easier as the phone has alarm, calendar with day to day agenda, camera, television, music, film, videos and so much more.

From a huge brick to so much more on a piece of technology a fraction of the size in just a few decades.

Being not able to have access to the technology of today but also having the ability to use it makes me extremely privileged. I remember my grandmother having a fear of using the telephone at my parents' house. She never had a phone and even her television was a black and white one till the end. She had no central heating, an outside toilet, no car and no fridge or freezer. This was in the late 70s.

At the age I am now my grandmother lived a fairly basic life. Her kitchen was a scullery, an old gas cooker, a large butler sink, a mangle, a safe keeper for cheese etc. Her only toilet was outside in the garden and she had no bath. She also had a gorgeous old black range, something I would love myself, in her back room. Here grandad kept his shoe repair kit which included a cast iron three footed last, leather, nails etc. He repaired all our footwear as long as they had leather soles and heels. Her front room or best room, was where she looked after me when I was little. We listened to the radio especially listen with mother and when she got a television Watch with Mother. Watching television was rationed except when the football results came on and when boxing was on as grandad loved those!

I am convinced gran and grandad were content. They owned their own home, were happy there, we spent Christmases there and although she didn't have the range of things we take for granted today what more could they have wanted I wonder.

She essentially shopped locally with two corner shops just a few steps away. A short walk to a butcher and a pub. The Prudential man came to collect for the savings club every week, the milkman called everyday, the rag and bone man with his horse and cart, the knife sharpener who had a whetstone on a barrow and it certainly fascinated the children watching sparks fly, the chimney sweep called when required and made an excellent job of the chimney leaving a fairly clean front room, the pig man called for the swill left out in pig bins and I remember Sunday evenings the Winkle Man came round selling winkles, whelks and cockles eaten with the use of a pin to prise the shellfish out of their shells and served with bread and butter.

She would shop further afield for clothes although for her a good pair of shoes (if your feet are comfy the rest of you is comfy!), a good corset (the foundation of the rest of your clothes) with lisle stockings, and a good coat. To my gran these were the essentials, she never went without her corset at any time of the year. During the day she wore an old fashioned wrap around apron over her clothes.

The street where she and we lived had a street outing every year and they were jolly affairs! She never went far for holidays, later in life she went on breaks with a club but not outside the UK.

So what do we have that she and grandad have that makes our lives so much better? Yes we can order our shopping from our computer or mobile and have it delivered to our houses but don't we miss out on interacting with others that way. I have used it when ill but not often. We can shop from catalogues or web sites but where is the joy of trying on clothes that way? We can do bank transactions on line so no queuing at the bank or meeting other people. You can telephone, text or send an e-mail instead of walking to visit a friend or relative. I remember going to tea with family or friends on  a Sunday or sharing a meal midweek now everyone is too busy to spare an hour or two to get together.

I have cooker, microwave, steamer, food processor, bread maker, fridge, freezer, washing machine, tumble dryer, television, computer, printer, car, central heating, wood burners, wet room, bathroom, Kindle, mobile phone, house phone, DVD player. But could I live without them? I think if I really had to many of them I could live without, as a child I did. I do however have things that I think would have really helped in my grandparents' lives. I have a home diabetes checker, a sleep apnea machine, an electric wheelchair, an armchair to help me sit and stand up, medication to help me in daily life.  But compared to the other list it is short. They walked or took a bus where they wanted to go, wrote hand written letters, went out and met people daily.

Grandma cooked everything from scratch no frozen pastry, frozen vegetables, she made fresh pastry and picked her vegetables from the garden and later bought from the greengrocer, meat bought from the butcher, fish from the fishmonger. I like to do the same except I make large amounts and put some into the freezer for a later date. Our car is essential nowadays, we live in a remote area with no public transport. The village has a small shop, a baker, a post office, a hairdresser, two cafés and two restaurants. Also a number of farms. To get to the doctor, dentist or medical appointments it requires a car to get you around. It is possible to take a taxi but that is expensive. Supermarkets are at least 20 minutes drive away and although they run a system where they will take your order if you hand it in and then prepare it you have to go and collect it they don't deliver that hasn't arrived here yet. We order the oil for the central heating and that is delivered as is the wood for our two wood burners.

I like to meet people and for that reason I like to get out of the house. I have my friends on the internet but people I meet shopping or visiting an event is precious. There is a place in my life for both friends and family I see regularly as well as people I have met through Facebook, my disability site and Twitter. The people are important in different ways. Sometimes it is easier to talk to my online friends than to those I see often.  I have also found that  people come into your life for a particular reason and I make the most of that as it is meant to be.

Knowing I have access to the technology available is reassuring but I cannot become reliant on it. I know it is  possible to live a life free of this technology but it isn't possible to live a life free of good friends and family and I for one will embrace the means I have to keep in contact .


Tuesday, 29 May 2012

All mankind loves a lover - Ralph Waldo Emerson

Love is four small letters but it holds a big question; what is love?

Is loving the same as being in love?  That is a difficult one. Love is a word that is bandied about covering many facets. You can love your parents, your partner, your children, your friends, your home, your car, your new phone, your job. But, apart from your partner you are not going to be in love with the others.

How do you differentiate between love and being in love? I loved my parents and grandparents, I never queried whether I did or not and I felt loved in return. We didn't have much money but I never went without. I had warm clothes in winter and lighter clothes in summer. I had stout shoes in winter and sandals in summer. I had toys, not the mountains that children get now and not the electronic toys either. It took a lot for my parents to save up in a club for Christmas, I remember getting two big china dolls one Christmas. One was a blond, pink doll the other a black doll with black hair; they came with a twin pram, it must have cost my parents a lot of money that year. I don't equate my love for my parents with what they bought me that would be too shallow and that is not my style. I was fed well with plain home cooking, our house was warm, albeit that we had no bathroom we were clean we bathed in a tin bath in front of the fire. My parents had worked since they left school and worked into their 70s. After I married and had a family of my own I had a better relationship with my parents and the balance of love shifted a bit. I felt more protective of them as they grew older. After my father died I felt a rush of love that was difficult to explain. I realised that he had loved me but in his own way. I said I didn't evaluate my love for my parents on what I was given and that is true, my father loved me but he was undemonstrative. He hadn't received love as a child and he found it difficult to express it. After he died he left a wish for a requiem mass and at the service the priest said that my father had told everyone who would listen how proud he was of me, my brother and my daughters. But why did he not tell us? My daughters asked. I believe it was because he didn't know how. Children learn to love as they learn to talk, walk, feed themselves. It is through copying, watching, learning - from their parents and others around them who care for them. If a child isn't shown love, how can they express love? They won't know what it is. Children need to feel safe and loved, I felt that as I had my mother and her parents as well as great aunts and uncles to show me what it was I was exposed to family love. My father read to me, we went out in a family, he provided for us and that was love in the way he could express it but not the hugs and kisses love that my husband and I gave our daughters.

When I became a grandmother I never thought I would feel the surge of love I felt, it was just the sort of love I felt after the birth of my daughters. When I saw my first grandchild, a girl, I couldn't believe how beautiful she was. She was perfect and my love was so strong. That feeling was there after my second grandchild, a boy was born. He was perfect too, like his sister his tiny hands, ears, feet, nose, mouth and eyes were all  perfect and evoked the feelings I recognised as love. My third grandchild, another boy, was premature but still perfect in every way. Unfortunately we couldn't see him as soon after birth as his sister and brother but the wait was worth it. I held him and my heart overflowed. My fourth and fifth grandchildren are twins - a boy and a girl. Like their cousin they were premature and they looked like tiny porcelain dolls. I saw them, but could not touch them, in hospital but only held them when they got home. I loved them from the start and I felt so protective of them just as I did with their cousins. I felt so proud of my daughters for giving me such beautiful grandchildren. Obviously I am not the only grandmother who is proud of her grandchildren and who loves them so much but they are my grandchildren, part of me and love for them is part of me too.

