Wednesday, May 29, 2013

Hungry, Hungry Hippos

I think most of my generation in New Zealand grew up watching repeats of Friends and The Simpsons every weeknight. In most situations you can make a reference to either show, and everyone in the room will have seen the episode so many times themselves they instantly get what you mean. Personally every time I hear an oven timer go off, I feel the urge to yell: “My Fajitas!” and when my hair gets particularly curly: “It’s the humidity!” And I know every time one of my friends mentions Hungry, Hungry Hippos that what they’re really playing is the waiting game.

It’s possible another diagnosis may be on the horizon for me. Nothing confirmed yet; it could turn out to be absolutely nothing. I wasn’t going to post about this, until I knew for sure either way but then I realised “the waiting game” is a big part of living with chronic illness. Whether it’s test results, approval for new medications, treatments to start working, or answers to the cause of new symptoms, it feels like we’re always waiting for something.

I went to see my GP to get some forms filled in last Monday, and in the course of the appointment, I asked her to check my blood pressure. I was pretty sure it was low. I’ve been having more and more dizzy spells and headaches lately, especially upon standing up from sitting or lying, and I’ve had a couple of unexplained falls as well. It was, as I suspected, low but we were a little surprised by how low. At the time it was taken, I was feeling fine which suggests it may be dipping even further when I’m having dizzy spells. My GP suggested I should start drinking coffee to raise it, and when I mentioned I’d found drinking water with added electrolytes helped, she checked my blood test results and found my electrolytes levels are also low. I think there are probably a lot of reasons this can happen, but the one that my doctor thinks it could be is Addison’s disease. I don’t know too much about it, and I’m resisting to urge to google anymore because the Wikipedia page freaked me out. From what I have read, I do have all the symptoms, but given that they are all fairly non-specific symptoms and could be attributed to any one of the other conditions I already have, that doesn’t really mean much.

Autoimmune disorders tend to run in packs, so after you’ve been diagnosed with a few it’s not really all that much of a surprise when another one is added. Even so, I have to admit the possibility of this one has unsettled me a little, especially as I hadn’t even considered anything new might be wrong, before my doctor brought it up. My GP said it’s quite hard to diagnose, and she’s on leave for the next month, so for now it’s just extra blood tests, self-monitoring of my blood pressure... and playing the waiting game.

Whenever you’re waiting on something the advice everyone gives is don’t think about it, but as we all know that’s like trying not to think about elephant when someone tells you not to think about elephants. Still, I’m doing my best not to worry about it at least.   

The waiting game sucks. I really need to get Hungry, Hungry Hippos.

Thanks for reading 
Little Miss Autoimmune

Sunday, May 12, 2013

Kindness Is The Cure For Everything

I have been struggling lately. Basically everything in my life apart from my health is going really well, however, I’m in more pain than I have been for a while, and have been feeling quite unwell both from symptoms of disease and from medications. The downside of everything else going well is that I am a lot busier than I am used to being. With my health being so good, it means I am tired and emotional most of the time, something which does not fit very well into being busy.

It’s quite hard to talk about this stuff for a lot of reasons. In part it’s that I find it quite uncomfortable to talk seriously about a lot of this stuff. The fact is I do get quite upset and scared by a lot of the random things my body does, but a lot of the time saying that aloud just makes me feel more sad and scared. One of the other reasons is that talking about things like this often makes people feel like they have to offer solutions, try and fix the problem, or reassure me that the problem isn’t really as bad as it seems. Often it’s not really possible to do those things, and that then makes them feel sad and scared too.

When I worked in mental health, we often talked about not trying to fix people’s problems or rescue them from them, but just walking along side them as they work through them themselves. I think this applies not just to mental health, but to physical health and really to most times of stress whatever the situation or cause. The other day I experienced the most amazing example of this being true.

I was walking home from the bus stop, and I started to cry. There wasn’t really anything in particular wrong. I was cold and tired, and in a lot of pain, but that didn’t feel like enough of a reason to cry because it wasn’t anything new or different. It felt stupid and self-indulgent to cry just for that, especially in public. I was trying to hide it and hold it together until I got home, but this woman saw me from where she was sitting and she ran after me to ask if I was okay.

There’s something very odd that happens when someone is nice to you when you’re not feeling good. Though I tried to insist I was fine, I immediately burst into full-on tears, a reaction that would have been more appropriate if she’d been horrible. The woman asked if I had far to go and if she could walk the rest of the way with me. I refused at first. I didn’t feel I could ask her to go out of her way, just because I was not feeling well. It was cold and raining – no one should have to walk out of there way in that! But she insisted, saying it was not a day that anyone should walk alone.

She took my bag from me, and walked with me the rest of the way home. We talked, and I cried some more. When we got to my place, she asked me if she could say a prayer for me. She asked God to be with me and walk beside me, just as she had walked beside me. She then gave me hug and thanked me for giving her the opportunity to let her help me. I was so astounded to hear her thank me. I was stumbling through an attempt to express the immense amount of gratitude I had for her, and she was thanking me?

I was amazed to have a complete stranger show me such kindness and generosity, and that in itself made the things I was dealing with so much easier to face. In the space of a five minute walk, I went from feeling like I wanted to curl up in a hole and forget everything to feeling like perhaps everything was going to work out okay because there are some truly wonderful people in the world, and that fact in itself is enough to make anything easier to bear.

I realised later that this was quite literally an example of what we had talked about, with walking beside people rather than trying to solve their problems. There wasn’t a way for her to make me not be sick or in pain, but to have her be there with me in that moment when it felt too much was the most powerful and amazing thing.

This was such a profound experience for me, but I hesitated at first about sharing it with anyone. I didn’t want it to sound like a silly overly-sentimental story, or like I was trying to convert anyone into something. In the end I decided that it was an unusual and beautiful story, and that made it worth sharing whatever people thought of it. I put the story up on facebook, and I had many people tell me it made them tear up, or that it made their day.

I want to share this story, because kindness should be shared. So many problems can’t be fixed or cured, but there are very few situations that can’t be helped by a little kindness. The best way I can think of to thank Esther – the woman who walked with me – is to pay it forward and pass on her kindness to others. In most cases I probably won’t be able to solve other people’s problems, just as no one can fix mine. But we can be there for each other, and walk together through the rain.

Thanks for reading
Little Miss Autoimmune