I spent the weekend being looked after by my Mum at her house while my Fiance was working. It was lovely to spend some time with her but, of course, sad too after the loss of Lucy. It did give us chance to talk and grieve though and I feel more at peace now.
I did something really stupid on Saturday. After sixteen years of taking Prednisolone, I somehow forgot to take my 50mg dose in the morning and soon started feeling grottier than I had been. Thankfully, I realised what I’d done some time in the afternoon and took them straight away, but boy did I suffer that night. The pain and fevers crept right back in and I was worried I’d lose a grip on all the progress I’d been making.
I woke up feeling okayish yesterday morning and the day seemed a reasonable day in general. This morning, however, I have woken up with excruciating pain in the whole of my right leg – from hip to toes. I had felt it niggling away in the night, but when I moved the leg first thing it was like waking a beast. There are dull pains, sharp pains, spasms, waves and other sensations running through the joints and the bones. A hefty dose of Oramorph has taken the edge off a little (I’m not tempted to swear now at least!) and I can have some more soon, but I am a bit concerned what this means.
You see, the pattern with my Still’s Disease is that I get a Systemic flare first, with the fevers, rash and random illness (Pericarditis, Neutropenia, Pleural Effusion to name a few); then a few weeks later the Joint flare hits big time. I was hoping the considerable dose of Prednisolone would keep things at bay this time, but this pain does not bode well. Plus the weird bubbling sensations I’m getting could well be the start of some fluid accumulation. I’m trying not to worry about things before they happen, but after things got so bad at the beginning of the year it is hard not to. For now, I’m resting up and back to using a stick since the leg doesn’t seem to want to bear any weight.
Book Recommendation: Another Alice by Alice Peterson
For the past few days I have been reading an autobiography of a woman who was diagnosed with Rheumatoid Arthritis at the age of 18ish and thought I’d share it with you. There are some differences between life with RA and Still’s Disease, but I still felt that I could relate to a lot of her experiences and found it an interesting read – one of those that makes you want to shout ‘I know exactly what you mean!’ She had a tough time of it, especially as she was a budding professional tennis player when symptoms started, yet I didn’t find it depressing just realistic. There is a section on her tennis career at the start; but, if that doesn’t interest you, it is quite easy to skip ahead to the RA story as chapters have obvious titles and you don’t miss anything from doing so. Equally, bear with that section if you can; I did and felt it summed up that sense of loss that comes with initial diagnosis, especially as a young person.
This could also be a good book to share with friends and family that want to try and understand what it is like to go through life with an illness like RA or Still’s. She explains her pain, her alienation and how she adapted and got over her feelings of shame/embarassment towards such an illness really well.
Give it a go and see what you think,