Part Two Of My Diagnosis Story: Back To The UK
Last updated: October 2021
I left off Part 1 of my diagnosis story just before I was forced to wheel myself onto a flight back to the UK.
I bid farewell to all of my adopted Shanghai family except the two who had kindly agreed to accompany me to the airport.
Unfortunately, the block of flats did not have an elevator so I had to make my way down 5 floors the difficult way. One of my glamorous assistants was in front moving one leg at a time to go down the stairs while the other supported my body weight so I did not fall to my death.
Thankfully my amazing friends had a lot of patience (unlike the very fed up taxi driver who was waiting outside) and we managed to finally make our way down to the airport
The flight home
I had arranged for a wheelchair service with the airline to help my broken body on and off the plane. But when I arrived without my own wheelchair the assistant sighed in my face as he begrudgingly dawdled back to his office to fetch one.
I think this man had it in for me from here and I was almost not allowed on the flight at all. After pushing me through security he decided to call up the head office at the airline to warn them that he didn't think it would be safe for me to board the plane.
Luckily, his English was so bad that whilst he was trying to explain this, the woman on the other side of the phone asked to speak to me to translate. I was able to tell her that despite what he said I had a fit-to-fly letter from my doctor and was very unlikely to die on board. The worst they could expect from me would be a few groans and moans if I needed to hoist myself up and use the toilet.
Despite all this, I managed to board the plane, and luckily an air hostess took pity on me and bumped me up to first class. I imagine this experience would have been a lot better if I wasn't sitting in pain for 16 hours and too juiced up on painkillers to drink any of the free champagne but it was a nice taste of the high life nevertheless.
Touching down in London Town
I still remember the concerned looks on my parents’ faces when I wheeled up to meet them in arrivals. I'm not quite sure why but I remember feeling guilty that my condition was having such an effect on my loved ones. Looking back now I realize that it was not my fault and I am simply lucky that I have people in my life who care about me. I guess it was just one of the mental tricks that AS likes to play on our minds.
The first big shock I experienced after returning home was not health related at all. When I made it back to my parents' house I opened my suitcase and saw that all I had packed was 3 pairs of underwear and a couple of football tops. I was so off my head on pain killers when I packed it that I thought that was a sufficient amount of luggage.
Reunited with my rheumatologist
When I finally got to see the rheumatologist, my knee was so swollen and hard that she had to ask for a second opinion. She had to make sure that it wasn't muscle that she would be stabbing into if she was to drain it (little did she know that I skip leg day way too much for that to ever be a possibility).
When she did insert the needle, the huge amount of pressure that had built up inside my knee threw the needle flying into the air and my knee did an incredible volcano impression, spurting out inflammatory fluid at a very impressive rate. I was told that although my symptoms indicated that it was AS, I would need confirmation from an MRI scan before they could officially diagnose it and start medication.
Luckily this time around I was able to get myself onto an MRI machine to get the scan I desperately needed. It still took two attempts as the first one revealed I had a number of slipped discs and the radiologist decided to focus on this. This meant the doctors could not diagnose my AS as those aspects of my spine were ignored.
Fortunately, the second attempt was a success. Well as successful as finding out one has a chronic illness could be. Although I was forced to listen to "Staying Alive" by the Bee Gees whilst I was in the scan, which was not the most comforting background noise to have.
Unfortunately, I was not handed my medicine in a goodie bag on my way out of my appointment as I had hoped. Instead, I was told that I had to try a few more months of using cheaper methods of treatment while the hospital applied for funding for my biologics. This was not the news I wanted to hear as it meant continuing with anti-inflammatory meds and pain killers which weren't doing a great deal for me.
I decided to take matters into my own hands and research how I could improve the state of my body without biologics. I changed my diet by avoiding gluten and dairy and adding a ton of anti-inflammatory foods. I also met with a physical therapist and we planned out a stretch routine for me to do every morning, which I still religiously follow to this day.
These things helped bring down my inflammation tremendously and reduced the stiffness and pain I was experiencing to such a point that when I did finally get my biologics, they were able to get to work relatively quickly.
All in all, it was 8 months before I was able to leave the house without a mobility aid. I boldly decided to make my first trip out of the house crutch-free to Notting Hill Carnival, a Caribbean street festival in London.
I was very proud of myself for finally being able to walk by myself and have a bit of a dance. Although this was a pretty intense return to using my legs again and put me in bed for a few days, it was definitely worth it.
After starting my biologics and making some lifestyle improvements, I have been able to really keep my condition under control. Don't get me wrong, fatigue and pain still very much terrorize my life regularly. But I am so grateful that the vegetative state that I was in was not a permanent situation and I have been able to reclaim a lot of my life back.
I have come a long way from that scared and confused 23-year-old lying in a hospital bed in Shanghai. When I look back, I start to see the funny side of a few things that I went through, even if they didn't seem all that hilarious at the time. I feel sorry for what my younger self had to go through, but I am grateful that I learned a lot of lessons along the way. I think in a way it has all made me a stronger and better person.
To anyone reading this who has been recently diagnosed, I hope my story will help you realize that this is just the start of your journey. You are not alone in experiencing the feelings that you have right now. No matter how bad it is for you at the moment, things can and will improve. Keep on fighting and pushing through and you will see the light at the end of the tunnel.
Has changing your diet helped manage your pain and flares?