Tag Archives: Bristol CFS/ME Clinic

Mindfulness practice: The Raisin (NHS Mindfulness course week one part 2)

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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!

Background

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.

The Practice

We were each given a couple of raisins, we were told to really look, smell, listen, feel and taste them, simple right? Continue reading →

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

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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 →

Types of Pain (NHS TiP Course Part5)

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Pain is an all to familiar symptom for those suffering from CFS/ME.

During the course we learnt about different types of pain, which I found pretty useful as it helped me understand why a lot of pain killers don’t work for me (or the majority of ME sufferers).

Types of pain

Acute pain

I always thought that this implied severe pain, but from a medical point of view this simply refers to new pain, who knew? I certainly didn’t.

You fall down the stairs and sprain say your knee.

This pain is classified as acute, the pain meant to be a warning sign that there is a problem and potentially damage. It is there to
get us to pay attention- maybe for us to seek help or rest- warning us to slow down to heal up.

Acute pain only tends to last for maximum of 3-6 months basically how long it takes for the tissue or bone to heal.

If the pain is there after this period after it has had time to heal, it is no this regular damage.

So after 6 months after the fall, you knee has heeled but you are still in pain.

This pain is no longer useful – it doesn’t relate to a particular broken bone or damaged tissue, it has now become Chronic Pain.

Chronic Pain

Chronic pain can easily consume your life, and I am guilt of it doing that at times. Especially if you keep trying to figure out why you are in pain.

Seeking help can be helpful, talking to your doctor is useful to discuss different opinions and to rule out any acute issues.

As chronic pain doesn’t relate to a specific injury per say the usual pain killers that have helped previously that target specific swelling or injury will be a lot less effective.

So what is this chronic pain?

An analogy they used which really made sense to me:

In an organisation as a lot of different incoming information, using lots of different people to process this information.

Support staff filter the information and pass only the relevant and important pieces to the CEO/Boss. As the CEO can only process so much information.

If the support staff all called in sick, the CEO would have to process all the information, they would get overloaded and would struggle to sort between relevant and irrelevant in an efficient and timely manner.

Well you are the organisation, when you are suffering from chronic pain your brain is not filtering out the irrelevant information for you and so you feel pain.

But what does this mean?

Well I found the analogy above really helpful, it doesn’t mean that my pain (or anyone one with chronic pain) pain isn’t real!

Pain is a really difficult thing to live with and it can wear you down, make you not sleep or be able to get out of bed in the morning, make you feel like you are walking on glass with every step you take.  So why have I found this distinction useful?

  1. When doing stretches etc I know I am not causing any damage.
  2. Different pain killers will more or less effective, as you need to go from targeting specific injury to ones that block the messages in your brain.
  3. Enabled me to come to terms with the pain, and in some ways that as made it easier to live with, use guided meditation and breathing exercises to help.

If you liked this post you might want to check out some of my previous posts:

Or for a full list of my CFS/ME related posts check out my CFS/Me Index

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

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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 →

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

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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)

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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

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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 →

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

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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 →

My NHS experience with CFS – Part 6 (1-2-1 Fitness)

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After I had attended the foundation seminars held at Southmead which covered a variety of issues including: Activity Management, CBT & GET (Link), Rest & Relaxation (Link), Sleep and Stress Management (Link); I then attended a follow up with my CFS specialist, this was very much a session lead by me where I could ask for help and guidance with the issues I was really struggling with.

Before this session I had a good think about what it was I needed the most help with from her. The two areas I found I wanted her advise on the most were: Returning to work/ Phased return (Link) and the best way to increase my physical fitness/ exercise. Continue reading →

My NHS experience with CFS – Part 5 (1-2-1 Phased Return to Work)

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During my first appointment at the North Bristol ME/CFS clinic (based at Southmead Hospital) my OT explained that the way the clinic works was that once my diagnosis was confirmed which occurred during that appointment (Link), I would be invited to attend their CFS/ME Foundation Course. Following the completion of the course I would then have a second one to one with her.

The foundation course consisted of two 1.5 hour long seminars which covered very basically an array of management strategies:

  • Seminar One covered: Activity management, CBT, GET (Link)
  • Seminar Two- Pt 1- Rest and Relaxation (Link)
  • Seminar Two- Pt-2- Sleep and Stress Management (Link)

Once I had attended these seminars and digested their content, I would then attend a follow up with her, which would be lead by me, I could get specific support on what I felt I needed the most. Continue reading →