It was about two and a half years ago. I used to be a fitness instructor and holistic therapist, and because of that, I’ve always been into sports and working out. Then suddenly COVID struck, and everything was really strange. Towards the end of COVID, in December, I started noticing when I was doing burpees and things, that my wrists and my fingers were starting to get really really achy. I had noticed a couple of months before that I had tingling in my fingers and that they were blue, so I was given Raynaud’s medication.
So then the swelling started in my hands and fingers, and I just couldn’t do my exercises anymore. Meanwhile, I was still working. I had a couple of clients in the medical profession. One of them said, “You know, your ankle shouldn’t be like that.” What was happening was that my ankles were swelling up and my socks were getting so tight that my ankles were spilling over my socks and my trainers! It was really unattractive, because I’m actually quite tall and slim naturally. I thought, “What’s going on here?” She said “you need to get that looked at.” I thought, “Yeah… no problem,” and carried on. I went on with my life.
We moved houses two weeks before Christmas. Literally the day after we moved, the swelling got worse. It was moving up my legs, and my fingers were like sausages. So, my husband dropped me off at the hospital; because of COVID, it was like a drop and run. They gave me a steroid injection, said they didn’t know what it was, and sent me away. I carried on working, and the symptoms were just getting worse. My husband took me to the hospital again and pretty much the same thing happened.
One of my clients suggested I should try somewhere else, because I might just come across someone that knows a bit more, so I packed a bag and pretended I was visiting a friend in another area, and got dropped at the hospital again.
There was a young registrar there, and when she was examining me, she said, “Oh! This looks a bit like scleroderma!” She said what I could do was see someone called Professor Herricks, who’s the head of the scleroderma society in the north of England. She said that I should try to get a referral.
I had a telephone consultation (not with her – it was with somebody at my local hospital, Salford Royal), which was not very effective. They said, “Well, you really need to be expedited,” and I was expedited to see Professor Herricks. From my first trip to the hospital in December, I finally saw her in May of the following year. That was when she diagnosed me. It was all really unreal, to be honest, because I didn’t know what was wrong with me. I didn’t think it was anything serious.
She took us into a side room after she had done all of my skin score tests and said, “You’ve got diffuse cutaneous systemic sclerosis.” I was like, “… and…?” She said she was really sorry, and I was just like, “What does that mean? Am I going to die?” She said that they would see what they could do for me, but it would be a long process. She said that they might need to put me on a remission drug, but that it would take three months to start working.
My husband and I were in bits, because we just didn’t know what we were dealing with at all. I didn’t really want to look it up online, but I did – didn’t tell my husband.
After that diagnosis, they kept me in the hospital for a week and gave me loads of tests. I was put on the drug but experienced really bad pains in my legs – so bad that I couldn’t walk. I had a special chair that reclined and lifted, I had a frame on the toilet and a raised toilet seat, walking aids… And it wasn’t seeming to get a lot better.
In December of that same year, I saw the professor again, and she said, “Look, I think we’re going to have to go down the stem cell replacement route.” Again, I didn’t know what this consisted of. I thought they were going to take my bone marrow out of my bones with a needle… had no idea.