In my previous post I gave an overview of my first session participating in the mindfulness course offered by the NHS Bristol CFS/ME clinic (link), this post will focus on one particular practice we did in this first session, one that I have aptly named: The Raisin!
This is quite a common practice, it is classified as an informal as you can do it with any food or drink as part of your day, my understanding is that an informal practice is one that you don’t have to set aside to do an activity specially, it is more about doing things that you do everyday mindfully.
We were each given a couple of raisins, we were told to really look, smell, listen, feel and taste them, simple right? Continue reading
I have had CFS/ME for around 18 months give or take, and I can no means say that I am recovered (still on that journey!) but what I can say is that my symptoms and my functionality has increased ten fold.
I have gone from being house bound and being off work at my worst, only being able to be out of bed for short periods of time and with the help of my partner…. to the current day where I am able to work 3 days a week have something that resembles a social life.
So what has helped this change?
No I haven’t taken a magic pill (I wish!) although I do take a variety of supplements .
The key is managing this condition in the best way you can.
Activity management has been so key to my recovery and that of many of my spoonie friends.
However there is no one size fits all with these conditions at all; everyone has different things going on in their lives, children no children, work no work, and the list goes on!
So how do you work out your ever so illusive BASELINE, one thing that helped at the every beginning was to categories everything I did as either: High, Medium, Low, Rest or Sleep (Something I was taught at the the North Bristol CFS Clinic – Link) Continue reading
Lying on the sofa in PJ’s for the third day in a row might seem like a luxury to non sufferers and it used to be for me as well before I got ill. However my PJ’s and a cheeky hot chocy were accompanied by searing pain, tingling in my arms and legs or at times the inability to even concentrate on the most mind numbing TV.
So my current stint on the sofa hasn’t been all that luxurious, the forecast has been filled with severe weather warning of: impenetrable brain fog, with pain showers throughout ranging from an annoying dull continuous drizzle to a full out thunder storm that brought a tear to my eye.
But though all the fog, the drizzle and the storm there has been a rainbow; evidence of the rays of my progress with this condition trying to burst through. Whilst these rays are not strong enough to banish the fog and the storms, the rainbow to me symbolises hope and makes me feel content and one might even go so far as saying happy with my situation. Continue reading
So in previous parts of the seminar, Toby talked briefly about what CFS/ME is and how and potential causes (Link), Toby’s Triangle of success: Survival, Accept, Adjust, Believe & Achieve (Link) and the effects of stress and mindset to recovery (Link).
All the above are great, but how do we get past the acceptance stage and start adjusting, how do we keep a positive mindset and hope if there is nothing we can do to help ourselves or we think we have no hope of ever getting better?
In most cases this simply is not true, there are things we can do to help ourselves, it may not mean recovering fully from CFS/ME but giving you access to a better quality of life. Continue reading
As part of the North Bristol Trusts program for CFS/ME they can send you on various courses, to begin I was sent on the foundation course, which consists of two 1 1/2 hour long sessions.
I wanted to document the whole process, as I really had no idea what to expect and I am aware that a lot of people do not have access to such services:
In the first session we talked about: Symptoms, CBT, GET, Activity Management (Link). The second session I have split into two posts, this being the second the first however was mainly on rest and relaxation (Link).
The main focus on this session however revolved around Sleep Management and then talked a little about Stress Management at the end.
Please click the link below if you wish to download the foundation course 2 hand out provided: Continue reading
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