Zebras

On Saturday (yesterday) I attended the World Immunology Day symposium at the Russell Hotel. I learnt a lot about PAD (Primary Antibody Disorder) and also met a lot of people suffering from various other immune deficiencies. It made me feel part of something, that there are other people out there who understand. 

It is so frustrating to make plans only to have to cancel them or change them at the last minute. I am learning now to warn friends and family that my plans have to be flexible and that if I can make it, I may not be 100%. One of the most frustrating things about it all is wanting so desperately to be well. I put some make up on and a smile and everyone thinks that I look healthy but so often this is not the case. Even if I am well on one day, I may be laid out the next and incapable of doing very much. 

Today I found out that as primary immunodeficiency patients we are known as zebras. At medical school, doctors are taught "when you hear hoof beats, think horses, not zebras", focusing on the likeliest possibilities when making a diagnosis. As PAD patients, we do not represent the norm, we are "the zebras of the medical world". 

Last summer, I woke up every day that I was in Spain feeling extremely ill, shivery, tired and fed up. I lay by the pool and looked for the zebra whose home was the private nature reserve that the villa overlooked. I can't help but think that it was a sign in some small way. To me it seems significant anyhow. 

I've also been diagnosed with Post Traumatic Growth (Tedeschi and Calhoun, 1996). It is a reaction that occurs in some people after a period of extreme suffering. Supposedly it is a positive response to the way that I view my life and has been described as a profound change in my understanding of the world and the people in it. It also results in a dramatic change in my priorities. Things that used to matter to me seem redundant but I have new priorities and as I mentioned before, a new path to follow. Despite feeling weak and poorly a lot of the time, I feel much stronger in myself. I feel a deep sense of personal worth and am much more understanding. I accept that this is the way I am and how my life is going to be - I just need to do everything that I can to make my life as 'normal' as possible. 

At the symposium I learnt a lot about the IVIG/subcut immunoglobulin. It may be possible for me to do this at home rather than having to go to hospital. Depending on the dose that I can tolerate in one go, the number of days every month may also be reduced from 5 to more like 2 or 3.

Regardless of what happens, I have hope and I am learning to be proud of my stripes.

For more info about PAD and other immune deficiency disorders please visit the UKPIPS website - they are doing a fantastic job and provide support to patients and families. To me, the pictures on the homepage signify a sense adventure, exactly what I need to be looking forward to: http://www.ukpips.org.uk