Behind Perception (Part 1)- An exhibition challenging the perception of CFS/ME

Behind Perception signEarlier this week I went to an exhibition at Hamilton House in Bristol, with the emphasis on changing the perception of disability in particular that of the perception of ME/CFS.

It comprised of a mixture of visual and written pieces. Each piece gave a moving insight into how this horrible illness effected each of their lives.

In this series of posts I am going to share with you some of the photos I took at the exhibit.

 

 

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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

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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

NHS From Theory to Practice Course for CFS/ME Part 1- Recap and Pro’s of Self Management

In previous posts I have talked about my positive experience with the NHS and having CFS/ME from my:

  • Speedy diagnosis from my GP and referral to Bristol specialist clinic (Link)
  • NHS Foundation course where we got information on: CBT, GET, Activity Management (Link), Rest, Relaxation (Link), Sleep and Stress Management (Link)
  • To my second 1-2-1 where I asked for further information on: Phased return to work (Link) and movement/fitness (Link)

It was in my second 1-2-1 that I was offered to attend the clinics advanced course names from Theory to Practice which was held over 5 sessions, and it is the first of these that I am going to discuss now. Continue reading

The Rainbow in the Storm- Checking in with CFS/ME

Rainbow quoteLying 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

Toby Morrisons 5 CFS Pillars of Health (Toby Morrison UK Seminar Pt 4)

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

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.

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CFS/ME Triangle of Success (Toby Morrison UK Seminar Pt 2)

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.

At the end of last month I went to his UK seminar and it was really interesting, in part one of this post I went through Toby’s Introduction and symptoms of CFS/ME as well as potential causes (Link)

Triangle of success

We then moved on to to talking about what Toby calls the triangle of success, which I have illustrated below.
CFS Triangle of sucess Continue reading