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

Stretching for ME/CFS/FM (NHS TiP Course Part 4)

Movement is so crucial to a person, regardless of what illness they may have or not. This is no different from people suffering from CFS/ME/FM, I talk about the benefits in further detail in my previous post: Benefits of Movement (Link).

However exercise or movement as I think is better called, has such negative press in the CFS/ME Communities, and to be honest quite rightfully so in a lot of instances, for example when people are put on non personalised formal GET programs, where the ‘professional’ put more emphasis on sticking to the program than listen to the bodies of their clients/ patients, but instead we should try to add movement into our lives that listens to our own body, a good way is to do stretches. Continue reading

2015 the time to accept the things you cannot change and the courage to change the things you can.

New years is a great time to sit and reflect both on the year gone by, what you have and haven’t achieved, where you are as a person right now but also helps you to focus various aspects of your life that are in your control.
One of my favourite quotes of all time is:

Give me the Strength to; Accept the things you cannot change, give me the courage to change the things I can & the wisdom to know the difference.

Diana Porter Sibyls

Continue reading

Redefining what exercise/movement with ME/CFS (NHS TiP Course pt3)

In my previous post : Benefits of Movement for CFS/ME (link), I talked about some of the positive effects that can come out of using movement/exercise to help elevate some of the symptoms of CFS/ME as well as increasing daily functionality.

But equally several of the group had done GET (Graded exercise therapy) in the past with very negative results, whilst most had had some sort of negative experience of over doing it on the exercise front, leading to a sever crash.

So if on the one hand we are being told that exercise is good for us but on the other from both personal experience and from things we have researched and read up on we know it can have some pretty dire consequences, it seems like we are stuck in between a rock and a hard place. Continue reading

Benefits of Movement for CFS/ME (NHS TiP Course- Pt2)

Exercise has a very bad reputation in relation to CFS/ME, and I did discuss it in a previous post (link) but it was something that was covered in the first session of the advanced NHS course.

The physio who lead this particular part of the session, spilt out movement into two separate elements:
Screen Shot 2014-12-08 at 16.00.46

Where function includes particular tasks, every day things really & exercise is movement with health at the focus. Continue reading

Stress, Mindset & Chronic Illness (Toby Morrison UK Seminar Pt 3)

Whilst Toby clearly stated that CFS/ME is not all in the mind, he emphasised the negative effect stress has on those with CFS/ME and a lot of chronic illnesses, and from personal experience I can defiantly vouch for stress causing my symptoms to flare up.

Stress is the #1 cause of chronic illness in the world.

We can be our own worst enemy. People with CFS/ME can often stop doing things because doing them causes anxiety and to be frank it is truly quite scary.

This can be from:

  • The anxiety that doing the thing in question is going to cause you some pretty serious payback
  • You wonder if you have forgotten how to do it
  • Run over various outcomes in your head about how it is going to go and,
  • How people are going to react to you.

Continue reading

Intro to Toby Morisson Road to Recovery (UK Seminar Part 1)

Toby Morrison has been one of the most important parts on my road to recovery from CFS/ME (which is by no means over!). He is a true inspiration to all suffers and really understands what we need to hear in order to help ourself, being a ex-sufferer himself.

I stumbled Upon Toby by accident on youtube (Link) and it was the turning point in my ability to help myself, it put pacing and baseline in a way that I could understand and make work for me. His Facebook groups, free webinars and videos not only gave me really useful tips, but always put a smile on my face, Toby just radiates positivity which is truly infectious.
Continue reading

12 messages you might not know that I use to keep positive – Day 5 Invisible Illness Week

So today day 5 of the invisible illness awareness week I wanted follow on from my post yesterday; where I went through how having a positive mindset can have very real profound impacts on the body and physical health.

Yesterday I discussed various scientific studies and the science behind mindset on the body, but today I want to go down a different route and talk about how I personally keep on top of my mindset.

Wellness Wall Continue reading

ME/CFS Index

As my number of posts increases I thought it would be useful to create an index so it is easier to see older posts:

Personal Journey/Stories

Top Tips

My NHS experience with CFS

CFS/ME Research