I had and still have close friends who I loved and do love. There are two friends with whom I have been close to for many years and we are like sisters. Both my friends are only children and I never had a sister so I feel they are the people I can talk to and confide in. One friend lives in Australia and the other in the UK. I live in France so we don't meet up but we e-mail, telephone and keep in contact as much as is possible. The love is for someone who accepts you as you are and doesn't expect any more than you can give. I have experienced the highs and lows of their lives, been through the raising of our families, experienced the joys of adolescence from our children and the problems teenagers bring. We talked, cried, laughed, and sympathised with the agonies we went through with exams and university. We cried with pride at weddings and then when we became grandparents. At times in our lives we need friends who know us so well and who will empathise without being judgemental, will worry about you, care about you. All this is done differently to your family as they are outside of the family whilst still being 'family' to you if not the rest of your immediate family. Family and friends are loved and whilst it is possible to fall out with family and friends there is still an emotional tie to shared lives, the good and the bad.

We can love a house and there are people who have a really deep attachment to what is not just a house but a home especially if it is a place that they have grown up in and the building seems to hold strong memories. At the centre of the attachment is the love felt in childhood that seems to have permeated the very fabric of the building, or it was the place they raised their own family and every room has a story to tell.  Others have no such connection with what is in effect bricks and mortar. They can move with no qualms about leaving and will settle into their new abode very quickly.

So often it is heard when out shopping, ' I just love that dress/shoes/handbag/boots/' I wonder about using 'love' in such a superficial way. Can you really 'love' an inanimate object? Transferring love to objects takes us back to childhood. If a child is not shown love but is placated with 'things' their love will centre on objects rather than developing love for other people. People who develop a love and fascination for surrounding themselves with objects seems very shallow. But I think that it is a crutch they feel they need to lean on or they wouldn't have anything they feel would satisfy their needs. How sad that someone feels the need to fill their lives with objects rather than people. Even sadder are those that continue to fuel that need after they take a partner. Something is missing from their lives when they cannot let go of the passionate love of objects to replace the love of another person. The partnership with the other person is doomed to failure if they are seen only as a means to fund their obsession.


At some point in nearly everyone's life there comes a point when they want to find a life partner. I was very selfconscious  as a young woman and never thought anyone would find me attractive enough to want to go out with me, live with me or marry me. Then I met my now husband. I can't say I loved him or even liked him when we first met but he grew on me! We have been married over 40 years now so it must work. I did come to love him and there was a passion when it developed. The passion of the early days settled into a mature love and we were 'in love' the feeling that some people find elusive. How do you explain being in love? What is that bit of chemistry that is felt that is not present in the above types of love?

I can only describe how it was for me. The wanting to be together all the time, thinking about what we have done or going to do when we are together, hearing their voice in your head, seeing their face, wanting to touch them, feeling a shiver when they touch you, hearing them tell you they love you and seeing the love in their eyes when they look at you. But that isn't all. When you are upset it is being there, holding you, crying with you, helping you to overcome what is upsetting you. Sharing joys as well as sadness, encouraging dreams, giving you freedom of choice and not trying to control you. Trust is the most important ingrediant of a relationship, without trust there is no relationship. Remember this is all reciprocal and cannot work if it is onesided. Many people have someone they refer to as their 'partner' and that term is used whether they are married or not. A partnership only works if the partners work together to make the partnership a success. They need what is called give and take - one person doing all the giving and one doing all the taking - is a recipe for disaster. Sharing the chores, childcare and shopping makes life easier. If you share the boring as well as the fun aspects of life everything can look better.

However much you feel you love and are in love with your spouse or partner there has to be a life outside of that relationship to keep it alive. If you become insulated and cut off other relationships love can die as one partner can become stifled. Obsessive love is dangerous and can lead to tragedy. Keep your friends, see your family and discuss even trivial things with your partner. Keep your love alive by going out, if you have children arrange babysitters either from within your families or join (or set up) a babysitting circle. You don't have to spend lots of money, just going for a walk together can be quite romantic and keeping your love alive need not be a chore. Once it becomes a chore then you need to recognise why and work out together what you need to do to get back on track.

The title of the post - All mankind loves a lover - is a quote by Ralph Waldo Emerson the 19th century American poet, essayist and lecturer who founded the Transcendentilist movement. I interpret this as meaning everyone loves a person in love. Love is universal and if you show love it is an emotion seen and felt by other people. Does love come naturally to a person? Some people, like those who have never been exposed to love may find it doesn't come as easily as perhaps Emerson might have thought.

'Love unifies the scattered ends of life and brings them all together into an intergrated whole.' So said Maharishi Mahesh Yogi who developed  the Transcendental Meditation technique thereby enforcing what Emerson said, that due to the nature of love it is a unifier bringing and holding lives together.

Love is beautiful, it is to be appreciated, shared and should be shown.

 "You live that you may learn to love.
  You love that you may learn to live.
  No other lesson is required of Man."
           The Book of Mirdad.                           









Friday, 18 May 2012

Herb garden in progress

I have wanted a herb garden for so long! Unfortunately we have a small garden and a traditional, as I view it, herb garden is not possible so I have had to improvise.

I bought some plants and seeds and started them growing in small pots. They have now started to get big enough to pot on.

I got my grandchildren to help, they painted some pots for me and a jolly good job they did too. My young grandson got a dibber and made holes in some soil in a long trough and we repotted some herbs into that. He tucked the soil round them and then told everyone they had to be quiet as the bubbas were asleep! We have quite a few small baby plants as he calls them in the garden and he won't let people forget they are there. The paintings here are done by the older two grandchildren.



I wanted to grow lettuce too so my husband bought some guttering which we filled with soil and added the lettuce plants and fitted it at an angle to allow for drainage.


I might not have the fanciest garden but I am happy. I have sage, tarragon, basil, thyme, lemon verbona, parsley, chives, rosemary and some others. Gradually I am building up the variety and I look forward to using them in cooking, teas and as medicinal herbs too.

I think getting the children involved is good as they learn such a lot about where foods come from if they have access to a garden. My children did as children and my younger daughter did her Brownie Guide badge in gardening through having a patch of her own.

It is sad that children think all food comes from a supermarket even in this day and age. Luckily the three grandchildren we have here in France live in a very rural community and they are aware of where food comes from. I know my other two grandchildren in the UK will also grow up knowing too, it is just sad that some children don't have the experiences that teach them that food is grown, harvested, sold and then is taken to shops to sell.

I desperately want to eliminate artificial flavourings and preservatives from my diet and growing my own food as much as possible, allowing for the small space we have. Buying fresh food to make meals from scratch goes a long way to knowing what you are putting in your body. Autoimmune diseases are horrid things and the food you eat, whilst not curing you, can help to eliminate some of the symptoms that are suffered.

Back from the edge

The last few weeks have been rather difficult and I have been on the point of throwing in the towel.

I have developed yet another chest infection. As with the previous ones it started with a sinus infection. I called the doctor and she came out and, after examining me, she prescribed antibiotics, nasal spray and something for my chest as I was coughing a bit.

After almost two weeks I was coughing worst than ever. I saw another doctor and he prescribed antibiotic injections, powders for the cough, some tablets, an extra inhaler and steroid injections. To have the steroid injections I have had to stop the Prednisone tablets I take daily for the rheumatoid arthritis. He also prescribed a course of physiotherapy to help clear the stuff from my lungs. So my day is taken with visits from the nurse to give injections and the physio coming, also I do the exercises throughout the day.

I am hoping that this time the chest infection will clear up. It is annoying that I get the same thing every time and I have to go through antibiotics twice and whatever happens it always goes to my chest. My GP, the nurse and the physio all think that the methotrexate I have for my rheumatoid arthritis is to blame for the chest problems. My rheumatologist however, is reluctant to stop the methotrexate although he is happy to stop the Prednisone and I am decreasing the dose monthly.

I had the methotrexate injection yesterday, Thursday, and as usual today Friday I am exhausted, in pain and very down. I told the nurse and he said that it is very usual to have this and the forums I belong to have posts from people who experience the same symptoms after having the methotrexate. It lasts a couple of days and gradually I get back to normal but I hate Fridays!

I have also been seeing a neurosurgeon with regard back problems that have been with me for years. At the moment he cannot do anything about the problems I have with my upper back/neck area. He has said though that if I have a MRI scan of my lower back he will look at it and say if it is possible to help with that at it is stopping me from walking and doing exercise.

I went this week for the MRI and the doctor at the centre said that it shows bulging and wear and tear. Oh good! So I see the neurosurgeon again in a few weeks for his verdict. Now I know that no one really wants surgery, especially so invasive as back surgery but if it helps me to walk and exercise I am willing to go through it. The alternative is pain and difficulty in sitting, lying and worst of all walking and standing.

