Hi fellow CIDP's and supporters. Well it has taken over 14+ months for me to begin to accept that I have CIDP and Sarcoidisis (Both immune disorders). After many IVIG, drugs and MORE drugs, the fatigue, feeling so sick, my doctors have told me it is progressing (though slowly :-) up my legs and now pins and needles in my hands and at this stage cannot controll the progression. The reason for saying all this is simply to 'Vent' my anger, fustrustration and saddness that I am putting my family under. This disease is invisable, only the person with CIDP can feel the PAIN all day, every day. For other people to understand.....well it's hard, though they also feel our pain.
BUT I am slowly coming to terms with this. Being positive is hard, I know (I TRULLY KNOW), but as with many of you I have changed my diet, trying to excersize and remain happy for my wife and childern.
I am not sure what the years ahead will bring me....will they find a cure???....will they have a drug to stop the pain, but not change your mood??? no-one knows. Will I be able play with my grand childern??
What I do know is if we (ALL OF US) can stick together and sometimes just 'speak out' on how we are feeling....well no harm in that.
As one of my many doctors told me last week "I am so sorry Michael, but it is a disgusting disease". This was a 'bad day' for me!
I am asked and I also ask "WHY?", don't smoke, don't drink, no drugs, so what did I or you / we deserve to get this. Again I do not have the answer, but I leave you with this message.
Sufferers, Survivors and Supporters of CIDP are in this together and need to understand each other, support and make each other smile once in a while.
Feel free to contact me at anytime as I like you need as much support and to try to undersatnd this disease a little more.