Acceptance then Action
I really struggled to accept that I had CFS – I think its half because I wanted to be better straight away, which isn’t an option with CFS. But finally I started to accept my illness, and look for ways in which I could help myself, as I didn’t want to have wait until my appointment with the North Bristol CFS/ME Centre which was around 5 months away.
Don’t get me wrong I still have the occasional moment in which I think “Surely I don’t really have a debilitating illness, come on just snap out of it” but of course you can’t just snap out of it.
During my bed bound days, I spent a lot of time doing research on different private treatments, including but not exclusively:
All of which are extremely expensive setting you back £600-1000, but promising results. However when looking for reviews online especially youtube, opinions were very mixed some raving about how it had cured them, to those who called processes a ‘cult’, that they had made them worse. I was so confused by all the differing of opinions and not wanting to spend that sort of money on something that I was so confused about.
But two things really helped me to two a corner and just really made sense (Follow the links to go to the relevant post):
1. Nutrition (Link)
2. Toby Morrison (CFS Health, Melbourn AUS) (Link)
Gluten Free Adventures & M.E 
I’m pleased that being gluten free is helping you, as it does for many people with thyroid/adrenal/edocrine disorders. It’s a shame that you are content to accept the diagnosis of CFS/ME as I feel you are restricting your recovery when more could be done for you with proper testing and treatment.
Hi whilst you are entitled to your own opinion over your own diagnosis, you really shouldn’t be telling other people that theirs is wrong and intact there illness does not exist.
It was once I really accepted my diagnosis that I started to improve, I am now finishing my chartered accounting exams and am phasing my way back into full time employment, through managing my symptoms.
Good post, this is a multimodal illness and diet most definitely can improve symptoms for some people. I presume you’ve been tested for coeliac disease? TTG blood test and colonoscopy with biopsies? If you improve in the absence of gluten specifically, might be worth considering this as an exclusionary alternative. Having said that, despite these tests possibly being negative, this does not discount the possibility that diet does play some role in helping others. This applies to virtually any disease known to man. Given the heightened immunological sensitivities of the CFS cohort, it is not surprising that some may have a low level intolerance of gluten (gliadin). Some may be placebo effect but I’m all for whatever works individually, particularly natural interventions and ones that don’t involve $£ without category A evidence.
I totally agree! Acceptance then action! It took my 6 months to accept I was ill.
I completely agree! 🙂 Diet plays more of a role in our health (or lack of it) than most people give credit for! I’m also gluten free (and now vegan) and slowly getting my life back from ME! 🙂
Thank you so much for inspiring me! I’ve nominated you for the Very Inspiring Bloggers Award! Have a wonderful day! http://mysparklylife.co.uk/inspiring-blogger-award/ xxx
Hi! Just wanted to say gorgeous blog! Lovely and inspiring to a newbie like me.
Dusty
Agree on the importance of acceptance and then researching real options to try to claw your way back to health. Good luck and hope the GF isn’t too bad! 🙂
I have to say that I love your blog, because my brother has this disease and there’s a big possibility that I will have it too. I’m doing my exams and all that, and I’m sure this blog will help me a lot. ❤
Acceptance is so important for any diagnosis. I’ve been sick forever, but when I stopped spending all my energy fighting my diagnoses and trying to act “normal,” my health (both physical and mental) actually started to improve. 🙂 Finding things that worked for me and accepting when I need to rest and when I can’t do things, whether from fatigue or pain, was really important.
Hi Hannah, I am about to start the process of self-referral and self-funding to Bath fatigue services (as the services in my area have a very long waiting list and I don’t feel they have as much specialist understanding). I also wanted to start Toby’s online program, but am worried that doing both will get confusing if they tell me different things i.e my routine for the day or what movement I should be doing. I read on your blog that you did both (but with Bristol services), so was wondering your thoughts. I’m mainly housebound and have been off work for a year and a half, so am desperate to get some more guidance on recovery. Thank you. P.S Your blog is great xx
Thanks Laura, not sure about the bath service but Bristol was great although long wAiting list too, I did TM program and Bristol service along side each other and found them very complementary x