Wednesday, April 9, 2014

Flares, Fears and The Future

Life has been... too much recently. Too fantastic. Too overwhelming. Too awful. Too scary. Just too much.

I've had some really awesome things happen lately. Things that made me feel really good, and really proud of myself. I've met new people and had some great opportunities come my way, and for the first time in... well possibly forever... I've felt like yes, I know what I'm doing. Not only that, I'm good at what I'm doing. I've really liked myself, and felt happy. Not happy but... or liked myself except for... 

But the thing is, all of the big opportunities and good things happened at the same time. Which meant I was pushing myself to keep up with them all. Which was fine - good actually, because in a way that made me feel even more awesome. "Look at me go!" I was thinking. "No disease is going to hold me back!" And it truly wasn't. Though even before things got busy, my body had been telling me things weren't right. I had one week where I kept falling asleep in accidental naps every time I sat down. I pretty much lost an entire day at one point. 

And then all the deadlines etc. fell at around the same time, and true to form I didn't flare in the middle of the stress, because the adrenaline was carrying me through. I wasn't having accidental naps anymore, but now I wasn't getting enough sleep either. Pain, not being able to relax, and a few other symptoms were keeping me up all night. 

Naturally, I flared the minute the stress stopped. The day I handed in my play, my arms doubled in size with soft-tissue inflammation. By the evening, my joints had joined the party, and I could barely open my mouth as the side of my face had formed a lump where my jaw joint was swollen, and my other joints especially my spine were screaming in pain. Then the muscle spasms and tremors kicked off, and I found myself teaching a class, but not able to get up from the chair I was sitting in.

But I was still happy. I was still pleased with all the good things, and the fact that I was coping so well with the bad ones. It was terrifying when I realised I couldn't stand up, but I kept calm, came up with a plan for what to do about it and successfully put it into action. Even though I was getting sicker by the day, I was managing to keep on top of everything. 

When you're chronically ill, you're so often told to be grateful, and it's so annoying when other people say it. It's said as if it's something comforting, but all it does is make you feel guilty for feeling bad. When it comes from inside you, though, and not from someone else putting it on you, it can actually help. I was so thankful for the amazing things and people in my life - so I couldn't eat solid food? Look at how many yummy things I could turn into soup or smoothies, and really just having food at all is something to be thankful for isn't it? So I couldn't walk? I had amazing people willing to give me lifts places, or offer me advice and company on facebook. So I was in a sh**load of pain? How lucky was I to have had my joints be in remission for the last couple of years! This level of pain used to be my life all the time. And who could forget that the only reason I was flaring in the first place was that I'd just had a whole load of awesome things happen? I had nothing to complain about.

Then 4am on the Friday morning, I woke up in a lot of pain. When I sat up, I started vomiting, then fainted, and it kind of went downhill from there. Basically every time I was upright, I passed out, then vomited when I woke up - usually all over myself. In the morning proper, my dad took me to the doctor, but it was a real struggle for me to stay conscious long enough to get to the car, then when we got to the doctor's I collapsed in the parking lot and had to be wheeled inside, where I proceeded to vomit and pass out some more. I couldn't even keep water down, which meant I was dehydrated and my pee looked like a cup full of Fanta.

Believe it or not, I still felt happy. There were points, where I was screaming inside my head "This has to stop! I can’t do this anymore!" and I did start to cry because I felt so bad about vomiting all over the floor (and possibly one of the nurses) But I still felt really grateful for everyone taking care of me, and for how nice they were being. I was thankful I’d made it through all the deadlines before this happened, and everyone was assuring me I would be feeling a lot better soon. I was. They gave me a shot of steroids, and the wonderful thing about steroids is that though they have harsh side-effects, they work well, and they work fast.

So, with my newly-mostly-behaving steroid-filled body, I carried on. There were no more deadlines, so I wasn't pushing myself so hard. A good thing since I'd managed to pull several muscles during my escapades. I was already planning the next projects, but I didn't feel quite so good anymore. I started to feel unsure of myself, and even the simplest decisions like "do I want to talk to somebody on the phone tonight" felt too hard, and motivating myself to do anything was difficult. The things I had been looking forward to, didn't feel quite so exciting anymore.

For a while, I thought that I was feeling that way because I was actually unsure of the things I had coming up. But then I realised it had nothing to do with anything in the future. A lot had just happened, good and bad, and I hadn't had time for my mind to catch up. This wasn't a Pollyanna-type situation - I wasn’t forcing myself to feel positive, happy, or grateful, that's just, for whatever reason, what I was feeling. I kind of suspect I hadn’t really connected fully to what was happening, and had been living in a sort of pleasant denial. Then the reality of how sick I'd just been caught up with me. I remembered that no matter how well I manage things, I have a serious illness. While most of the time that's going to be difficult but do-able, sometimes it is just going to be scary and awful and there's no getting away from it.

I wrote the above about a week ago, along with several other posts which I’ve decided are too personal to post. The gist of them was basically that I ended up in quite a dark place for a while. I saw my doctor yesterday and she said it’s normal to feel depressed after a big health set-back. I felt like I was losing control of my body and it was hard for me to feel calm and positive about that, because it wasn’t an irrational thought. I did lose control of my body. My fears about the future, and the possibility of my diseases progressing were all brought to the surface, and it was hard to reassure myself when I knew that all of the things I was afraid of could easily become a reality. My doctor also pointed out that I’ve had some bad reactions to steroids in the past, and it’s likely they were influencing my mood. It’s also likely that my hormones were a bit out of whack and my Vitamin D dose was due.

The good thing was I recognised my thoughts were becoming a bit dire, and I sought help. I’m lucky enough to have friends and family who were able to be there for me, in person, over the phone, on facebook, and in some cases without even actually doing anything. Just in knowing that I could contact them and they would understand helped me. I’m still not back to myself, but I am feeling better, and my doctor is arranging for me to see a counsellor to talk through some of the fears this has brought up. I’ve been a little reluctant to talk through these issues in the past, as I’ve noticed many people’s automatic response is to try and reassure me that the things I'm afraid of won’t happen. This isn’t helpful, because it’s just not true. The things I'm afraid of may or may not happen, and I’m by no means saying I definitely think they will, but assuring me they definitely won’t is just an empty promise. What I need help with is not dwelling on those fears, not deluding myself into thinking nothing bad will ever happen to me.

Right now I am (mostly) in control of my body. I am functioning, and living a pretty good life. I don’t want to miss all the awesome things my present has to offer, just because I’m too focused on what the future may or may not hold. 

Thanks for reading,
Little Miss Autoimmune


  1. You get a gold star for self-care! It's not easy recognizing when you need help, and it's not easy asking for help. Well done, rockstar!

  2. Helen, sure sounds like you have had a lot going on. hope you are starting to feel a bit more back to "normal". I know all of us guys with autoimmune conditions have a new kind of normal but I think you know what I mean.

    1. Hi Lee, thanks for your comment. I've been doing better in the last few weeks. Mostly back to normal - or my normal, as you say!