One of my spoonie friends wrote about her CFS/ME journey as a comic strip and I absolutely love it, it talks about her journey from the very beginning to right now, she is by no means recovered but her functionality has improved and continues to do so as time goes on.
An estimated 250,000 people have CFS/ME in the UK, 1,000,000 in the USA and 17,000,000 worldwide.
But what do these 17 million people look like? Well a group of us who are on Toby Morrison’s online program thought it would be great to raise awareness to create a video & a collage of a load of our faces.
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.
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.
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: Continue reading
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 🙂
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
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.
Where function includes particular tasks, every day things really & exercise is movement with health at the focus. Continue reading
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
So in previous parts of the seminar, Toby talked briefly about what CFS/ME is and how and potential causes (Link), Toby’s Triangle of success: Survival, Accept, Adjust, Believe & Achieve (Link) and the effects of stress and mindset to recovery (Link).
All the above are great, but how do we get past the acceptance stage and start adjusting, how do we keep a positive mindset and hope if there is nothing we can do to help ourselves or we think we have no hope of ever getting better?
In most cases this simply is not true, there are things we can do to help ourselves, it may not mean recovering fully from CFS/ME but giving you access to a better quality of life. Continue reading
Whilst Toby clearly stated that CFS/ME is not all in the mind, he emphasised the negative effect stress has on those with CFS/ME and a lot of chronic illnesses, and from personal experience I can defiantly vouch for stress causing my symptoms to flare up.
Stress is the #1 cause of chronic illness in the world.
We can be our own worst enemy. People with CFS/ME can often stop doing things because doing them causes anxiety and to be frank it is truly quite scary.
This can be from:
- The anxiety that doing the thing in question is going to cause you some pretty serious payback
- You wonder if you have forgotten how to do it
- Run over various outcomes in your head about how it is going to go and,
- How people are going to react to you.