One womens story against an a invisable illness
Monday, 4 July 2011
A new chapter
Hey everyone,
First I want to apologise for being away so long but the last couple of months have been a mixture of being ill and being busy. After my last LP back in May I found that it only gave me a little amount of relief of my symptoms and not for very long as they came back with a vengeance. I found that although the pressure had released a little I was still having really bad headaches and eye pain as well as my neck and shoulders been really painful. I also had my joints progressively getting worse to the point I was just laying in my bed crying.
With pain comes depression. I found that I sank into a self pity hole and found days turned into weeks of me just not being able to be compassionate to others. I tried my best but I felt really selfish and full of self pity that I couldn't bring myself to give other sufferers words of support and comfort or to even search for that for myself. I spent days just laying in bed in pain or sleeping still trying to pretend I was still my positive self but the only one I was really honest with was my husband.
I guess my mood toke a turn when I decided to watch Terry Pratchett "choosing to die" (I haven't finished watching the programme or if I ever will because of the thoughts I had) and I actually fully understood why they chose this path and was at a point where I wanted to give up the fight myself, I even went to the point of going onto the Switzerland's centre's website to enquire. I was devastated when my husband spent Father's day nursing me rather then us showing him we appreciate him then days later ending up in A&E where they dismissed me entirely not even looking into my eyes to see if their was high pressure there, I was at a low.
So at that point I decided I needed some time out. I needed to get my head straight and back in the game. I needed to realise what's inportant and what I'm fighting for. I'm 24 I still have most of my life to live, I have to watch my kids grow up, get married and have kids of their own. I needed to know what I would be missing. I spent more time with my family and eventually pulled myself out of this dark time.
I also found another reason for fighting, I had something I could give. Though speaking to the wonderful Heidi on Twitter (I have IH) and asking if there was anything I could help her with as she was stressed I became admin of the I Have IH website and began supporting other people with IH either newly diagnosed or just looking for support and a place to vent.
In talking to Heidi she shared her vision of I Have IH becoming a charity set up to help people with IH. Through sharing her vision she asked me to join in to help her active her dream. I said yes and have spent time talking to her and finding ways to active her goal's as well as help her run the website and I must admit its giving me strength by helping people.
From being quite positive most of the time I've found by being supportive to others they in turn lift me up because at the very least what I'm going through I have more understanding and compassion to help someone else so it doesn't seem useless to me, it doesn't feel like I'm suffering for no reason.
So that's what I'm up to at the moment! xxx
www.ihaveih.com
Labels:
Intracranial Hypertension
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