sick and tired of always being sick and tired

Hi, so as you all know I have been suffering with ME/cfs and POTS for a fair few years now. ME has no ‘cure’ and unfortunately there is no treatment under the NHS at the moment. Therefore unless we do nothing ever and don’t have a life of strict unrealistic pacing (which isn’t really possible with a child and a life) everything else is researched and funded by ourselves such as holistic/experimental ways to possibly cure or Atleast try to improve my current level of ME.

For those that don’t know, Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune system. People with M.E. experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy. ME/CFS is not a form of depression or psychiatric illness or as some people in the past used to believe ‘All in the head’. If I was going to make up an illness I’d Atleast make one up with more understanding, sympathy and treatment.

If anyone wants a better understanding a great place to start is:

https://meassociation.org.uk/

https://www.actionforme.org.uk/get-information/-is-me/what-does-me-feel-like/

As most of you know- My life is really limited at the moment . I used to do loads and be a highly active human fI still try to be!) and find it really frustrating that I can’t do much. But my body fails me . Now, most days I can only do bare minimum like school runs and essential daily life admin shite etc-sometimes not even these things . Im lucky that I can still do some things sometimes -compared to those with severe ME. But I really want to get my life back- or Atleast some of it ! I miss being able to work; being on benefits and skint is shite; go on nights out; weekends away; exercise; being able to do everything Patrick wants me to do with him-full days out/ holidays etc etc, sports, and just generally do anything I want without having extreme PEM and having to spend days either side preparing and suffering.

There is no official cure for ME and I’m not promising that by helping me financially that I’ll manage to be cured. But at this point I’m willing to try anything.

Unfortunately everything available to trial is extremely expensive! And being reliant on benefits i have zero disposable income month to month.

Some experimental routes I’m looking into include:

CFS lifestyle overhaul programmes with life coaches etc who have recovered themselves.

these range from £500-£3000!!!!!!!! And include full lifestyle, diet change often starting from doing nothing at all- literally nothing except eat and sleep and rest and building physical and mental tasks up very slowly; as well as lots of brain retraining tasks etc.

red light therapy;

hyperbaric oxygen therapy;

perrin lymphatic drainage massage;

hormonal balancing route;

adhd route (I’ve been waiting 2 years for my referral from the nhs).

I’ve been toying with the idea of doing this for years now. But have always been too embarrassed / proud to ask for help with money (a Yorkshire and a catholic) and dubious of the experimental options because there are a lot of folk cashing in on our desperation. But I’m in a flare up at the moment and I thought screw it! I’d rather be embarrassed than feel poorly and miss out on 80% of my life ! I’m hoping that one benefit to come from COVID is that long covid is basically ME:cfs and so the huge impact on the economy and work force of that will force there to be more funding out into research and possible nhs drugs, cures and treatments for us !!

thanks for reading my massive essay. Even if everyone I know donated £1 that would make a massive difference in what I’m able to do .

love,

Claire

Xxxx