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.
Trying to find your way
Having this horrific condition condition, these symptoms never cease, over time you can start to try to increase functionality, you think you are moving forward, only to for doctors to tell you there is nothing wrong (although that didn’t happen in my case), being bewildered by all the people offering ‘miracle cures’ that are horrifically expensive, and disappointing when nothing seems to work, all whilst feeling like a burden to those around you and half of your old self.
Progress & set backs
CFS/ME is one of those conditions where often it is one step forward and two steps back or even three or four!
Your on your journey to get more functionality in your life in the aim to reach that ever so illusive ‘recovery’. You try changing your diet, rest, change everything in your life, you push you crash whilst trying to find your ever impossible baseline.
You do to much you crash, your bone crushingly exhausted, your devastated by this relapse often becoming bedridden. But you breath and believe that if you slow things down and realise this is only a set back and you take one day at a time.
You build from the progress you have made and make tweaks to your activity management (Link), make further changes, realise that whilst the people in your life might not understand what you are going through, there are plenty of people who do, you join various support groups locally or online.
You begin to build a new life, you make small achievable goals for yourself and celebrate the little successes you have achived, you gain hopes again for the future based on what you can do now rather than what you used to be able to do, and actually you have actually taken two steps forward and one step back.
You accept where you are right now, you have gained consistency in your life by being disciplined about what you can and can’t do. You learn to rest and gain more functionality in your life, your body becomes more flexible and you yourself become more flexible being able to enjoy the things you can do, and learn to be greatful for what you do have and can do rather than what you can’t.
You look towards the future and realise you will have set backs but taking them for what they are just a set back to your journey forward.
If you liked this post you might enjoy:
- Demystification of meditation
- NHS CFS Foundation Course 2- Recap & Rest
- CFS/ME Triangle of Success
- The Impact of Mindset on Physical Health
Or for a full catalogue of my CFS/ME related posts check out my CFS/ME Index