It's Hard Being a Guinea Pig

It's hard being a guinea pig.  Sometimes you try something and it works great, you're really glad you took the gamble.  Other times it really doesn't work out that well, it's painful and a little scary. 

Unfortunately at the moment,  I'm in one of those experiments which falls into the latter category. 

Please note at this point that if you were ever in doubt about whether or not to try your own experiments as I do, you need to know that it's not for the faint hearted, literally or metaphorically,  and that I've undertaken these experiments completely at my own risk.  I don't mind putting myself at risk,  it's my choice and I make it willingly. It won't be for everybody. 

This experiment is all about my one outstanding problem: whilst I now have everything under control, I haven't managed to return to a "natural" weight. I still weigh considerably more than I should and I know that long term, this really isn't good. With careful diet (Paleo), and the other treatments I describe on this blog, I've been able to return to a normal life, but I know that, in my case, if I am to lose a significant amount of weight, it will require my insulin production to return to a normal level and insulin sensitivity to improve. Thus, I began my latest experiment. 

After four years of relative control: stable weight,  predictable sleep,  moods controlled,  gastro normal,  2 weeks ago I decided to try changing my meds. I've changed them many times before but I've seldom had a reaction as bad as this, apart from when I tried to reduce my metformin dose earlier this year with similar consequences (once again, an insulin related issue).

For the first week this time,  everything was relatively normal,  but then things started to get a bit strange,  and now they're clearly a long way away from where they should be.

So here's a list of the symptoms I'm experiencing at the moment:

• - 4lbs weight gain in 2 weeks
• - insomnia back with a vengeance
• - severe gastro issues including diarrhea, feeling sick,  needing to go to the loo more often than normal
• - bloating and feeling as though I'm being inflated from the inside out
• - anxiety
• - depression and mood swings (crying for no reason, getting really worried about things which don't matter etc)
• - blurred vision

It's not a good place to be. 

Clearly my insulin levels are through the roof. 

What am I going to do?  Well I'm only 2 weeks in.  I've bailed on trials in much shorter timescales (as with the metformin reduction) but although I'm horrified by the weight gain and I'm in pain,  I'm going to stick it out for at least another two weeks and see what the situation is then.  I feel better today than I have for the previous few days.  Maybe things will improve. 

One thing is does remind me though is how hard it is to be a guinea pig.  I'm taking risks with my health that I really shouldn't be even contemplating.  I'm also risking a detrimental effect: making things much worse than they are. 

How do I feel about this situation? 

I'm angry: angry that I'm compelled to do take such drastic measures,  but I feel I have no alternative. I know that a lot of women simply manage their symptoms and accept that there are some things which won't change. Personally, I can't do it.  Accepting that I have to live in a body which is sick, and just put up with it is not an option.  If I broke my leg,  it would want it fixed.  I want to fix this syndrome. 

I'm angry that I viewed as unreasonable for not being able to roll over and just put up with the problem. No-one should be asked to do that.

I'm also angry that the medical profession is so far behind as to be counter productive to my care.  Not only do they not understand,  they don't even properly acknowledge the syndrome. 

This leaves me no choice but to go out on my own.  There is no one I can rely upon to give me good advice,  and certainly,  no one who can fix me. Therefore, I'll do it myself,  and in the process,  I'll do it for thousands of other women facing the same diagnosis,  and for those many more who are ill but have no diagnosis at all.

Being a guinea pig sucks. It's painful, disruptive and it makes me ill. By the same measure it's  awesome. My future is in my hands. I get to find out new stuff. Every experiment gives me new knowledge, even the bad ones are productive in this regard. I'll push on, knowing that every step I take is in the right direction for my research and that, as a personal journey, it's the best I can do.