I feel that I miss out on doing things with my grandchildren like taking them out unless I have the wheelchair and that restricts the things I can do. I do crafts and cooking, things like that but it isn't the same.

I bought some eucalyptus tea which is supposed to be good for chest complaints and although the taste has to be aquired I am hoping it will work. I also found a remedy for coughs which involves slicing up red onions and letting them seep with sugar, honey or stevia overnight then drinking the syrup; a teaspoon at a time. I haven't got round the doing that but it looks good.

Not feeling up to doing things I haven't kept this up to date  but I hope that the corner has been turned and I can sleep better and find some energy.


Monday, 30 April 2012

Turn up the heat!

Well, the rain seems it will never stop, every time you look out the window the sky is leaking.

Now, anyone who has arthritis will tell you cold, rain and arthritis just do not mix. My hips are so painful and I am pill popping to try and get some relief. A warm house and lovely warm food go a long way to make life more bearable.

We have a wood burner and an open fire which heat the lounge and kitchen which works to a point but the open fire is difficult to keep alight and smokes badly. We have managed, but things took a turn when our son in law came back from his late grandmother's house and offered us her wood burner to replace the open fire. We jumped at the offer and when it arrived we could see it is very solid. The burner is 150 years old and really heavy. We are cleaning it up and arranging for installation. Our son in law said that it took three of them to lift the wood burner and that was after taking out the bits and pieces that are loose inside.  It isn't what some people would call 'pretty' but perhaps I am from the generation that feels as long as it is functional then that is fine!

For us the weather is stopping us getting out in the garden and sorting out the planting. With me, the problem is the wheelchair won't roll over the soggy grass and when it is in position it sinks into the mud. I don't like my husband getting out in the rain, for a period of time anyway, as I can't risk him getting ill. That is for his sake as well as mine. We have seedlings to go out as well as stuff we have kept over the winter. We do have some herbs in pots and are using those for herb salads as well as in cooking but they will need to be replanted soon too. Planting and growing your own produce also saves money, something we are all trying to do nowadays.

We need to get some vegetables planted out very soon or they won't be ready when we need them. Even though we have a small garden we can grow potatoes, beans, onions, lettuce, rhubarb, tomatoes and anything else we can fit i, as well as the herbs. Pots are a brilliant way of growing salads, herbs and tomatoes. I have seen ingenious methods of utilising space and am keen to try them out. Some materials are close to hand or by recycling which of course is encouraged.

I have looked into getting plants, both floral and vegetables, and am in favour of sharing plants between friends and neighbours. We have furnished our gardens many times by cuttings from other people and have given them cuttings in return. Car boot sales are another good place to get plants as many people take cuttings, plants and seeds to sell alongside other goods. We have been lucky enough to grow some plants from seeds or pips in vegetables and fruits we have eaten. It doesn't always work but unless you try!

I am especially keen to get children involved in gardening. Our daughters were always involved in gardening and they were so proud when they saw things they grew on the dinner table. Our grandchildren now show an interest in what is grown. So many children have no idea where food comes from, except the supermarket. I feel they are more likely to eat food they have been involved in producing.

There is nothing more satisfying as planting a seed and watching it grow into something you can pick and incorporate into a meal. In this day and age when people are so busy and use prepackaged goods it is no wonder children are ignorant of where their food originates. I admit that there are times when I am lazy and use a packet or tin  but I try very hard to use fresh food and try to eliminate preservatives and colourings.

People who have illnesses like rheumatoid arthritis and other auto immune diseases react to certain foods and it is imperative to try and keep triggers to a minimum. If I make dishes from scratch, using fresh foods, I feel I am doing my best in reducing the risk of triggering a flare of the arthritis. I know what is in the meal and can monitor much more easily the foods that may trigger a flare.

So come on weather brighten up so we can get out in the garden and make the best use of the space we have available.





Wednesday, 18 April 2012

Taking things for granted - life is a gift

We are given life and for most people how they deal with it and live their lives is pretty much in their own hands. Others face life differently with more complex decisions to make or are made for them.

Because some people are dealt a different hand doesn't mean their lives are any less important or they have less to offer. Their contributions are vital not only to the quality of their lives but to many others as well. I know people who, despite a disability, have gone to university, have found employment and live very productive lives in the community and in their chosen careers. Being disabled should never restrict the ambitions of anyone, in fact they should be encouraged to aim as high as possible.

People who come to disability later in life have huge decisions and choices to make. Depending on the severity of their disability carrying on in employment is the largest decision they have to make. If not being able to continue in their current employment there is the possibility of changing careers with assistance and guidance from advisors and family. Workplaces make adaptations and try as much as possible to enable everyone to be as productive as possible whilst using their skills as part of the workforce.

At home I try very hard to take an active part in running the home, with the help of my husband. Whilst having chores that I can manage there are others that I find difficult and some totally impossible. This is the same in workplaces as everyone has their talents, skills and abilities.

I can chop vegetables and fruit after my husband peels them, I make bread with a bread maker and pastry using a food mixer. I make cakes to the point of asking my husband to pour the mixture in to the tin and put it in the oven. Meals we make together sharing the tasks but I have played a part. I use adaptations to make my part as productive as his. When following recipes I take the lead as explain what is needed and how it should be done so I can take a 'managerial' role.

However, I have to let him sweep the floor and wash it, he hoovers the carpets, does the washing and washing up, cleans the bathroom and the kitchen. I go shopping making a list with him but he sorts out the money as I can't do that. He does the gardening but is getting my gardening equipment sorted out - slowly.

If you aren't disabled think about the things you do everyday. How easy is it for you to sweep the floor and pick up the dust? Can you push that broom and get down to pick up what you have swept up? Can you lift a bucket of water, then mop the floor and lift that bucket to empty it? Can you get out the hoover, move furniture to clean the carpets and then empty the bag? How do you manage in collecting the washing, putting it in the machine, taking it out and hanging it out to dry? Clean the bathroom and the kitchen? Do the gardening? For you perhaps these are not a challenge but if it were different for you how would you cope?

If you couldn't see what was on the floor to sweep or hoover, how would you feel? Could you tell where you dropped that glass could you tell where all the pieces were to clean up? If you were deaf how would you feel not hearing the running water into the bowl or bucket? If you were wheelchair bound how would it be not being able to feel the broom or mop handle? Not being able to lift that bucket or hang out the clothes? What would it be like not to be able to move the furniture and clean the carpets properly? How does it feel not to be able to dust the surfaces or get rid of the cobwebs? Would you be happy not to peel vegetables, make a cake, cook a meal, make a pot of tea? Could you really be happy not contributing to family life or take care of yourself? Would you feel a valuable member of society if you couldn't work, participate in social or leisure activities or provide for your family?

Everything is taken for granted but for people who cannot see themselves as fully paid up members of society because their disability stops them from being useful contributors it is extremely hard. Society marks them as scroungers and cheats. People who 'play' on the pain, discomfort, disease or illness they are suffering. Suffering is the right word because to be in the position where you cannot do basic everyday chores makes you suffer under the onslaught of abuse and ridicule of people who have no idea what you are going through.

There are dedicated people who spend valuable time helping disabled people come to terms with their disability and the problems that come with it, not least of all what is perceived as the stigma foisted on them by ignorant individuals. Professionals also help with the depression that can come with aquiring a disability later in life. This is due in best part to having to change professions or give up work totally. Those who have families to provide for are hardest hit as the threat of losing homes looms high if mortgages cannot be met.

I can empathise with this group of people as I was late to disability. I had worked and had a very active life. Depression is very high amongst disabled people and I was no exception. Add to that guilt and frustration life becomes very difficult. Suicide is high amongst disabled people who come late to disability. They find change almost impossible and for a great part feel isolated.

Deafness in later life is unbearable my father told me. He had poor eyesight all his life due to him being an albino but he also had hearing problems especially in later life. He had a hearing aid but didn't like it as he was unable to cope with the sudden, to him, noises of town centre life. His eye problems meant he wasn't a great reader and had found school work troublesome as a child. The television gave him all the information he felt he needed regarding the news but the sound was so high I am sure all the neighbours could hear it too.

As my father worked from the day he left school until he had his stroke the very thought of not being able to work was extremely difficult for him to accept. Being paralysed upset him greatly and at first he refused to accept that he would never walk again; this I believe made him give up.

His story is just one of many similar ones that arise every day. I have spent a few years refusing to accept changes but I must and so this blog was born. I want to share my life with Fred but I also want those who are not disabled to see what life on the other side of the fence is like.

