Daily symptom coping mechanisms

[dp]

]Well, thank you for welcoming me to this pin board! For the last five years I have been determind cvid is curable and I have refused to acknowledge the reality of its long term prognosis. I have investedit in the hope that pma and stiff upper lip will shove it out of my body into the atmosphere and normal life will resume..... It hasn't, yet, although I am better than any forecasts and continue to defy what were the perceived odds, daily life As I once knew is yet to return and my attention is suddenly abruptly drawn to a realisation that I may have peaked - for now at least, and what I used to do may not be possible. I am angry, upset and frustrated yet determined to turn this round but in the meantime struggle with the daily symptoms effects on life - from relationships, emotions, expectations relating to both those and my aspirations for a life I had once thought possible.  Coming to terms with the reality whilst dealing with the daily and weekly routine of symptoms and treatment is a tough reflection to bare. A shadow that cannot be left regardless of the light.  Although with all the endless juicing and healthy regimes and positive thinking sometimes in the dead of night when the aches are biting and knarling their perilous presence in my body I am reminded that although so much better - And please do not underestimate my thanks and gratitude that this is so. The reality is this awful illness will not go. There must be a cure. Eat yourself well, exercise, breath do everything to cure the body I inhabit of this syndrome that it harbours within its core. Please share here all your have experienced and endured and found to cope whilst we find the true cure!

[supersub70]

Hi sorry you are feeling down. I'm sure we all have very different and very personal stories to tell so a one size fit all solution will probably not fit everyone's story. For me being diagnosed with CVID was a largely positive experience. In the space of one consultancy it made sense of almost all of my childhood - reoccurring ear infections, more days off school than anyone else in my class, no swimming lessons, poor lung capacity etc etc. In some ways the diagnosis helped me to re-discover myself, I now had an illness to blame, I was no longer the weakling, school dodger who couldn't swim. This was not my fault anymore, I was effectively born with this. Now I had a treatment, the effects were, and still are, amazing. Virtually no ear infections, a virtual stranger to the GP surgery, better outlook on life. I've never thought too much about it being incurable, that's just something I cannot change. I tried to be a bit humble and thought 'well, if this is my penance, my cross to bear in life then so be it. It could have been a lot worse'...

On a positive note. It was over 10 years ago now but I do seem to recall an early conversation with my Immunologist in which he mentioned a very small chance that the treatment has been known to kick start the body's immune system back into life. I have only purely anecdotal evidence for this by the way.