It is a subject we have discussed often on the AS sites on FB, friends and family and their understanding of AS (Ankylosing Spondylitis), but one that just goes on and on.
I have mentioned in FB and Twitter that I have been having a difficult week, healthwise, difficulty in walking due to pain and stiffness in hips in particular, and I have mentioned this to mum, downplayed quite a lot, and of course OH sees it.
This morning mum asks how my aches and pains are, I say much the same, she then says even though she has a heavy cold and currently bedridden, we could maybe manage out tomorrow!!! I try to explain that I am having difficulty walking round the flat, and while walking more might well be good for me, I am not happy with the thought of going out and feeling like this outside. Oh she says, what have you been up to be this sore?????
My mother has never ever been able to understand that AS strikes when it strikes, I don’t so anything to cause it to, it isn’t ‘my fault’ it isn’t reacting to anything I have any control over. I can be sore through doing too much, in the same way as we all can, but AS pain is different. It is so difficult trying to explain this yet again without sounding irritated, because then she will be offended. Just like she will tell me to go to my bed and rest and then give me a row when I am up and about, and I have to remind her that too much time in bed is not good as I will stiffen up. Then the next time I haven’t slept well and am tired, she will tell me to get up in case I stiffen up…………
Then, yesterday, OH watching me shuffling around holding onto the wall, does little to help, except carry the cup of coffee, and pop though every half hour to see if I wanted a cuppa. Asks ‘when are you back to the doctor?’ in and exasperated tone. I feel it offends him in some way to see me like that and again feel why do you not understand, you have known me for long enough (20+years). I ask him what he thinks the doc is going to do? He has no idea but thinks I should see him. Again I have to explain, I know what is wrong, I have the painkillers as I have arranged with rheumatologist to get the stronger painkillers to take along with usual ones on occasions like this!
I know I should have more patience, especially as I am aware that so many others have exactly the same issues, but it is so frustrating that no matter what happens with my AS it is initially assumed, a) I have done too much, so my own fault, or b) I am somehow negligent by not rushing off to the doc.
So I shall say, yet again, my favourite word of the moment – BUGGER!!!!!
Oh Jackie how well we understand each other and the frustration eh? They will never fully understand because they can't! It's no ones fault, if you haven't endured the pain, the depression, the hopelessness you sometimes feel how can you know what it feels like? All you can do at these times is what is best for you, the pain will make you feel like saying BUGGER frequently.....so bloody say it mate! Xxx
ReplyDeleteSounds all too familiar to me. And thats exactly the right word as it is "family" that are the worst at this! My mum cannot understand either how I am not capable of lengthy shopping excursions. sigh
ReplyDeleteI have often experienced the same situation here. I only have arthritis and angina and nothing as terrible as your dreadful illness but nevertheless it is also always My fault if I have a bad day. Perhaps our nearest and dearest don't like to think that 'nothing' can be done to cure us ?
ReplyDeleteTake care sweetie x x x