After everything that happened at the hospital yesterday, I was feeling pretty confused and disheartened, plus I was absolutely exhausted. Hospital visits do this to me – so much energy is put into preparing myself for them: thinking of the things I need to discuss, prioritising a host of symptoms, making notes and then trying to make sure I express everything that I need to clearly… and then in the appointment itself, taking in what the consultant says, absorbing and digesting it, understanding what it means for me and thinking about the consequences of any decisions on the present and the future.
When I’m flaring, I go to these appointments with a sense of anticipation, that maybe my doctor will have a new solution, a miracle up his sleeve that will make me feel better – something solid I can take away with me there and then. Although, realistically, I know that this isn’t how the game of treating Still’s Disease goes – it’s more like snakes and ladders, just as you think you’re getting somewhere, you get sent sliding back down to the bottom – so perhaps I’m setting myself up for disappointment each time. We try to keep our discussions positive, but at the same time you can’t shake the feeling of uncertainty about it all and I always leave feeling like I’ve been through the wringer, with my mind whirling and body exhausted.
However, I woke up this morning feeling more like myself, determined not to let this latest setback get me down; yes, the things we discussed were worrying and confusing but at least I was feeling more able to do certain things and surely I need to make the most of that even if I can’t explain it. Maybe the bloodwork is just taking its time catching up, I don’t know, but I was happy just to carry on and know that my doctors were keeping an eye on things.
Morning and early afternoon passed by fine; I’d managed to get a few things done when I noticed I was getting quite a bit more pain in certain joints. Half an hour later, I felt it was bad enough to require an additional dose of painkillers (I try and stick to 2 doses a day) and as my heart was racing too (156 is high even for me), I decided to have a bit of a nap. I must have dozed off because it was teatime when I woke up, but I quickly realised that the pain had gone even worse, so much so I couldn’t lift my head from the pillow or move my arms from under the duvet, every inch of my body seemed to burn or throb with pain.
In the end, I needed help to even sit up in the bed and later to hobble about. My boyfriend’s parents were understanding, but I felt embarrassed and ashamed that they had to see me so helpless, especially when it came out of the blue. How can I explain it to them, if I don’t understand it myself? There are a number of thoughts floating round my head right now – could it just be that I’ve been building up for another Still’s flare these past few weeks, has the Methotrexate effected me in some way or maybe even the Orenia? Or has my mind been playing tricks on me all this time?
Do you think it’s possible to think yourself better, even if you’re not? I was soo looking forward to starting Orencia that maybe I built my hopes up so much that I believed it was going to help and expected nothing less. Perhaps I imagined the tipsiness, the tingling and the new strength and energy, getting through the wedding weekend on optimism and willpower alone. What if it has just been a case of mind over matter so far, and now that I’ve been faced with the reality of my bloodwork the illusion is shattered and it’s just not enough to keep the physical things away anymore..?
There are no easy answers. All I know is that I haven’t hurt like this for a while and I’m at a total loss what to do.
Ps. Most of this post was written the morning after, I was just too sore to even type last night.