There are degrees of disability but the areas of sensual disability - sight, hearing, feeling, decision making - are the toughest areas to come to terms with. When you go out clubbing are listen to the music, lift that pint, decide what money you are handing over or chose from a menu, look at your loved ones' faces, lift your child, kneel on the floor or run for the bus, remember there are people who will never get the chance to do some of those things.

So, never take anything for granted accept that what you have is a gift of life so live it to the full and don't waste it.

Monday, 16 April 2012

Can I? Can't I? Taking risks and chancing rejection.

The last few days have been very challenging. Rheumatoid Arthritis flares are painful, tiring and depressing. Add to that the horrid weather and I feel ready to give up. Then once the pain and tiredness start to reduce I feel different and I have started to take an interest in things again.

Today's post brought the latest issue of my Christian magazine that I subscribe to. I am happy to admit I take a religious magazine and I find it covers all the areas that I have interest in. This month gives a menu to feed a family of four for just £3.25 and advice on using the skills you have to possibly start your own business or help those in need.

When I had to give up work following my third stroke I found I was struggling with concentration, co-ordination, memory and confidence. I thought long and hard about what I could do with my life post stroke but knew I would have to work at reclaiming at least part of what I once had. I never expected to be the person I was before and that has been proven to be true, I am me but a different me. I learnt to adapt to life with a wheelchair instead of legs and being reliant on other people but I wanted to be independent and find what I had inside me. I knew I liked to write and to research so I signed up to an online journalism course. I loved it! I carried on with the course even after I moved to France and was able to put a bit of a twist to the course with the French influence. As I worked my way through the course I felt I was gaining in confidence and I was concentrating better. I had to work really hard at it but I was getting so much out of it and when my diploma arrived I was ecstatic!

I wasn't sure what to do with what I had achieved but I carried on writing bits and pieces like stories for my grandchildren. Then I got the opportunity to write for an English newspaper in France and I did that for quite a while. The first time I saw my name in print was fantastic as I had come such a long way. Then I wrote for the internet and that was very interesting as I could write about different things. But when I was diagnosed, eventually, with rheumatoid arthritis not only did a lot of things that I had noticed such as the pain, swelling, tiredness and depression, fall into place but I found I couldn't write so regularly and eventually I had to stop. This has been hard to accept as I had fought back after my stroke and now I was being stopped from doing something I really enjoyed.

Now I wonder if the treatment I am receiving has got me to a point where I can start again? My ten year old granddaughter has commissioned a story which I have started and she is insisting on reading every chapter. I have a few stories for adults in my collection but am not sure about actually doing anything with them. My daughters tell me send them off to magazines but perhaps it is the fear of rejection that stops me. I am continually having ideas and scribbling and as they say I will never know if they just sit there.

I suppose we are all afraid of rejection at various points in our lives. From making friends, to applying for jobs we baulk at putting ourselves in the position where we are 'not what we are looking for.' But if we give up at the first hurdle we will never finish the race so I have promised myself I will submit my stories to magazines and if I am rejected I will pick myself up, dust myself off and try again.

Thursday, 12 April 2012

Setting goals, but does Fred listen?

I have had to have stern words with Fred as I am going through a flare but he just doesn't want to listen. I have even tried to give the flare away but no takers so far.

I have been reading forums and blogs and seen posts about setting goals and racing to finish activities.

I feel setting goals is a good idea as it spurs everyone to achieve. However, it isn't that easy when you have a chronic illness. Many years ago I was introduced to 'pacing' but I have never been able to achieve it. Of course I have learnt the hard way and caused myself distress, pain and acute fatigue; not to mention what I have done to my family, especially my husband by not practising this technique.

Realistic goals are excellent as long as you stick to those goals and not try and overachieve. It would (and has been for me) easy to feel that having achieved the set goals you can push on to do a little more and a little bit more. Setting unrealistic goals mean that you will be rushing to finish and for anyone who has chronic pain, stiffness and tiredness it is the perfect way to set you back and stop further activity for a while.

So what are realistic goals?

For me it is being able to prepare meals, go shopping, visit friends, go on outings. Not overly exciting but for me they are what I want to do while others have different goals but the technique is the same.

If I want or need to go out I need to rest up the day before. Depending on where I have been and how long I have been out I might need to rest up the day after too. To go shopping I have to have a list and plan where I am going, so we have an route we will follow. If I am out too long I get so tired I find it difficult to communicate; this is a legacy of my three strokes. I have to have help with cooking and I turn to my husband or granddaughter to assist me. My husband never complains at chopping onions, garlic and chilli peppers, although I make him wash his hands thoroughly afterwards! My granddaughter makes superb pastry but if I need to do it whilst she is at school I use my food processor; saves time and eliminates pain. I make my own bread and I am so thankful for my bread maker, pop in the ingredients, switch on and let it get on with it. I feel some kitchen aids are a waste of money but my food processor, bread maker and juicer are worth the money.

I use a chair to sit on when I have to stir sauces or ingredients at the cooker and ask my husband to get things from cupboards, the fridge, freezer and cooker. Some people will say I am lazy but just these little changes to my life mean I can achieve goals something very important to people in my position. If I tire myself but being too independent it means I collapse in pain and feeling so tired and I will have to go to bed. I then cannot eat meals with my husband and put extra pressure on him and the rest of the family. This is most unfair to them, I like to watch television with my husband but if I overdo it then we watch the same programme in separate rooms.

To make life easier for my husband I have a medical bed which has a controller to raise the bed and the head to help me sit up. This helps him so he hasn't got to manually lift me. So the goals I set means that my husband isn't too tired and in pain to help me through the day and achieve what I want to do.

Even following these techniques doesn't mean that you can do everything you would like to do. Rheumatoid arthritis can go into remission but equally it can flare out of control. People live with varying degrees of rheumatoid arthritis and this has a bearing on what they can do.

There is no need to rush through chores or activities.
Take regular breaks.
Try to sit while doing household chores like food preparation, ironing, gardening and while attending to food on the cooker.
Use aids or adaptations to help with household chores, in the car, in the bathroom and if necessary in the bedroom.
Lose weight if necessary to avoid strain on joints and hopefully improve mobility.
Make sure you take the medication prescribed and discuss your medication with your rheumatologist if you feel things are not going well.
Make sure the goals you set are realistic.
Don't be afraid to ask for help.
Don't be afraid to accept offers of help.
Rheumatoid Arthritis is an autoimmune disease and affects organs as well as joints, report anything you feel is abnormal for you.

Having written this I now have to make sure I follow my own advice!

Wednesday, 11 April 2012

Should we fight or just go with the flow?

I have had it said to me and read that having rheumatoid arthritis means you are fighting every day.

To a certain extent that is true and it isn't easy being in pain, having stiffness and being so tired all the time. But fighting can be tiring too. The more energy you put into fighting takes away the energy you need just to get through the day.

The energy needed to just get out of bed is an enormous amount then washing or showering if, like me, you can't manage a bath. After that you have to use a bit more energy to get dressed even if you get help. Breakfast for me is porridge which gives me a long lasting energy boost and I eat this with natural yogurt followed by a herbal tea and then my tablets. I cannot rush any of this and need help from my husband to manage them. If I need to go shopping he has to stow the wheelchair in the car, find the shopping bags, draw up a shopping list and get me from the house into the car. By the time I get there and am settled I am exhausted. At our destination he has to find a place to park at our local supermarket as they have had the car park up for a few weeks now and if the two remaining disabled parking places have been taken then he has to park on an end of a row if possible so the chair will get down beside the car. Nothing is more frustrating for me is finding a non disabled driver parked in a disabled space when I am struggling to get into my car when there is insufficient room to get the car near it.

The real battle begins when we get into a shop; any shop. Invariably the aisle I need to get to is blocked by someone stacking the shelves and the wheelchair, with attached trolley, is too large to get by. Then there are the displays dotted around the stores ripe for a wheelchair and trolley to knock down. It is really stressful when you negotiate an aisle only to find you can't get out the other end as a display is parked in your way. And the pillars in the supermarkets near here are erected at the end of aisles too and I can honestly say that it is really, really painful when you have to struggle to negotiate around the pillar into an aisle and you catch the wheels and jar your back, neck and hips. Smaller shops are worse still they are so packed full of stock there is no room for a wheelchair user to get round. But it isn't just wheelchair users people using walkers, crutches and walking sticks are hampered by thoughtless shop keepers and management.

