CFS/ME in words – CFS/ME Awareness Week 2015

As part of CFS/ME Awareness week a group of us from the CFS Health Centres came together and thought of all the words we associated with having this condition that effects approximately 17 million people world wide, one of the members so eliquently created 5 pieces of word art to illustrate the different aspects of CFS from our point of views.

Symptoms

In previous posts I have talked about various symptoms of CFS/ME but this illustrates just how many there are, but also some of the consequences of these symptoms, like the loss of relationships with friends and family, jobs and even ones sense of self.

Along with feelings of hopelessness, the fear of how long you are going to feel like this and if it is ever going to get any better.

Stages of recovery 1 Continue reading

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The Corrupted – A collection describing the different stages experienced with CFS (Part 1) – CFS/ME Awareness Week 2015

Averyl Ritchie is a wonderful artists I met in a CFS/ME group.

Her Corrupted Collection goes through the different stages of how she has experienced CFS/ME and it is a very beautiful depiction of what I think many of us have gone through.

Longing For The Girl She Used to Be

Longing For The Girl She Used to Be

This is the first painting the artist painted to express her pain. This dancer is grieving. She has lost her identity. She no longer can live her passion of dancing, and sits alone, sad and rejected.

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CFS/ME Photography – Awareness Week 2015

CFS/ME is a very real and debilitating and often life shattering chronic illness.

Some of my spoonie friends from the CFS Health Centre have created a number of projects to raise awareness of this horrible condition.

The first of which is a great project where several of us shared a pictures we had taken and what they meant to us.

Mine was a picture I took when I was in Sri Lanka just before I got really sick:CFS Fav Pic Me Continue reading

How friends & family can help people with chronic illnesses

Tomorrow kicks off CFS/ME awareness week and I will be posting each day mainly creative things that us suffers have created to raise awareness.

But to kick off the week I thought that this would be a great way to get the ball rolling, in one of my online groups we created a document to give to friends, family or anyone else who it might be useful to; of things we thought that those around people with chronic illnesses could do to help make our lives easier.

It is hard for us suffers but it is really hard for those around us too, often those around us feel helpless and don’t know how they can help, this is a list (obviously not exhaustive) but to get people thinking of the little things they can do to help.

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Dealing with the unexpected when managing CFS/ME

In my previous post :What activity management means to me in dealing with my CFS/ME I talked about the methods that I use for activity management to ensure I pace myself. Carefully planning out my activity for the week.

But things don’t always go to plan, inevitably things pop up that you didn’t plan for so do you deal with these and try to avoid the push crash cycle?
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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