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

The days that shaped me...

In my Head Girl speech at Coll on Speech Day, I addressed the school, parents, teachers, friends, Huw Edwards and the Trustees with the following quotation:

"Do not go where the path may lead, go instead where there is no path and leave a trail" (Ralph Waldo Emerson". Co-incidentally, written on the prizes that I was awarded there is a message from each one of my teachers. 

One such example is as follows: "leadership is the art of getting someone else to do something you want done because he wants to do it (Eisenhower). You have an extraordinary talent to make people willingly follow your lead. Continue to learn and lead by example".  

2012 has thus far been a year of learning. It also looks to be full of opportunities to shape young minds. I am not where I thought I would be when I was standing at the lectern looking out at all of the anticipated faces, young and old. So much has changed for me since my school days. I am no more a cynic than the next person but I can now see how difficult life can be for some. Up until now I have had a very privileged life. My parents have worked tirelessly to give me the education I received. St Davids Girls School, Lady Eleanor Holles and Llandovery College, finally ending up at Warwick - not a bad run, though I must admit to putting 100% into every sport and activity.

Last night I met one of my oldest friends,  Morgan (Seb). We were reminiscing about being tired and cold in the middle of a field in Pembrokeshire, covered in mud and camo on stag at 4am and attempting to ambush the rebel PANTS army the next morning (the People's Army of North Templeton Soldiers), being taken as prisoners of war and still having beaming smiles despite not having eaten anything other than biscuit browns and boiled sweets for two days. There were the endless days in tents trying to bribe my friends along the coastal path with Haribo, chilling with the Duke of Edinburgh with a cup of tea, the day Morgan saved my life on Pen y Fan, days of swatting on Economic policies to present to the Bank of England when none of us actually studied Economics, racing a tall ship to Antwerp and getting caught in an horrific storm, getting lost in Cologne on Choir Tour and eating bratwurst with some travelling monks, attacking the younger girls with silly string and taping them into their beds in Ty Llanofer (boarding house) with gaffa tape when they set the fire alarms off in the middle of the night or throwing icy cold water over them when they turned the shower off. 

Performing a Royal Salute on horseback for HM The Queen at Royal Windsor...getting rather 'squiffy' and persuading a whole camp full of officers and CTT to jump into the back of one single van and go to some shady club in Weymouth only having to call the Security guards to come and drive us back to base at 7am...jumping out of Chinooks at Nesscliffe on UKLF with all guns blazing having gone to war because the Middle East were controlling the world price of milk chocolate...7 D of E Gold expeditions in Canada and standing on the top of Bow Glacier. I dearly miss the enthusiasm that we all shared when we were cold and wet, didn't know what we were doing next or what we would be asked to turn our hands to and were always bright and bushy tailed at 6 am. I can honestly say that I never learnt more about myself or the human race than when we were faced with what we thought was adversity. 

However, I now face a new challenge and am trying to stare adversity in the face as after all, 'these things are sent to try us' (thanks Mr Rees). All of the worldy knowledge that I have accumulated outside the classroom is coming to fruition. Books and science can only help so much, for once you know the theory you must have the gumption to put it into practice. 

I can honestly say that I have now chosen a new path...well I am exploring a new one at least and I do not intend to tread lightly. I have never been one to follow without due reason or unless I didn't think I was equipped to lead myself. I have always preferred to go my own way with the knowledge that I have gained, my mind which I trust implicitly and a little (or a lot) of help from my friends. 

The last inscription in my Warden's (Headmaster's) prize: "What lies behind us and what lies ahead of us are tiny matters compared to what lives within us" (Henry Thoreau). Watch out because I'm well and truly back. A new perspective on life, perhaps, but my trail is blazing ahead. I will continue to learn.