A bit delayed posting but I have been buried in the depths of journal articles and textbooks this week for my dissertation and emerged today to discover somehow it is Friday already!
My dissertation is due in September and I keep swinging between thinking that means I have plenty of time to then having a panic over how much I've got to do and being convinced I will never finish it! Luckily a week off of studying in London gave me a break from it and I've returned with renewed enthusiasm for studying again, hence my unintentional hibernation.
Last week was my much anticipated week of hospital appointments with specialists in London. I was very anxious before hand as a lot of pressure had been placed on this week for answers. I was mostly terrified I would get there and they would say, once again, that I was in the wrong departments and there was nothing they could do. I think there is also a fear of the unknown as when you don't fully know what is going on or is wrong you know that getting an answer could prove devastating, give you hope or just keep you confused depending on what it is.
My week in London did give me answers, however it has now also posed a lot more questions too. What it has confirmed though is that something is very wrong and it's not straightforward. But then where would the fun be in getting ill unless you do it in style!
After what was definitely the most horrible train journey of my life (having to sit up for ten hours when I can't normally manage more than two did feel like a form of torture).
My first appointment was with tropical diseases. As my symptoms first emerged after living in Uganda and then got significantly worse post Tanzania this was one of the first departments I was signposted to, where people took me very seriously. I've now seen my consultant here several times and I am sure he has taken years off what could have been my potential diagnosis journey through his interest and speaking to different consultants across departments. It was him who first mentioned POTS and he managed to get a Harley Street dermatologist to look at some unidentified hand rashes I keep getting who said- that looks very abnormal, your reacting to the sun and you probably have something autoimmune also going on too. The Tropical Diseases department have now taken 39 bottles of blood from me so I have been checked for all sorts of diseases, illnesses and parasites here. Only there are still no answers.
Unfortunately with the way funding in the NHS works, I was told they couldn't give me anymore appointments as I now count as a Scottish patient and so can't be seen. This is very frustrating as there is no equivalent within Scotland and tropical comes under infectious diseases. Fortunately my consultant had undergone a lot of paperwork and speaking to people and they agreed I could have a final appointment.
While everything has come back clear or only slightly abnormal they are more convinced that something is wrong and it's probably something very rare and obscure. I was very hypovolemic (low blood volume) on the day and with my deterioration over the past few months they were not surprised I was in a wheelchair or had had more hospital admissions. While there was nothing they could do on the day and no answers they could give me they did take a final set of bloods and have put in for referrals with specialists in Glasgow in rheumatology. I also had the experience of being interviewed by medical students who had been brought along to hear of an unusual and interesting case who asked me all sorts of questions from 'what does it feel like when your pulse is very high' (strange and like I'm not very real) to 'have I been bitten by a bat' (no).
My other main appointment of the week was with the autonomic unit. The GP who referred me wasn't sure if they would see me originally as it's hard to be taken on as a new patient however not only did they agree but I've managed to overcome the funding problems too by being once again an unusual case. My appointment here lasted an hour and 45 minutes and consisted of a lot of questions and also some practical tests to look at my joints, pulse, reflexes and nerves. This was interesting as I learnt from this that there is more wrong than I had realised. For example I have extremely altered senses in my hands and feet and can't feel properly. I had no idea this was the case until I started having pins stuck in me! My heart is also not only fast but skipping beats and I have significantly different blood pressure readings in each arm when my heart is struggling. The consultant was very helpful, however, like everyone else said 'we don't know what is going on and that I possibly have something extremely rare'. However he was able to answer a lot of questions I had. It turns out I'm not allowed to fly anymore, that lots of people with things like this will everything stop deteriorating and plateau and that when they say I need to keep exercising this does not mean go for a hike or go to the gym but rather carry out muscle strengthening exercises while sitting down on a couch at home!
The big news though from this appointment is I'm being admitted as a patient for a week of tests at some point later this year. I've been warned the week will probably be horrible as they deliberately try to make you feel ill to see what happens and why your body isn't responding correctly, however I'm very keen to get answers and so I'm sure it will be worth it in the long run!
Since coming home I've been contacted again by tropical diseases and even though they can't keep me on as a patient there they have found a way to give me phone consultations. My consultant has also been speaking to people around the world about my case and some other people have taken an interest. My blood work is being sent off to an even more specialist lab then theirs and he is working with some other tropical medicine, microbiologists and neurologists to try and find answers. I feel very lucky right now that I'm being taken so seriously and have people trying to get to the bottom of it all.
While the week was extremely medical and all I pretty much did was attend appointments and sleep, I did get to meet up with some people, which was really lovely and stopped me feeling quite so isolated. It has really helped my mental health too and I'm feeling a lot more positive about life and everything else again- thank you to everyone I met up with and spoke to during the week!
I also embarked on a mission with Rollo (the wheelchair) however that I think requires a blog post to itself…