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:
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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.
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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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.
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
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
New years is a great time to sit and reflect both on the year gone by, what you have and haven’t achieved, where you are as a person right now but also helps you to focus various aspects of your life that are in your control.
One of my favourite quotes of all time is:
Give me the Strength to; Accept the things you cannot change, give me the courage to change the things I can & the wisdom to know the difference.
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
