Friday, March 1, 2013

Choices (Part One)

When you have a chronic illness you face a lot of choices. For treatment, do you go with a mainstream medicine, restrictive diet, or an alternative therapies path? Within each of those options, there are a whole host of further choices to make. Which medicine? Which diet? Which alternative therapy? Then there’s the question of how long you give each option to work, before moving on to another. Each option has many pros and cons. If you choose medication, you may be facing some pretty heavy-duty side-effects and long term risks, but a natural or alternative method does not automatically equal safe either. Many natural therapies and diets come with side effects and risks too. Then there’s the fact that whichever option you choose may not work, in which case permanent damage from the diseases is a risk. 

Any path you take, there will be someone who judges you for it, or who will make well-meaning suggestions that you should have taken another. I have irreparable damage to my body that shows I haven’t always made the right choices. Or perhaps another way of looking at it: I have irreparable damage in my body that shows that none of the available options have been successful for me. 

If you have more than one illness, the choices get even harder. Recently I had to choose whether to stay on, or go off a certain medication. Basically, the medication was making my systemic symptoms considerably worse, while at the same time keeping my joints stable. Going off it would hopefully mean the systemic symptoms would calm down, but the trade off was that my joints would more than likely begin to progress again. It was a tough choice, but in the end I chose to go off it, and I’m just hoping that it was the right one. I probably won’t ever be able to say for sure, but for the moment I feel okay about it.

Sometimes, I have to make choices about which symptom I can cope with being worse on any given day, because the things that help one disease will make another worse. Something as simple as clothing choice can mean choosing which type of sick I’m going to be. If I get too hot, my tremors get worse, but if I get even a little bit cold my hands and feet turn blue and I sometimes start to have difficulty breathing. If I have too much exposure to sunlight it means rashes and generalised flares, but long sleeves in summer means overheating and lack of sunlight means vitamin D deficiency.

In terms of diet, I have tried many things, and each came with a list of benefits and trade offs. Going vegetarian helped my joints and inflammation levels, but my anaemia, stomach problems and PCOS got worse, and I developed migraines. Going grain-free helped my stomach problems, but my joints got worse, my inflammation levels shot up, and my bladder problems increased. Basically it comes down to cutting out any one food group, means eating more of another, and that can come with downsides for some people. I often joke that I am just allergic to food in general, as there are very few things I can eat a lot of without getting some ill effect. So while there are many cases of these diets being successful for other people, they are not right for me.

I often hear people preface their success story with “if it works for me, it can work for anybody,” or a statement of similar meaning. This never seems to be based on anything in particular - just a strong belief that theirs is the right path. The fact is, just as not every medication works for every person, not every diet or alternative therapy will work for everyone either. If your path is working for you, that is fantastic. Keep doing what you are doing. But if you want to recommend it someone else, maybe try prefacing it with something like: “this worked for me, maybe it might work for you too?” because this is a much more realistic assessment of the situation.

Overall, my choice is a combination of methods. There are a number of food groups which I limit to avoid flares of particular symptoms, though the only thing I have completely cut out is gluten. I am on some medications, and I haven’t ruled out adding more to the mix, but there are some that I have stopped due to the side-effects well outweighing the benefits. I take some natural supplements with the support, and encouragement of my doctor, and although there are some alternative therapies that I will never try again because of bad experiences, there are others that I’m willing to give a go. I’m a big believer in the power of positive thinking, and if it’s possible to cure yourself with either laughing or cathartic crying, I sure do enough of both to give it a decent shot.

All of these things combined help to keep me feeling okay-ish, but they’re not a cure. For me, it is a balancing act, and quite a precarious one at that. Perhaps I would have success if I chose one path or the other, and committed to it fully, or perhaps the whole balancing act would tumble down and I’d be left sicker. Either way, I’ve resolved to be okay with whatever choices I make whatever the outcomes turn out to be. I’ve also resolved to be okay with the fact that whatever I choose to do, there will be someone who thinks it’s the wrong thing, or who thinks their method is better.

Until I find someone who can successfully cure diseases with chocolate, I’m probably never going to agree that one method is better than another. Instead, I tend to fall back on my favourite place to get advice, The Sunscreen Song:

“What ever you do, don’t congratulate yourself too much or berate yourself either – your choices are half chance. So are everybody else’s.” 
Advice, like youth, probably just wasted on the young – Mary Schmich (featured in Everybody’s Free (To Wear Sunscreen)) 

Part two coming soon... 
Thanks for reading, 

Little Miss Autoimmune

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