But should we fight to live daily? Or is it better to just look on it as a minor hiccup and laugh it off? I am of the opinion that we should fight for our rights and endeavour to get all shops disabled friendly. But of course this is tiring and a long, gruelling battle. If we just accept things cannot change or will not change then we are giving the impression that we not worth anything better.

When people say that things can't be that bad and really arthritis is just a pain and they get pains too, they are not understanding what people with chronic illnesses and diseases have to cope with all day, every day. Chronic illness is a daily battle to get through the 24 hours of every day and when you get to bed at night pain can and will keep you awake.

Being laid back and accepting whatever life throws at you is a wonderful concept but when you have a daily fight to just live wouldn't it be wonderful if the rest of the world made it just a little bit easier?

Tuesday, 10 April 2012

I am disabled not stupid

Why is that some people associate a wheelchair with what my grand would have called,'lacking'?

I have had my share of the 'does she take sugar?' mentality but the worst culprits seem to be those you would consider as having a certain degree of intellect. Obviously, from the people I have come across, I was wrong.

We recently went to a well known restaurant here in France. I was pleased to see that there was a ramp outside for me to access the building using my wheelchair and I was greeted with a smile. The table we were given had room for the chair and all was well until I wanted to use the WC. The space between the row of tables where we were seated and a raised platform with other tables was so narrow everyone on the lower tables had to move so I could get past in the wheelchair. The toilets were generously sized but there were two sinks in the main area which were level with my shoulders and I am in a normal sized wheelchair supplied by the French version of the NHS. It was ridiculous. Who on earth designed and built this building? Certainly not someone who uses a wheelchair.

I had to attend a hospital appointment in Dijon which is a good hour and a half from us so we decided to do some household shopping while we were there. The supermarket is situated downstairs in a mall and we parked where we always park in the disabled spaces then take the lift down to the supermarket. We don't often use this one as we have found in the past they don't have trollies that attach to the wheelchair. As we only wanted a few items I was prepared to carry the items on my lap. As we neared the supermarket I was amazed to see a battery scooter with a large basket on the front and pointed this out to my husband. I asked the man at the desk for a trolley that attached to the chair. He replied that I could use the scooter. No, that is for people with reduced mobility not for someone who has to use a wheelchair. So they had to send someone to a place inside the supermarket to get the said trolley. Meanwhile I was asked for identification. Why? Because it isn't a normal trolley. Do you ask other people who are not in wheelchairs for identification? No because they use normal trollies. This is pure discrimination. A male non disabled customer said he would be insulted if he was asked for identification on the basis he was in a wheelchair. A man came down from the office to speak to me and the reason they gave for demanding identification from wheelchair users who use this 'special' trolley is because they only have one and I or other disabled people would leave it in the car park and the store would have to retrieve it!

Now, outside the store 'normal' trollies are left all over the place and not returned to the trolley park. Surely these have to be collected? But to me it is the fact that they are discriminating against disabled people because they can't be bothered to supply more trollies to fit on wheelchairs. The other factor is what are they doing with the identification? I am not at all happy about handing over my driving license or other piece of identity, them keeping it and they could take that information and use it without my permission.

I explained that we use four other supermarkets who have trollies to fit on my wheelchair and all they do is ask that we return the trolley to the desk: except one that has six trollies and these are left outside the store where we happily return the one we use. Today one of these stores did ask if I could supply identification but I said you have never asked before so the lady just let us use it. Of course it was returned to them. Except for the store with six trollies the others all have the type doesn't properly fit a standard French NHS wheelchair and keep detaching themselves another problem to tackle!

Surely the directors of these stores could come up with some way of treating disabled people in a dignified and empathetic manner. Disabled people do not really want special treatment just to be treated like everyone else. Saying that I find in France I have to stand up for my rights as the state and commerce leave me with no other options.

A woman parked her car lengthways behind our car which was in a disabled parking bay. We had no way of getting out and we were prepared to scrape her car if necessary to get out but she returned saying she was only going to be in the shop over the road for a few minutes. No you are going to move that car now, I told her. She backed up a bit and we came out and we reversed so she had to keep on reversing too, much to her annoyance, because we needed to go down a road on the other side. She then put her car back in the same place so no other disabled person could park there.

In another supermarket the disabled toilet is kept locked and you have to ask for the key, this is only found out when you get there to use it.

A large shop near us has a disabled checkout and a 'normal checkout' but the disabled one is kept shut (even at Christmas when the shop is busy.) So, as the wheelchair is too wide for the checkout I have to wheel round, open the barrier to the disabled checkout, go around to the other checkout and struggle to pay the cashier. It is on the orders of the management apparently.

At another store there are two disabled checkouts but one is the size of a normal checkout and as it is signposted as a disabled checkout you only find out when you get there and get stuck in the checkout! The problem is the checkouts are all standard except for perhaps one or at the most two checkouts for disabled, expectant mothers and usually less than 10 items. As expectant mothers and people with less than 10 items can use other checkouts I assert my rights as I have no other choice, as I told a woman the other day. The checkout next to use was empty but she wanted to use the less than 10 items checkout.???? I told her she could use the other checkout as she at least had the choice, unlike me. But she insisted she should use this one as it was for 10 items or less; even though the other desk was free!

The local phone company shop which we have had to visit on occasions has a flight of steps up to it. As my husband wants me to speak to them as no one there speaks English two men have to come and lift the chair with me in it up the steps; something I am not happy about. Surely there is something about health and safety? This is a common occurance as doctors' surgeries often have steps up to them and our pharmacy is the same.

When faced with me in a chair people will talk to my husband, who then tells them to talk to me as it is me who is inconvenienced. They act like I am a complete idiot and try and fob me off but I think they expect me to be like the French disabled who don't stand up for their rights. I will argue the point and not be patted on the head and told there is nothing they can do it is just how it is.

When I see the way huge superstores treat their customers I am shocked and livid. More than once I have said 'obviously you don't want my money. Isn't it as good as anyone elses?' Of course they want my money they just won't make it easy for me to use the shop!

The reasons, excuses and lies they trot out are complete rubbish. I told the man the other day that I fight against my disability every day why should I have to fight to do my shopping? It is a natural thing to do like going to a doctor or a pharmacy. Everyone should have the right to go out for a meal, go to the cinema, go to a concert, go to a café or visit a tourist attraction. But the so called management, who invariably have never had to deal with life the way disabled people do, couldn't manage a drinking contest in a brewery.

Monday, 9 April 2012

Pushing myself to the limit and hitting the brick wall

I feel very guilty about not being able to do very much in the home and this means leaving things like hoovering, cleaning, sweeping and the laundry to my husband.

I think the family look on me as being lazy but they say that is not so. I believe them - it is me, I just have huge guilt feelings.

I have spent the last couple of weeks pushing myself to my limit and three days ago I hit the wall. I can prepare meals with my husband's assistance. When making pastry I have to use the food processor as I sadly can no longer mix the flour and fats by hand. I have started making my own bread as I have more confidence in the contents but I now use a bread making machine.

More and more I am making my own dishes from casseroles and curries to bread and cakes. I make biscuits, quiches, pies and tarts. Some days we just make a Thai pot luck meal. This is one of our favourites as Thai curry paste has a lovely taste especially when added to vegetables, Thai soup mix and Satay.

Tajine is another favourite as it has lots of spices that I adore. We actually bought a Tajine dish which we use a great deal. Chicken is a major part of the recipe added to vegetables with added spices.

Cooking is something I feel I can do although I have to ask for some help which for me is extremely hard as I look on asking for help as a sign of weakness and it is very hard to change my mind set. Asking for help to do the hoovering, cleaning and laundry sounds like saying do this, do that - i.e. giving orders. The family say they don't mind helping around the house or doing shopping I just wish I could do it all myself.

Recently my husband read The Spoon Theory. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. He told me that it is what he has been telling me for years, pace myself. He has said that I should do a little then rest but I want to do it all and then of course I suffer.

After feeling I have done so well over the last couple of weeks and accomplishing so much then hitting a brick wall I see that I have to change my mindset and my ways. I will do some chores or cooking for a couple of hours and then rest. I have promised I will ask for help and not expect people to read my mind and know when I need help.

I am not saying that it will work immediately but I think we will get there.

