I have very recently been called into my benefits office due to someone making allegations that I shouldn't be in receipt of the benefit that I am and that I am exaggerating my illness. I currently suffer from stress related illness as well as PSA. Over the summer here in the UK we had a few weeks of glorious weather, I was able to go for long walks and on days my ankles couldn't take walking I was at least able to ride my bike. Getting outside and being, for the first time in a long time, practically pain free with pain meds really helped my stress. I was able to drop a stone in weight (accumulated by being very physically limited in the months prior). I was over the moon.
I know I'm not doing anything wrong with regard to my benefit, we all have good days and bad days and since the colder/damper weather has returned I'm back to being stiff and achy constantly whilst I await my next flair up. Obviously these allegations that have been made have really upset me. I was so proud of myself for being able to get up and out and finding a positive way of improving my mood etc. Now I cant walk out of my front door without thinking someone is watching me.. Its horrible!
Anyway, the purpose of this post... I guess I just want to double check that my being able to do stuff when it was warm is normal for our condition or is it just me? I actually feel guilty now for having felt better for a while...
We have good days and bad days, and we have to take full advantage of the good days to keep up on our health. Warmer weather always feel better on the joints so don’t feel guilty, enjoy the sunshine and do want you love if someone has a problem get a note from the doctor explaining that some days are just better. Those days are a very limited source for us.
Thanks Shutterbug. Trying to explain PSA to anyone who either isnt a doctor or a fellow patient is like banging your head on a brick wall. Yes it is possible to look perfectly normal yet be in constant pain and feeling awful... I'm just getting so tired of feeling like I have to justify myself. Thanks again x
Thanks hun :-) I got my wrists slapped by my Specialist a few weeks ago, apparently forcing myself to walk through the pain was the wrong thing to do. Stay mobile - yes. Over do it - No... Cant win can we! Sit still - seize up, Move around - Aggravate inflammation and risk further damage to joints.
Sorry! I'm clearly feeling a little sorry for myself today! :-(
As for enlightening others I've just been posting articles on facebook in a subtle attempt to remind people that just because I wear a smile most of the time and maintain a sense of humour it doesnt mean everything is ok!
Oh bless you, that’s a really horrible thing to have happened to you…the trouble is some people are very ignorant.
Our condition is unpredictable, I started the week ok but am having a sick day today because I now have trouble standing and that’s one of the main things I have to do at work.
There often seems no reason why you are good one day but not the next, its very frustrating.
Definitely get the backing of your specialist, and hang in there you’ve done nothing wrong!
It is our responsibility to help ourselves be as healthy as we can with PsA. This means getting out and moving when our bodies will allow it, doing things to boost our mood, etc. A few good days, or weeks, or even months, doesn't mean that you don't have substantial medical issues that need constant treatment and constant attention. On good days, we need to make sure we balance doing with resting so we don't overdo it. On bad days, we need to try to accomplish things without pushing our bodies too hard. Just the managing of PsA is stressful. Add the pain, the uncertainty, etc. and it's a lot of work and a lot of stress.