It was a year ago yesterday that I signed up to WordPress and wrote my first blog entry. A lot has happened over that year, so I thought I’d celebrate by posting some brief highlights and lowlights:
I have tried a several Biologic drugs, after stopping Enbrel last June – Orencia / Abatacept, RoActemra / Tocilizumab and Remicade /Infliximab, as well as switching back to Methotrexate for a short time alongside these. I saw small improvements in fatigue with Orencia but, surprisingly, Tocilizumab was not the miracle Still’s drug for me that has been with others and I continued to deteriorate physically until starting Remicade in March.
Back in July, I was Bridesmaid at one of my best friend’s wedding.
In August I had surgery for another health issue I was having, believed to be caused by longterm Prednisolone use, Hidradenitis. This left me with an open wound in my upper thigh / groin area for a few months and meant daily clinic visits and dressing changes but it healed well and was worth it.
In September I travelled to New York to celebrate another of my best friends’ 30th Birthdays, which was amazing! I would never have managed it without a big dose of Prednisolone, which shows I have a lot to thank it for, as much as I hate the stuff!
October Saw me swap Orencia for Tocilizumab and riding rollercoasters , which seems unbelievable now! Unfortunately, it was down hill from there on and the next couple of months saw my joints deteriorate rapidly until I was eventually admitted into hospital in January / February, with Gastritis and potential Avascular Necrosis of the Hips.
Since being released from hospital in February, I have been on the road to recovery and am slowly getting back on my feet. Looking back to the worst of it I can see just how far I have come. There were days when I couldn’t even move an inch in bed by myself, had to have people wash and dress me etc, and relied heavily on aids and carers. But slowly (thanks to the latest drug Remicade I think, as well as lots of Physiotherapy and Hydrotherapy too) I have regained some strength and mobility. By April, I was able to travel to Dublin to celebrate my boyfriend’s 30th Birthday and recently booked a trip to Paris for my own in July. Hopefully, this next year ahead will be an even better one.
There have been a few times throughout the year when I have felt very low for one reason or another and other times I have felt great and realised how lucky I am to have such supportive friends and family. I’ve tried to stick to my blog ‘motto’ , that there can Still be life with Still’s Disease, filling my time with things I enjoy, from watching films, reading books, painting and writing – to supporting football matches, travelling, going to concerts and having trips to the zoo or to the theatre.
And writing this blog has helped me a lot, in re-accepting my illness after a time of remission and being able to make sense of it by putting things down on ‘paper’. Most importantly, it has shown me that despite the pain and the struggles of the hard times, life goes on and I have to make the most of it.
It may be different, it may be hard, but it’s my life.
Thanks to everyone who has followed and supported the blog during its first year.