About My Health
Whenever I go on a website or blog, I want to know about the person who has set it up, and why they have chosen to do what they're doing. Not all of you will be interested, some will already know, but I hope this information about my own health will tell you more about how I have got to this point and why it was important for me to start Rheum For Improvement.
It all started in 1994 (*Dramatic music*). before I even started primary school. My parents noticed that my wrist and knee joints were becoming very swollen and I was having difficulty moving them. I had always been a baby that cried a lot, particularly when I was put down or told to walk, but it wasn't until this time when there was a physical sign, that my parents were able to help me. Thankfully because of my young age and the progression of severity of my symptoms in such short time, I was referred to a paediatric rheumatologist and rapidly diagnosed with Juvenile Idiopathic Arthritis.
Initially, I required a large pushchair to get me around (this is my first memory of being embarrassed), had inserts for my shoes and wrist splints made, was having hydrotherapy three times a week, all through the faultless organisation of the teams at Hull Royal Infirmary.
I don't remember a huge amount about the years after that, being at school or how my arthritis affected me day to day. My parents have told me that they wanted to normalise things as much as possible, so never stopped me doing any activity I wanted to, as long as I felt well enough. In my mind, my memories of being 9 and 10 are of playing in the garden, with my next door neighbour, and buying pick and mix from Woolworths, so my mum and dad clearly did an excellent job!
At the age of around 10 I was started on disease modifying drugs. The first that was tried did not agree with me, so I was put on Methotrexate, which I am still prescribed today. It is not a pleasant drug, can give many side effects and has long term health consequences, but with occasional short courses of steroids, it allowed me to become more active, participate in school sports and be a 'normal' teenager. I think I can honestly say that I didn't think about Arthritis at all (probably helped by the fact that I was too worried about boys and clothes!).
Biologic therapies began to be licensed in the UK when I was a teenager and when I was 15 I started my first one, Enbrel. It was an injection that I was taught to do myself twice a week and as I had had some worsening of my pain and swelling (mainly in my knees), I could go back to playing hockey, which I loved.
Unfortunately when I moved away from home to university in 2008, things regressed slightly. I am sure that the environmental change, alcohol, poor structure of my time, and general upheaval that university causes, had a detrimental affect. I was seen at Guy's Hospital and the most wonderful man, Professor Cope, kindly took over my care and looked after me for the next 7 years. In this time I tried a further 8 different biologic therapies, but they either didn't work or I had bad reactions. Throughout this time I had continued my methotrexate and been on long-term steroids, first started at the end of 2003. My body was now reliant on the tablets and I stopped producing my own steroids, meaning that if I am ever able to reduce the dose, my body will have to try and relearn to produce it.
I always overlook the fact that over 5 years I was studying to become a doctor, and although I feel I under-achieved compared to my friends, I got through it and graduated in 2013. It was the biggest relief of my life. Having broken my wrist very badly (worsened by my steroids) and required surgery, I was told I was very unlikely to pass my 4th year. My arthritis was so bad in the lead up to my finals that I was admitted to St Thomas' and again, told by university that I was unlikely to graduate. However, I was so determined to stop living like a student and finally have a proper income for the first time in my life, I declined the offer to defer my year and resit, and I did it! I moved in to a lovely flat with my boyfriend (now husband) and began working as a Junior Doctor in South East London.
Those 2 years are a bit of a blur to me, looking back. I had several bouts of illness, including some serious ones that landed me in hospital for several weeks due to my reduced immune system, but I still loved working and knew that being a doctor was what helped me get through my own problems, as well as being able to relate to my patients and have a greater insight into their experiences in hospital.
In 2015 we left London and moved to Liverpool, where we have been ever since. I got a job in Manchester and my care was transferred there to another wonderful set of doctors who I cannot thank enough for what they do. We tried another two attempts at biologic therapies on an individual funding basis, but my most recent drug failed earlier this year when I had the most severe flare up that i've experienced, and I lost the funding. It was like being back to the time of my initial diagnosis - wheelchair, mobility aids, feelings of hopelessness.
Looking back, I had been struggling since after our wedding in September 2016. Constantly run down, fatigued, in pain and swelling of joints, I tried to push through the winter months at work and gave the new drug a go, but it just wasn't to be.
In April I was so poorly that I decided to mix things up a bit. No drug could help me until something new was approved, and so I thought about what was in my control, and I have discussed this in a blog post here. Throughout this experiment and up to now, I have only been taking steroids (initially in very high doses) but will be starting a very new drug on a funded basis, within the next few weeks.
Today, I woke up, took my steroids and my calcium tablets, and have been sitting at a desk for 3 hours. 4 months ago I had my tablets put in mouth for me as I couldn't move my fingers, and was unable to sit in a chair for more than a few minutes. I feel so grateful that whatever has been the reason for my improvement in health after such a bad time - high steroids vs holistic therapies - I know I have worked very hard to be able to sit and write about this, both from a physical and mental point of view.
I have never been good at talking about myself, about my Arthritis, or about how I feel. I put a lot of blame and responsibility on myself and often push myself too far in order to feel 'normal' or keep up with everyone else. Rheum For Improvement is slowly helping me to realise that what my body does, dealing with an autoimmune disease, is somewhat out of my control. I have the most wonderful husband, very supportive family, and I have the best job and colleagues in the world.
One thing I am very good at is keeping positive, and talking!
With this in mind, I aim to use my experiences of the last 24 years (and a little of my medical degree), to educate people who may know someone with an autoimmune disease, a disease that is not always visible, or anyone who may think about judging someone before they know the details. I also want to connect and create a community with other people who have had a similar time to me, may have just had a new diagnosis of a disease, or anyone that feels a little lost and needs some inspiration.
As my new medication starts in the next few weeks, I shall write an update around October with how it is going, as it needs several months to get going. In the meantime, I am doing some voluntary work with Arthritis Action to hopefully start a support group for younger people with Rheumatoid Arthritis, and I am linked with Arthritis Research UK. I am also constantly researching and trying different holistic therapies, all which I shall post about on the website.
Thanks for reading this very long post. If you made it this far, I am very grateful! Please leave any comments below, share on social media to spread the word, or email me if you have any questions.