This time last month, things were pretty good. I was planning a phased return to work in September and looking forward to celebrating our engagement with a family party and making a start on plans for the wedding. I was even considering trying out an old hobby of mine – horseriding – just for half an hour a week, to give me a bit of pleasure. My blood results were good, I felt strong and pain-free, able to reduce both my Prednisolone and Morphine at a sensible rate – it felt like I might get a taste of normality again.
I was getting a lot of headaches and migraines, which my GP doctor put down to Sinusitis and treated with a course of strong antibiotics. I thought that was the end of it, until I started getting other symptoms – fevers and chills, throat pain, muscle tenderness, dizziness and fatigue. Again, I spoke to the GP and was told that it might be a virus and to sit it out. Then over a weekend I suddenly became much worse and realised the niggling ache in my hips had worsened too, to the point where it was difficult to get out of bed or stand up. By the time Tuesday came round – infusion day – I could barely walk and my left elbow was once again hot and stiff.
I still thought it was a virus that was setting me back a bit, but when I got to the ward and had my bloods taken etc, the nurses decided to put the infusion on hold until my Rheumatologist had seen the results and spoken to me. We waited hours. When he finally came down it was with bad news, not the news I’d have expected (that I couldn’t have my infusion due to infection) but that he felt I was no longer responding to the Infliximab. My blood results were pretty shocking and suddenly all the symptoms made sense. I don’t know why it didn’t even cross my mind, I just thought we’d got on top of the Still’s.
What’s more, my Rheumatologist feels we’ve exhausted all the treatment options available to us. I know there are some drugs we haven’t specifically tried, but I’m guessing this is because something similar didn’t help. He doesn’t know what to do with me and so feels it’s time to get the opinions of some other specialists in the field, including a Professor Moots in Aintree. It’s possible there may be a drug trial I can take part in or even that we try a combination of two biologic treatments, although this is unchartered territory. Until then, we stick with Infliximab and it’s back up with the Prednisolone *sigh*.
Obviously we are devastated at the news that the Still’s has flared again; it feels like a massive kick in the teeth, especially with all the hard work I’ve put in with Physio etc and how far I improved. I saw a lady using a zimmer frame on the ward later on and promptly burst into tears. I don’t want to go back to that again. January – April were such hard, dark months for us, but I pulled through because I could see a light at the end of the tunnel. It’s harder to see this time round and I trust it less, after having it snatched away so quickly.
Anyway that was almost a week ago. I improved for a day or so after increasing the steroids, but seem to have reverted back to flaredom over the weekend. Yesterday, I could barely move until about half past four and couldn’t get comfortable in that time either. I can’t even increase my morphine just yet, until we know if the extra steroid is helping.
So that’s how things stand right now. Needless to say, returning to work has gone out of the window for good, while I focus on getting myself well again and maintaining that wellness. Maybe I expected too much of my body too soon?