So I have to admit I wasn’t quite as enthusiastic and with it at the second part of the NHS CFS Foundation course, as I had way over done it earlier in the week, we have all been there at some point.
Like parts 1 & 2 of my NHS experience with CFS, guiding from my experience with my GP and assessment (Link) and the first foundation seminar (Link), this post I will talk through what I got out of the second and final foundation seminar, through both what leader taught us and from comments from other service users, as well as providing you with the handouts that I received on the day. Continue reading
My NHS experience with CFS – Part 2 (NHS CFS Foundation Course 1)
As I mentioned in a previous posts (link)I was diagnosed with CFS and was seen by specialist clinic within about 9 months of symptoms first appearing. Which is really fast compared to other peoples experiences, I attribute this to an amazing GP.
So I really wanted to document my experience with the specialist NHS clinic, because before I got seen I had no idea what to expect, and I know so many people struggle to get any treatment for CFS.
I had heard very mixed reviews from different people, which I think might be due to what different people expect to get from the clinic – there is no miracle cure to CFS/ME so don’t expect that.
I went in with an open mind and was very glad. In this post I will talk through what I got out of the first foundation seminar, through both what leader taught us and from comments from other service users, as well as providing you with the handouts that I received on the day.
My NHS experience with CFS – Part 1 (GP and referral to specialist clinic)
I know that a lot of people have had very bad experiences with doctors and the NHS, however this really hasn’t been the case for me.
First step for me was having a fab GP, she was supportive from the outset and explained that she thought I had CFS, but had to do a load of tests to rule everything else out.
It took from Nov13- Jan14 to get through that processes, as I needed to have a couple for re-tests done, after all came back within range ‘normal’, my GP gave me the CFS diagnosis and referred me to one of the 14 specialist centres in the UK for the development of services for people diagnosed with Chronic Fatigue Syndrome/ME. Continue reading
Demystification of meditation
There is a lot of hype and mystery about meditation, however it is really doesn’t have to be complicated, full of odd poses, incense and candles, where you have to completely clear your mind from everything to gain some sort of inner peace.
However it can be so simple and it has helped me so much in many ways, during my recovery process with CFS it has been invaluable.
Ways in which meditation has helped me:
- Rest breaks
Pacing is a word that when you have CFS/ME you become very accustomed too and a bit sick off if I can tell you the truth.
I was also a bit confused about what it actually entailed, knowing it was something I should be doing but not knowing what it actually involved.
But it turns out that what I have been doing using a modified version of Toby Morrison’s credit system, as I have outlined in a previous post (link), is exactly that all pacing involves is keeping a track of your actives and trying not to use all your energy all at once just because you feel good at the time. Yes I am doing something right 🙂 .
I am a big fan of you tube, especially when suffering from poor concentration watching a video review etc is so much easier than reading a long webpage.
At the time I was watching a video on ‘Tapping’ as someone had recommended it to me as a way of getting more energy / concentrating. ( It didn’t really get it to be honest, but everything is worth a shot’ after it finished in my recommended videos section was this video and it really changed my life:
I had read time and time again that getting your diet right had helped many people suffering from CFS. And it kind of makes sense its the food and drink we put in our bodies that gives us sustenance and energy, so if you get the balance right there its bound to make a bit of a difference.
Nutrition etc isn’t an area that I had a lot of expertise in so I decided to see a nutritionist. It is important to find one that knows about CFS/ME otherwise I don’t there isn’t an awful lot of point.
I found the website below particularly helpful, it explains a bit about CFS and nutrition but most importantly it enables you to find a nutritionist in your area that has a specialism in the area:
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.