Tag Archives: chronic illness

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

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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

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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)

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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)

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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 →

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

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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 →

Pain Scale

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This is a really great post explaining pain scale, I have all to frequently got confused and like her have rated my pain too low on the scale, this gives clear defined explanations as well as some examples which makes it easier to rate pain effectively.

Pain Warriors's avatarInvisible Pain Warriors

Everyone has likely been exposed to the pain scale at some point in their life. You know, the scale from one to ten, that you are supposed to use to explain your pain level to medical professionals.

For those who live with chronic pain, we quickly become VERY familiar with this scale. We see it in hospitals, in doctor’s offices, and those in pain management see and use it on a very regular basis.

The pain scale is important because it is how we explain the severity of our pain to doctors and nurses and hopefully, if used correctly, it helps to guide them in determining appropriate treatment options.

The problem with the pain scale is that there are many different versions and the scale in and of itself is very subjective. What one patient might rate as a 6, another might rate as a 3. That is because most…

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

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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 →

The Ugly Truth of Bad Day with CFS… But its ok!

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Today has not been a good day in fact that is putting it quite mildly…But thats OK!

When I say I have had a bad day I don’t think people really get it, and before I was a sufferer of this ridiculous illness I wouldn’t have understood either.

Friends, family co workers and pretty much most people you come into contact with only see you at your best, where you grin and bare the pain or other symptoms.

I hate letting people know how bad it can get sometimes and the only one who really sees this is my partner, who really is my night in shining armour! This is for a variety of reasons from not wanting to seem weak, feeling embarrassed not wanting people to feel sorry for me or think of me as their sick friend. Continue reading →

An interesting afternoon at the CFS/ME Research Collaborative conference (Part 1)

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Earlier this month I was invited to attend the joint patient & researcher session at the UK CFS/ME Research Collaborative (CMRC) conference.

This conference sounded really interesting, I was invited to attend for free and it was literally on my door step so it was a bit of a no brainer. Continue reading →