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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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

A Reflection of my chronically ill 2014

Another year has gone by, and now is the perfect opportunity to reflect and build a plan for next year.

I think whether you are suffering from a chronic illness like myself or as fit as a fiddle it is really good to look back and reflect and have some achievable goals for 2015 (Link- Coming Soon).

So I have decided to compile a list of questions to help me review my previous year, if you fancy going through and doing this exercise I would love to hear your responses in comments or feel free to just put pen to paper 🙂

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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

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