Random Pictures Will Occur On This Blog - This was taken by me of the lake (Vierwaldstaettersee), Brunnen, Switzerland
Recently I was thinking about my endless search for the answer to my afflictions. When I was a child, I always assumed I would get better. If not today, then tomorrow and if not tomorrow, then next week or next month or next year. As I got older, I never lost that hope. It never occurred to me that I wouldn't someday recover and be 100% back to the way I was pre-M.E.
It was not until I was 19 years old that my conviction started to waver. I was supposed to be going on a 'year abroad' as part of my university studies. I remember thinking: "I can barely cope with getting to lectures, climbing the stairs in the library and dragging myself and my washing home on a weekend, how would I cope with having to move to a foreign land, with no support network and being expected to cook and clean for myself on top of doing my studies?". When push came to shove, the university college gave me medical dispensation from having to go abroad for the year (which was an integral part of my degree). The dreamer part of me regrets that, as I missed out on a lot of shared experiences with my close friends, as well as the opportunity to become semi-fluent in one of the languages I was studying. The realist in me knows that I would never have managed it and would probably have been flown home and have had to leave university altogether. As it was, by the end of the 4 year degree, I was so sick, I became completely bed-bound followed by being housebound for a while.
It was this experience that made me realise that maybe I would never be back to my pre-M.E. self. I started to consider the possibility that maybe this was as good as it would ever get. It was, and is, a scary thought to contemplate. It's over 10 years since I graduated, and over those 10 years I have had waves of searching for hope, for a cure, for a remission...
As a result of complete rest (I had a carer deal with my affairs, so I didn't even have to turn my mind to them), I did have a small window in the 10 years where I felt I was well enough to work. Funny thing is, when I look back I realise I was not well at all! It strikes me as funny, because I convinced myself I was well enough and I actually believed it. So much for positive mental attitude and all this stuff about if you believe something it will be or come true. The more I worked, the sicker I got. I had no other life than work, as I was simply too sick to go out or socialise, and all I would do is eat something, shower and go to bed. On the weekends, I used any energy I had to get my clothes washed and ready for the work week. I stated down the slippery slope and I really did myself a mischief! I would NEVER recommend this course of action to anyone with chronic illness, whether it be M.E. or not. If your body is already very sick, then you definitely do not need to add to the burden. Of course this leaves the issue of money/finances - I had to give up any independence, any money of my own and start relying on others. I do not recommend that either, but if you have to, I would opt for the latter rather than the former option.
Since this bout of working, I have not recovered. In fact, I think it is fair to say I have gotten progressively worse. It is emotionally painful for me and my mum (who has been my main carer all these years) to think and talk about this. I just wanted to be 'normal' and to be able to take care of myself like my healthy-ish peers. I hate being a burden to other people. In my quest for relief, amongst other things, I have tried supplements, dietary changes, better pacing, exercise, meditation, losing weight, juice fasting, the Hippocrates Diet and now LDN. My biggest success was the Hippocrates Diet and E3live. For that reason, I am going to try doing that diet, as much as I can, once the better weather starts. It is not an easy task to follow that diet - requires sprouts to be sprouted and wheatgrass to be grown and lots of juicing, but it did do something highly beneficial to me, so I will grit my teeth and try to prod my family into helping me and give it another go.
Interestingly, my body's reaction to both juice fasting and the Hippocrates Diet is to give me the equivalent detox reaction I have seen on television in people who are coming off heroine. We are talking about: severe sweating, shaking, puking into a bucket type detox. Bearing in mind that I have NEVER taking illegal drugs, I find the herx to be quite bizarre! It makes me wonder, what the hell is in me? At the same time, I find it incredibly reassuring that my body is doing something, and after I get through it I actually do feel a lot better (in less pain, less stiff). I almost want to induce more of that, even though it is horrible at the time, because I feel like it's the most response my sluggish body has ever given me since getting sick.
On the searching for treatment suggestions theme - recently a dear friend of mine suggested I look at the Bob Beck Protocol. I had not heard of this, so it has become one of my 'research projects'. I have also been reading Phoenix Rising a lot (they have the best forum I have come across for M.E.), and trying my best to understand and absorb some of the treatment suggestions. One of the frustrating things is that my brain finds it so hard to understand large chunks of text and scientific explanations. I was trying to get my head around the Methylation Protocol... ha! I felt like such a dunce. I have decided that any experimentation with Methylation will have to happen in July and August - class is over. I can barely cope as it is, and if a treatment gives me a herx/worse before better reaction, then I need to be able to deal with that at home.
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