Living with

@Courtney_J 

Hi

Well where do I start!

I get frustrated by the constant exhaustion in my muscles. The slightest action feels like I have just done a work out to that part of my body whether it be an arm or a my legs for example.

I am aware that my disease isn't managed at all yet even though I have been diagnosed 18 months or so. It just feels like Russian Roulette with my medication as to whether I will be allowed to continue it from one blood test to the next  as my liver rebells.

Everyday a new part of my body starts to creak and feel stiff and painful. To be honest it's scaring me just how quickly things are progressing. It is really getting me down. I can't walk far, self care is difficult . I'm determined to be independent so I'll struggle to succeed in the task.

I want to have the energy to get through my day as I work full time running a women's refuge which is mentally very demanding but fortunately not too physically. I'm so tired at the end of each day. It's an uncomfortable exhaustion. I also suffer from Narcolepsy diagnosed at a similar time to the arthritis, and this also gives me fatigue- I have a double whammy of fatigue.!

I am shielding at the moment so I have had a chance to rest. The first week off work I slept solidly and now I feel more rested. I confess I am anxious about becoming so  exhausted again but I am determined this illness won't stop me from doing what I love.

Overall I feel distressed with it all and just want it to go away, My healing has gone to pot. I have put weight on as I can't exercise, I dread going upstairs and at times I just don't know how to deal with it.

Sorry to sound so down hearted, I just don't feel I can bring any positivity to this discussion.

x..