Sunday, 18 March 2012

Medication and other options.

I feel very lucky that I have a good rheumotologist. He is French but speaks very good English so we rub along quite well. He has looked after me since I was diagnosed in summer 2008, it is only the rheumotologist who deals with my RA and prescribes medication. My GP is kept in the loop but he doesn't get involved.

Recently I had to see a neurosurgeon recently as I have a trapped nerve in my upper back and a herniated lumbar disc. It was the rheumotologist who had to refer me. Due to the trapped nerve I haven't been able to discontinue the prednisone steroids I have been taking. I am down to 6mg a day but just can't get off of them. I have been told it is the steroids that has caused the diabetes that I was diagnosed with last October so I am keen to get off of them. I have a scan tomorrow on the upper back/neck region to identify the exact disc involved and then I see the neurosurgeon again to discuss an operation. He has promised me that he will investigate the lumbar region when he has sorted out the trapped nerve. I certainly hope so as the herniated disc in the lumbar region is drastically impeding my mobility.

I really detest taking my RA medication, steroids have given me exaggerated muscles, diabetes, affected discs in my back and methetrexate was possibly involved in pneumonia I had twice. I seem to be prone to sinusitis and this then becomes chest infections. As many people with RA I have more than one auto immune disease and all cause me pain.

I decided to dig out my TENS machine and use that on pain affected areas and I find it very useful. My physiotherapist certainly approved. It is just the electronic waves and no drugs involved. I also use heat pads and cold pads depending on the areas involved.

I get a lot of pain in my hands and wrists so I purchased some fingerless support gloves and found these very effective. For the cold weather I wore them with some fingerless mittens. The ones that worked best came up to my elbows.

Last week we had some beautiful weather. It was warm and sunny and I certainly felt much better but today I am in pain again as it is cool, cloudy and rainy.It makes me depressed too when the weather is like this as I just cannot do much if anything. Last week I was, with my husband's help, actually doing things around the house and cooking. Unfortunately I have had to use my food processor more and more to make pastry as rubbing fats in by hand are just too painful. But it is a little price to pay if I can make meals myself. When I can manage to be a normal housewife it seems to help my pain as I am happier and contented. This I think is as much a relief for the RA as anything. I usually take morphine or paracetamol and codeine for pain but last week I hardly took any! Not so this week, I have needed to take morphine just to sleep.

I have investigated music therapy. I am a lover of music of many forms but especially like classical music, Celtic music and rock.

Apart from rock music I find music soothing to meditate to. However it depends on my mood what I listen to. I like nothing better than singing along to Queen in the car on the way to a hospital or doctor appointment. When I was having physiotherapy with my previous physiotherapist we would play Queen albums whilst he worked on my joints. A little elderly lady was in the waiting room when I came out and she looked horrified! The physio said she probably thought she would have to listen to Queen too while he manipulated her knee!! This evening I am having a wonderful time listening to a Celtic concert whilst typing. Music is used a lot in therapy and proved to be very successful too. It can make you laugh and make you cry. It can cheer you and depress you.

Many people would prefer to use non drug treatments but I understand that it is not totally feasible to just have that treatment, it is however helpful to use these alongside regular prescribed medication. I do not agree with people who say that they have a cure for RA by using non drug treatments and therapies. In fact they make me very angry as no cure has been found for RA and rheumatologists will tell patients they will have to take medication for ever.

One therapy I would like to indulge in is walking. I have the herniated lumbar disc, RA affected hips, knees, ankles and feet and am only able to walk very short distances and that is holding onto my husband's arm or my walker. Normally I use a wheelchair; I have both a manual and electric chair. But I am used to this now and for me to spend a day without pain would be amazing.

I have found that my medical people - doctors, physios and nurses are keen to promote non drug complimentary therapies as long as they are use in conjunction with RA drugs. We all have our favourite means of dealing with pain. For me the heat/cold therapy, music, compression gloves and TENS all work well; however, we all have to find what is best for us and cannot tell anyone else they will certainly benefit from works best for us.

Wednesday, 8 February 2012

Cold plus arthritis equals = pain

We, like everyone else, are experiencing extremely cold conditions. This has resulted in pain, stiffness and tiredness.

The temperatures have been down to minus 20 degrees at night and minus 10 degrees in the day. The mornings have left us without water and heating although until today they have come back on. Today we have no central heating and frozen pipes. Luckily we do have a wood burner and an open fire but this is insufficient to heat the upstairs where our daughter and her family live and they are desperately trying to get the pipes unfrozen. We telephoned several heating engineers but were running out of possibilities until one man took pity on us and is coming soon.

In an effort to keep warm we are drinking cups of tea and eating stews, casseroles and curries! Luckily these are all favourites of the families. We are all wearing layers too, which helps, but doesn't help to ease the pain. I have a thick pair of walking socks I bought many years ago when I was able to go hiking and these have been doing a sterling job.

The heating engineer has been and found a valve had been fitted wrongly. He has rectified the problem and now the heating has come on! Simple and effective.

My daughter is very pleased to have the heating back as she has been trying to potty train her little boy and he was not impressed to be doing so when he felt cold!

Saturday, 4 February 2012

2012 has not started well - understatement!

After a pretty rough 2011 I had hoped 2012 would be better; how stupid could I have been?

After suffering pain in my neck area again I suddenly found it was spreading down through my left shoulder to my elbow, wrist, hand and fingers. Then I started to go numb from my fingers up.

After a particularly difficult day my husband was helping me get ready for bed and the pain was so intense I almost passed out. He got me in the car and took me to hospital. I had a scan then was put on a drip with morphine, steroids and anti inflamtories. A doctor came to see me and said I had a trapped nerve in my neck which was the problem and I need to see a neuro-surgeon.

I was transferred to a hospital nearer home the next day and for ten days was treated with morphine, anti-inflamatories, fitted with a neck collar and had my arm immobilised with straps. I came home with the collar and immobiliser plus morphine and anti-inflamatory drugs.

I saw my rheumotologist a couple of days ago and he examined me then referred me to a neuro-surgeon. He explained that, although it isn't his field, the operation could help the pain from my shoulder to fingers and the numbness but I would still experience pain in my neck. He also said the operation was risky because of where the problem lies. I understand that I need to think about the operation as any operation is intrusive and has it's risks. I have used a wheelchair for around 11years now and am used to this but I do have functioning arms and hands. I can walk albeit slowly and painfully. Having said that I would like to be better than I am now but if I had to wait a very long time before an operation it would be dreadful as I don't want to become reliant on morphine or a neck collar. I am somewhat confused and worried about things.

I have an appointment with a neuro-surgeon 14th February which is quick. The ball has started to roll and I hope they can help me as even typing this is painful and the morphine makes it hard to concentrate and think.

Tuesday, 17 January 2012

Pain, pain go away but don't come back another day.

In a lot of ways today has been one of the worst I have ever had. The herniated disc in my neck has been really bad which means I have pain from the top of my back right down my arm into my hand.

This means getting my husband to help me. He has been rushing around getting cold pads out of the freezer, putting a hot pad in the microwave and helping me get attached to my TENS maching. I explained where the sticky pads had to go and he was rooting around inside my nightie to stick the pads on the right places! Then it is finding the right connections, the white one on the bottom pad the red one on the top pad etc. So there he is almost strangling me while he tries to attach the snapper to the pad.

Then he says he will do the heat pad and bring some cold pads when the TENS has finished so we set the timer on the TENS and he goes to set the timer in the kitchen while the machine pulses away to, hopefully, get rid of the pain. No joy though. I have had hot pads, cold pads, TENS and painkillers but nothing has worked and I am still in pain and not able to get hold of the rheumotologist until tomorrow. I can't sleep because it so much if I lie down. It also hurts to sit down, stand up and and worst of all try to walk.

When he isn't getting pain relief he is rushing round like an idiot to pour me a drink, make tea, cook the dinner and cut mine up because even eating is difficult. As I need to test my glucose due to my diabetes he comes to help with that too. Then he sits down to watch his footie team to find the game has been postponed (no that isn't funny.)

Me I just lie here saying 'I can't ..............' I have to bang on the wall to get his attention which from my point of view isn't funny either just flaming painful.

He came in just now to ask if he could do anything. All I can say is I want to get rid of the pain and the only way that is going to happen is a doctor giving me a strong painkilling injection. When this happened last October I just got pain in my neck and a bit of shoulder pain but the numbness in my hand was the problem. Which got worse as the numbness spread up to my elbow. Now strangely the numbness I could cope with, it wasn't nice but this pain is unbelieveable.

