Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold on all we can of our lives, I’m becoming aware that I, for one, often find myself combatting a lot of damaging self-judgement.
I was diagnosed with CFS (ME) this year and diagnosed with Fibromyalgia last year. I also have ambulant cerebral palsy with secondary hemiparesis. Nevertheless, I managed to be generally involved in life before CFS and fibromyalgia, despite significant difficulties with other disabilites and invisible illnesses.
The impact of CFS on my life was the final straw. I’ve personally found it harder to deal with than most of the above conditions. Just in case you or someone you love is bashing themselves up emotionally, this is a reality check: CFS and the symptoms you are experiencing are real, they are serious, and though invisible to many, they can impact a life as much as more visible disabilities. We can make ourselves feel worse by over using that malicious would ‘should’. ‘I should be doing this or that’ can be a killer.
Now it can be impossible to leave my room and my husband and I are trying to move house to a home to be that had no usable kitchen or bathroom! I have to laugh or I’d start rocking in a corner.
Last year — when fibromyalgia was first mentioned by a neurologist, I was standing for parliament and local ward elections with no constituency support team — I was told for the first time I should always have paced myself because of my cerebral palsy and how someone with my CP uses 3-5 times more energy to do anything! Obviously, with CFS or fibromyalgia this creates a perfect storm. At the time I just laughed a bit manically. Because I felt honor-bound, I continued to answer thousands of emails, go to demos, marches, hustings, interviews, stalls and leafletting missions while never expecting to win but wanting to shift the political conversation. I did well, coming collectively second locally and with 9.9 % getting one of the best results in the country for the party I stood for. I don’t just say this to boast – though of course I have an ego, I was a politician. I say this because afterwards I could hardly leave my bed for many months and had to have basic tea making facilities in my bedroom. I was in so much pain it was an act of will to want to live, but the pressures of life did not stop.
The pain was so bad that even after I became active again, the fibromyalgia symptoms masked type A flu and pneumonia which made me seriously poorly and ultimately hospitalised with another long recovery. I was then told I had CFS. It is not the first time I’ve missed the fact I had pneumonia and asthma or landed in hospital because other symptoms and an obsessive need to act like normal and push through all barriers prevailed. I don’t say it to suggest pushing yourself this hard is good. Frankly, once the brick of CFS hits it is hard for me to wash!
Pushing ourselves too hard: is this self-punishment?
I say this because almost everyone I know with CFS, Fibromyalgia and other chronic conditions is their own worst critic and with the general ignorance among many non-sufferers that can be saying something. Many of us seem to push ourselves to the limit over and over again. We tend to be people that can be very self-critical and this is made worse by how we are perceived by others and by unhelpful help from medical profession.
When I can be moderately active, there is massive payback. It feels like having the flu forever and can feel like I’ve been running a marathon just doing the washing up. It can be difficult to keep my sense of humour and keep calm, especially in the face of others’ ignorance. In addition, there is little to no help offered to most of us because the condition is not well understood by most medical practitioners. Even though NHS choices website states clearly that exercise can make CFS symptoms worse, most GPs and pain management specialists advise it. When the plug feels like it has been pulled out of us it is not us being lazy. It is not a choice. It can’t always be mind over matter. It is alienating, isolating and frankly depressing. It can feel like a prison sentence. It’s time to increase awareness, useful research and support. Our lives matter.
No More ‘Should’
I am going to banish the word ‘should’ from my vocabulary. It is now a swear word – worse than a swear word because I use some of them. We may have a swear box and everything. ‘Must’ is the same. Unless it is life and death these words and others like them are banned to be replaced by ‘could’, ‘decided to’, ‘would like to’, ‘would be good to’. You get the picture. The world has problems letting us rest, letting us decide where we place what energy we have and understanding when we don’t have energy left. Deep down I find it hard to understand or accept too, but I am learning not to beat myself up with all the shoulds and other self-judgement. There are times when I will be a warrior woman, but I plan to choose my fights and put my needs firmly in the frame.