Dealing with the unexpected when managing CFS/ME

In my previous post :What activity management means to me in dealing with my CFS/ME I talked about the methods that I use for activity management to ensure I pace myself. Carefully planning out my activity for the week.

But things don’t always go to plan, inevitably things pop up that you didn’t plan for so do you deal with these and try to avoid the push crash cycle?
Continue reading

Advertisements

What activity management means to me in dealing with my CFS/ME

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

My NHS experience with CFS – Part 2 (NHS CFS Foundation Course 1)

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.
Continue reading