Having a disease for which there is no cure is not an easy or pleasant experience. My illness is not a declining one, i.e. I will not keep getting worse until I eventually die. But there is no treatment available on the NHS, very little money researching any, and so very little support available to me. So I’m stuck in limbo.
I’ve tried a lot of “complimentary medicine” treatments, none of which have worked. Every time another one fails it takes me longer and longer to pick myself back up from the wave of depression that hits me after my hopes gets dashed yet again.
Last summer I’d decided I’d had enough, I just couldn’t take any more, I needed a break. So I took one, an eight month long one, and now I feel ready to try something else. My parents, unaffected by the crushing weight of false hope, have already got several possibilities lined up.
The first is a course of fatty acid supplements, this is championed by Professor Basant K. Puri. There’s an accompanying book, which I’m reading at the moment (see picture below) which explains the science behind it is great detail. This appeals to me because it’s backed up with actual science; double-blind clinical trials, case studies, and research. Plus all I have to do is take a few tablets, it’s not dramatically life limiting.
The second option currently being floated around is a strict regiment of supplements. This has been devised by an American called Dr. Jacob Teitelbaum (Dr. T for short – which immediately makes me think of Mr T. from The A-Team), who has had ME himself. Here is his website if anyone is interested: http://endfatigue.com.
This is also backed up with science, which I like and which makes sense to me. The down side is it would involve me taking 37 tablets a day to begin with! I’d be rattling! All those tablets don’t come cheap either so there’s that to consider.
I don’t know exactly what I’m going to do yet, but having options is a good thing. If anyone has any advice, I’d love to hear it.
Until next time. Rhosyn.