Good and bad.

I think these tablets are finally starting to have a good effect on me. Its mainly the little things, like less hair loss and less mouth ulcers. But I've also noticed that I've been feeling less nauseous (except yesterday when I ate the scrapings of the bowl I made butter cream in, but I think that was to be expected) and I've been sleeping a lot longer... Now that's reasonably inconvenient, as I still can't sleep until maybe 2/3am, that means I'm sleeping through my alarm at 10am until gone 12. Which is annoying.

I'm going to the doctors next week, as I've been getting heart palpitations. It's been quite fast since I've been ill, when I get it checked at the doctors and in the hospital (the last time I was in there my resting heart rate was 120. Its meant to be around 70.) Anyway, I've now been feeling them, and it's woken me up a few times in the night, and made me feel breathless, and so I'm going to go to the doctors and get it checked out. I hope I don't get sent to the hospital again... I have a hair appointment that day and I want to get my hair cut! (I'm getting a serious restyle so my hair won't be too badly affected when it starts growing back)

Also I have to ask the doctor if I can borrow a wheelchair from somewhere... The only way I'll be able to go back to school is if I can get around in a wheelchair, since I still have severe fatigue (because they're pretty sure there is something else wrong as well) and the wheelchair they have in school is unfit for human use. Fair enough, I'd rather not use it if it's going to collapse under me.

I do have theories about what else is wrong but it makes me sound like a hypochondriac, but people who know me know that I'm not one of these people who thinks they have everything. Like my Dad said, a lot of my symptoms are transferable to so many conditions (fatigue, nausea, joint pain etc) but these are the weird things, the sort of things I noticed and thought were weirs but didn't think anything of it, like being really sensitive to pain (touching my arm causing a lot of pain) and blotchy skin. I'll explain my theories later, but it does make so much more sense when you explain it. Of course I hope I don't have all these things, but at the same time I could deal with it because I know about it. Just like I was pretty sure I had lupus before they even mentioned it was possible, so I wasn't shocked when they said it was, and got over it pretty quickly.

Continued struggles

Since we're getting closer to diagnosing the lupus, it seems like my joints are getting worse. I don't think I ever really thought that my joint pains were lupus related, the main ones anyway.

For example, the shoulder that was bothering me doesn't so much any more, but my hips and knees seem worse than ever, and I genuinely think they're related to the back, as I had some hip pain before I became ill, and my rheumatologist thinks my back problems could be a rheumatoid arthritis, which would be very odd if there weren't any other joints affected.

I personally think that my walking would be much easier if I used crutches when I was in a lot of pain, but I have had a bit of a battle with my mum about this. Apparently most people with illnesses and disabilities have problems with their parents about things similar to this. My mother seemed to think that

a)I just "fancied them",

b)that using them would make me more disabled, and

c)that she basically won't accept it until a doctor says to me "you need to use crutches"

which is silly because:

a) I don't want crutches, they'd be very inconvenient, how would I carry anything?!

b) They make me LESS disabled because at the moment I can barely walk a few aisles of a supermarket (although that's partly the fatigue from the lupus) because my legs are very painful and

c) They won't do that, because they don't know how much pain I'm in, and they don't want their patients to be deteriorating.

Anyway, that's my rant over, and onto happier news. Someone I know who's had a similar chronic pain problem for many many years is today having surgery which they hope will correct her problem :) She's been suffering for such a long time, its very good news that they can help her :)

Return from the trip.

The trip was good, but long. It was a lot of walking around compared to my normal sort of routine, but we managed to get to a few outlet malls, which made it all better.

There was a lot of driving involved, about 3 hours a day, which doesn't sound like a great deal but when driving makes you feel so ill and being sat down in one position for a long time causes so much pain, it seems a lot longer than it is. We stopped every hour/hour and a half maybe, so each 3 hour journey seemed like it took all day.

We stayed at my Uncle's for 2 nights and at a hotel in Cambridge the other night, and I didn't sleep too well any of those nights. I kept waking up from pain, and feeling ill, so I didn't particularly wake up refreshed, but I rarely have since I've been ill, since one of the main symptoms is extreme fatigue, and since I was getting up much earlier than I would normally, that didn't help.

However, even though I was getting up earlier, I couldn't fall asleep any earlier at night, so since I've been home I've been trying to catch up on the sleep, but was completely unsuccessful until today. On Tuesday and Wednesday, I woke up before my alarm went off, but today I slept until gone half 12.

Also, today is 2 months I've been taking my hydroxychloroquine. This should be the window where the medication starts working. Wish it luck.

J'arrive.

Well, we've made it to Cambridge, after many stops along the way. Our hotel is very nice, and I've discovered that sitting in the car for a long time annoys my hip and knee, so we had to stop a few times for that reason. What I have noticed, is that a few of my symptoms seem to finally be improving. I think I might be growing back a little bit of wispy hair at the front, even though my hair is still falling out...
Also I think the light sensitivity of my eyes is improving, as I'd usually have to wear sunglasses in the rain, which I didn't today, and my mouth ulcers are reducing as well.
So all in all, I think this is the beginning of these tablets working. Still a long way to go, and for some reason I doubt it'll end all of my problems but c'est la vie, it all helps.