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

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Types of Pain (NHS TiP Course Part5)

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

Behind Perception (Part 3)- An exhibition challenging the perception of CFS/ME

In my previous posts I talked about Behind Perception an exhibition, 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, the first of which I shared in Behind Perception Part 1 (Link) and Part 2.

This final in the  series of posts I am going to share with you some of the photos I took at the exhibit.

Continue reading

Behind Perception (Part 2)- An exhibition challenging the perception of CFS/ME

Last 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, the first of which I shared in Behind Perception Part 1 (Link).

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

Continue reading

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.

 

 

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