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?
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