So what is it really like..... Part 1

According to Wikkipedia, the prelevance of CVID worldwide is 1 in 50,000. Well I guess that I have always wanted to feel unique!!

As such people around do often want to know what its like to have something like CVID and what effects it has. I guess the best way to look at it is before treatment and how I am finding this now that I am being treated.

Potentially I could have had my CVID since birth. Although I dont remember being particularly sickly as a child, I do remember having regular migraines and some regular throat and tonsil issues. Many times my tonsils were threatened with removal, only for the infection to go and my tonsils are still with me. Fast forward to the age of 14, and I was diagnosed with Glandular Fever, which I apparently managed to catch again two years later.

I dont remember being particularly ill while I was at sixth form or uni, however from the age of 23 onwards, I remember a number of different illnesses. It started with a nasty chest infection in December 2003. I was coughing horrendously, and burning up. From then on I remember being ill probably more times than I remember being well.

When I was first told that I may have CVID due to my low immunoglobulin counts, I didnt think that was the case, as although I had felt unwell often, I didnt feel as though I'd had many infections (one of the symptoms of CVID is repetitive and chronic infection.). The main sysmptom I remember is a massive level of tiredness. No matter how much sleep I had it would never go and worsen through the week. Coupled with the poor sleep pattern I had that time, I would end up spending most of my weekends sleeping purely as I was drained, it all started to run me down. I was later told by my infusion nurse that the tiredness was actually being caused by my body continually fighting infection. The infections would never really go and would simply come back again.

Many times I had to miss out on social events, as I just didnt feel that I could go. I sure that I lost so many friends purely as I felt unable to socialise due to the level of drainedness that I had. It was a vicious circle, as the more drianed I felt, the more it seemed to get to me.

For me though, the single worst symptom are the completely random aches and pains that seem to accompany CVID. There is nothing weirder than randomly developing an ache in the middle of my bicep. Any one who knows me well enough, knows I love my even football, but even that became a chore at times. My legs and feet would ache so much and, I would be so drained that by the end of the game I felt I could hardly walk. I felt so much older then my 29 years.

I was told that the treatment would ease those sysmptoms over time. I guess we will just have to see...........