I am wearing the neck collar that was given to me in October but it isn't doing anything to help.

A friend on facebook said perhaps I hade been typing too much, which is possible I suppose. But I cannot be sure. What I have wondered is perhaps a nerve is trapped, if so can it please extricate itself from where it has gotten itself trapped, thank you.

This is a whingeing blog today, I know and am sorry but sometimes it is essential to get these things off your chest.

Monday, 16 January 2012

Sitting comfortably?

I had to give in to using a wheelchair a long time ago and we found that the cobbled streets and pedestrian areas here were not very wheelchair friendly.

A lovely medieval town near us has many cobbled areas and my husband has no option but to push the chair over them. The wheels get stuck between the cobbles, I nearly end up falling out and I tell him often he chooses to push me over them on purpose! Of course he pleads that is not true, uuumm! It is very uncomfortable too as the constant jigging about causes pain in my back. It isn't any better with a walking cane either as the end can also end up between the cobbles causing one to trip.

We took a trip to Dijon, the capitol of Burgundy, to see how user friendly it was. The answer is not very.

The main problem is dropped kerbs. The distinct lack of them is evident to people with wheelchairs and pushchairs. We actually found a road with dropped kerbs one side and not the other; very strange and obviously not thought through. Some kerbs are incredibly high and then having to either get the chair up them or down them is hindered by the cobbles; again.

We arrived at a disabled parking space one day to see an ambulance at a doctor's surgery. In France the ambulance system is quite unlike that of the UK. You can book an ambulance or ambulance car to take you to appointments. We watched as two ambulance people lifted an elderly man from the ambulance in a wheelchair and then had to lift the chair with the man in it up a flight of steps to the doctor's office. I am sorry to say that this is not a rare occurance.

We were looking for a bank. It was frustrating to find that so many banks do not have disabled access. It is not restricted to banks. Post offices are also in many instances inaccessible, the one in our nearest town is a point in question and I have to send my husband with a detailed list if I need anything from there or sent. The most annoying and frustrating place was the Tax office. We submit our tax form every year and we would go to the office to make sure the form was correctly completed. But it was a nightmare to get into and because the building was leased they couldn't add a slope or any other entrance. The inside is beautiful as it is a very old house which has been converted. The stone stairs have carvings and ornate bannisters. I, however, have to wait until someone is free to come and see me downstairs in front of everyone else.

Difficulty in access isn't restricted to public buildings. Restaurants are notorious for having bad access. On holiday one year in the Alsace we stopped at a restaurant where I asked if I could get into the restaurant. I was assured that there was no problem; the restaurant was upstairs but no lift! I have had very helpful restauranteurs who have made space for me but I have found it very hard too which does spoil an evening out.

Concert halls are just as problematic. I saw that a favourite band of mine was coming to a big arena near us. I tried to book seats as soon as we knew but they were not going to make it easy for me. I couldn't have the wheelchair as there was no room and I would have to sit on a chair. This is extremely uncomfortable for me but also I actually had to get to the seats in the chair and what would happen to the chair after I had transferred? I couldn't get to the refreshments in the interval and then I had to get out at the end; not at all satisfactory.

Access to shops and shopping is a bone of contention for me. Some shops are so cluttered with stock that there is no room to manoeuvre the chair. Invariably I end uptaking half the stock with me on the chair. There is no room to wheel between aisles due to end stands which protrude into the aisle.

Supermarkets with trollies that fit the chair are very few and far between which means me having a basket on my knees causing a great deal of pain and discomfort. And the checkout! Unlike the UK where all checkouts are the same size here in France the checkouts are all too narrow for the manual chair let alone an electric one. There are one or two checkouts wide enough for my chair but often they are marked for disabled people, ten items or under and for expectant mothers. If you ask if the person if front of you needs a designated disabled checkout they will say that they didn't realise it was a disabled one even if there is a huge great sign there! The checkout cashiers don't help as they will not tell people they can't use them and you arrive with a basket of shopping and they serve someone with a trolley load and give you an appologetic smile. I said to one that it was her job to serve just those deserving of using a designated checkout but she just shrugged.

I have said before that the disabled people themselves don't see this as serious. They just accept that things are the way they are. L'Association des Paralysés de France is set up to support and assist disabled people and their families. However they don't fight for these basic rights that we can access places the same as anyone else, do more that buy a few basic items at one time in a supermarket, go and enjoy a concert, access a restaurant or even submit a tax form. Disabled people are as entitled everyone else to live a normal life. I don't want to change the quaint, medieval towns and resurface them but dropped kerbs is not a great ask. I would like shops to rethink their displays to allow people, like me and you, to shop normally without hinderance. I am not asking for much just understanding and respect. I give people respect if they earn it but I cannot give respect to those who treat me as though my money isn't as good as anyone elses.

I had an experience in hospital that in many ways was quite encouraging. I was admitted with a herniated cervical disc and at first I had to stay in bed because the armchair they supplied was quite unsuitable. It had a low seat and back and couldn't support me. I asked if my husband could bring in my electric wheelchair and they agreed. The difference was amazing, I could get out of bed and sit in the chair giving me a different perspective on the view outside and the room. I was then transferred to a hospital near home to have what was called rest and recuperation. Again I asked for my electric chair and again they said yes. My husband placed it by the bed and I could easily transfer from the bed to the chair, no problem.

One day I was in bed when a lady came in to clean and I was astounded as she tried to lift the chair to clean around it! It won't move she cried. No, it is very heavy because it is electric and has a motor on the back! So she put her hand on the control and pressed the button whereby the chair shot forward into her. Luckily she wasn't hurt but she left the chair alone after that. Sometimes you just wonder where they find people!

Sunday, 15 January 2012

Is your consultant sitting pretty on their pedestal?

I have found that extracting information from consultants is equivilent to having a tooth pulled; both painful and frustrating.

I have a fairly good relationship with my rheumotologist who, for a doctor in the area where I live, speaks excellent English. We talk in English with me translating into French things he is not sure about and the consultation ends up in a lesson. He will ask what things are in English and me asking what things are in French and we take notes!

However, this relationship is marred by the fact I have to ask him if a symptom is connected to rheumatoid or osteo arthritis (I have both and fibromyalgia too.) He often says 'Oh yes.' or annoyingly, 'most probably!'

I am a member of various groups or forums and it there that many of my questions are answered. It is quite upsetting to read the problems faced by so many sufferers of RA. It is a despicable disease that has so many side effects that are often unwisely ignored by sufferers.

I had great difficulty eating, talking and yawning. Eventually I googled the symptoms and of course it was the RA. I spoke to my rheumotologist and he agreed. The same with my neck. I had a very worrying time where I was dizzy even lying down. I went with my husband to the pharmacy to collect his prescription and I fell over. The pharmacist said immediately it was the RA. I had a dizzy spell at the rheumatologist's office when I accompanied my husband and I told him what the pharmacist had said but he wasn't convinced.

He was convinced when I was admitted to hospital with a herniated cervical disc and he treated me for it. That was last October. We had believed it was better but it has herniated again and I have two weeks of wearing the cervical collar, taking higher doses of steroids and painkillers and not moving my neck any more than is necessary. If he had acted a year ago perhaps I might not be in this painful position.

Do we see our consultants as infallible? Are they put on too high a pedestal? Should we ensure we are better informed?

We should see the consultants as fallible, they are after all only human and have choices to make as many of us do. The only difference is they are making choices connected to peoples' lives. The choice they make is the difference in pain or no pain. The difference in mobility or non mobility. The difference is earning a living or not.

They have set themselves up to be revered. As the experts. And people do believe the word of the consultant is final. In doing so they are setting themselves up for a fall; literally. They have to understand that having the title of Doctor doesn't mean mistakes can't be made. Unfortunately, many people who rely totally on the word and actions of the consultant are in the older catagory, those who perhaps don't have access to the internet, or access to the experiences of others who are experiencing similar symptoms or problems. This, when they could be pro active and asking for better treatment.

Becoming better informed means accessing as much material as possible. The internet holds a wealth of information but must be viewed with scepticism. There are many sites that give advice and information with varying degrees of acuracy. There are some advocating treatments that can cure rheumatoid arthritis. As anyone who has RA will tell you, it is possible to go into remission but there is no cure. I, for one, was told that I would have RA for life. Groups or forums give sufferers the opportunity to discuss treatments and symptoms, it also allows sufferers to give support and advice.

Books are also a good source of information. There are books that explain rheumatoid arthritis as to what it is and the medication that is used to treat it. Others are self help books and these I think are much like the websites available. They advocate treatments, diets, supplements and exercises. There are foods that can help as does exercise. Supplements are useful if prescribed by a doctor, I take a calcium supplement as I have a lactose intolerance, my rheumotologist insists I take this supplement daily. There are other supplements a consultant will prescribe such as glucosamine for osteo arthritis, but other supplements can be dubious and it is always advisable to discuss a supplement with your consultant or doctor be taking it in case there is a reaction with any prescsribed medication.

Self help groups bring together people who are affected by the same illness or disease. It is helpful to be able to discuss symptoms and discuss treatment. Knowing that you are not alone is reassuring. A disease like rheumatoid arthritis is disabling and many sufferers feel cut off from society through that disability. Even leaving the house can be difficult and it is a comfort if there is someone to take you to a group once a week or once a month. Some groups supply councelling services, hairdressers, lunches and offer outings.

However you access it make sure you are pro active and find out as much as possible about your disease. In some way it may save you some level of pain and stress.

Saturday, 14 January 2012

You learn something new everyday!

Now being that I am a 60+ something lady I feel I am quite with it. I blog, as you see, I have a website, I use facebook and I twitter. I use the web a lot to look up things of interest and I e-mail and text my friends. I do use a telephone too but if I need to take my time the other ways of contact are better for me.

I was on facebook looking at a forum that Fred and I belong to and a lady asked a question about problems with her throat. Did other people have similar problems? She asked. She was told this was Cricoarytenoid Joint.

This joint is situated in the back wall of the larynx, it helps open, close and tighten the vocal chords during speech and breathing.

According to what I read on the internet about one in three people with Rheumatoid arthritis suffers from Criocarytenoid arthritis. But I had never heard of it.

The symptoms include:
: Hoarseness
:Pain when swallowing
:Sensation of having something stuck in your throat
:Pain when talking or coughing
:Shortness of breath

Many people, like me, have passed the problem off, or have mentioned it to a consultant but have not been told what it could be. I have seen an ENT consultant but all that came of that was to find I had a huge infection in my sinuses that had progressed to my lungs giving me pneumonia.

At present I have another problem with a herniated cervical disc and have increased my steroids dose. If along with the disc problem the problem with my throat persists I will telephone the Rheumotologist in two weeks, as arranged, and ask him what we can do.

I cough a lot, have sleep apnea (caused he says by the RA), have difficulty in swallowing (which I have told him, especially large tablets), a constant feeling of having a blocked throat and my voice has changed.

I am not sure if this is just me, but I have to say to my consultant 'do you think it could be....?' and invariably he says, 'Yes!'

My husband says he thinks that consultants don't want to be negative all the time and say this or that can happen. I agree but, when presented with a symptom they should be honest. I am a big girl I can take it so, why do I have to surf the internet to find things out and then present them to him?

Horray for the forums and groups I belong to. We support one another, reassure one another but we also help to educate each other too. That is the joy of being able to use the modern day technology.

Friday, 13 January 2012

Crying isn't a sign of weakness.

I cry sometimes out of anger, frustration, guilt and sometimes just feeling sorry for myself.

Tears are healing at times and I feel people should cry to vent the feelings inside. If we let feelings build up they have to be released in someway or another. If it is not through tears then it could appear through physical activity such as smashing things, hitting, throwing.

I often feel upset when I am unable to do things I feel I should be able to do. Pain is the major factor in stopping activity. My husband has to do such a lot for me and much of that is quite intimate. He washes me, dresses me and takes me to the toilet. Toileting is the worst part for me as it is very much a personal action and having someone take you, prepare you for the toilet and then having to help you afterward is enough to reduce someone to tears. He does the shopping, cooking and also cuts up my food, sometimes he has to feed me as well.

For many years I felt in control. Working, shopping, cooking, looking after the family, swimming, aqua aerobics, running a Girl Guide unit, adult education classes. All requiring some level of activity both mental and physical. I was able to drive, in fact I needed to drive for my job. Over night it all stopped and my husband became my carer. People with think that after 10 years I would have become used to accepting the help but no. I find it difficult to accept the help and impossible to ask for help. If I need something I want to get it, go and buy it, be independent. Sometimes I think I have accepted the situation then something happens to change everything.

I burst into tears so often that upsets me! But, I have thought long and hard about crying and am of the opinion that crying isn't a sign of weakness but instead a sign that you are strong enough to allow people to see your emotions.

Allowing emotions to show allows people to see that you have feelings and that you can be affected by what you have to cope with.

Being vulnerable is difficult and people don't understand how living day to day with pain affects your life unless they are in the same position. I need to vent my feelings because if I try to keep a stiff upper lip I can feel the stress building up.

I don't think it is a matter of crying all the time but if you are able to cry now and again it helps to ease the pain inside as well as the pain in your joints. I say this because if I let it build up inside me my joints start to hurt, crying seems to ease all pain.

So if you hurt inside or out shed a tear or two and show you are human, you can be hurt and you are above all strong enough to show the world.

Thursday, 12 January 2012

Staying positive.

We woke this morning to a very grey, foggy, damp, cold day.

The nurse came to do my blood test and give me my methotrexate injection. She was very cold and said the fog was quite dense. We had to go shopping and visit the pharmacy so we wrapped warmly and set off. The thermometer in the car was registering minus 1 as soon as we left home.

The local market town was freezing. I had a thick jacket, hat, boots and gloves but still felt cold. We went to get my medication and then did the shopping as quickly as possible to get home. Luckily we didn't have to wait around too long and we were on our way home. By this time my hips, back, and neck were agony.

The wood burner in the kitchen was warmly welcoming. A hot cup of coffee went a long way to warm us up on the inside. I was insistent that I help prepare lunch and dinner but the pain in my hands made things very difficult but being so stubborn I ploughed on.

After lunch we sat by a huge log fire in our lounge with a cup of tea and a good book. Where better on a horrid day? Curled up in my big armchair is was fantastic, watching the flames and feeling the warmth made me appreciate what I have.

Unfortunately the methotrexate always make me feel quite unwell but I am so stubborn I don't want to give in unless there is nothing else for it.

Methotrexate has not done me any favours. Dizziness, sore throat, itching, hair loss and problems with my lungs. I had pneumonia twice in four months. One of the side effects noted about methotrexate is that it causes mild hair loss but for me I lost all the hair on my legs, bikini line and under arms.

I also take prednisone daily. The side effects of that are also very distressing. The weight gain around the abdoment, the dowger hump, the round 'moon' face, acne (for me this has been mainly on the chest, arms, buttocks and occasionally on my face. I have developed diabetes, I have osteopenia in my left hip, high blood pressure and where I have lost hair in certain places I have an inordinate amount of hair on my face. I am lucky that I am very fair so the hair is not as noticeable as it could be but it is there.

In October I was hospitalized with a herniated cervical disc. On admission I was also found to be diabetic. After initially increasing the dose of prednisone over a month while the disc healed, my rheumotologist decided it might be prudent to lower the dose slowly over the next few months to get me off the steroid. I was happy with this arrangement but I am amazed to find that since lowering the dose I now have hairy legs! I was shaving my legs lightly every three months now if I leave it I shall be plaiting the hairs! Still no hair under the arms though, but I do believe that I am seeing less hair on my face. The dowger hump has gone and I have noticed a great change in my face which looks less moon faced. As I was put on a diabetic diet I am losing weight which is good news for the arthritis, the diabetes and the high blood pressure.

I still get pain though which perhaps is due to the lower dosage of steroid but until the blood test results come back I really don't know. My neck has been in so much pain that I have temporarily increased the steroid after talking to my rheumotologist, he has that this is for two weeks but if the pain and the side effects of the disc continue then we will have to discuss the matter.

I have enough problems with the pain Fred gives me without the cold and damp weather we are stuck with at present. Managing Fred, coping with the pain, trying to get off of medication is very stressful which plays right into the hands of the auto immune system and throws that right off kilter.

But stay positive. I am positive it hurts, I am positive I am fed up with Fred, I am positive I hate my medication, I am positive I loathe the side effects.