Updates galore – life with CFS a glorious fight šŸ˜€


Dealing with CFS ME Yuppy flu whatever it’s name is or whatever version I have is damn hard. There are plenty of things that are far worse don’t get me wrong. It is the fact that even if you tell people you are not well they still say “well you look fine”. Deep sigh, count to 10, 1,2,3,4,5,6 no wait can’t do that my concentration is rubbish. Oh yes, explaining my illness all the time and every time to people who cannot see it so need it explaining in fine detail due to the fact they I have judged me before I have even finished saying ‘chronic fatigue’. I am frustrated I must admit, 5 years of living with a condition that was temporary when I first got it is hard to take. As anyone that’s knows this condition temporary it is not, however the NHS knew best at the time. So I told everyone including my family and work that I was fine it is only a temporary thing and carried on as per usual. Big mistake, should have paid more attention in class Mr. The fact that I was seriously misinformed did not help my health or other people’s perceptions and handling of the situation so please learn from my mistake, sit down and listen, read up. So 3 years down the line I start to realise that this thing ain’t going away and that I needed some serious help. Not only to stay in work but to be able to get out of bed, by that time the road was too slippery and I was fast approaching the bottom of the energy hill. With a small win on the energy side mainly thanks to meeting my better half things improved. Work did not help though, I changed roles and worked longer shifts with a more stressful workload. This hurt my health far deeper than anything else, however I was stuck in the game of trying to get promoted, being the best, helping others. Not bad principles, but for this condition a nightmare. And so with a burning need to do well and to prove I was better I walked back down the slippery downhill energy road but this time with a blindfold on and with my hands tied behind my back. Unfortunately for me and for my other half I just so happened to meet a small yet powerfully venomous spider on our honeymoon. Cue the physical break down that of course my body needed.After  recovering from my honeymoon encounter with the darling spider I went back to work. Long shifts and more work stress meant I was not on any downhill road anymore, I was digging my own mine and I was deep in troubled waters. 

Now I hear you say at this point did no one else see this coming. They might of but most people with a hidden illness / disability / problem become experts at hiding it from themselves let alone from others. Not only that I did not want to be ill again, I did not want to admit that it was happening. And no one at work likes a weak link which unfortunately I saw myself becoming. This added more stress to my day than anything, worrying about making mistakes, falling over, walking, suddenly doing normal things became almost impossible. Everything became hard, just moving, even breathing, cue a trip to hospital. Your all fine it is just your condition playing up = we don’t know what to do for you. 

Most people think that CFS is in your head, damn right it is, it is also in my body too. It is spectacular at how manipulative the condition can be to my body via my brain. How it adapts and changes, even with the most positive of mindsets it will get me down sometimes. However here I am, still in work, just, but fighting for equality which I don’t get, yet. In the end I adapt, I fight, I keep explaining, I keep going because I am lucky to experience this life and I will always find a way to go forwards even if it means slipping and going backwards sometimes. So even though this condition can suck, my measage is simple. The best things have happened to me since I became ill despite the above. I met and married my other half, we now have a fantastic little baby girl who is amazing. We have a life with close family and a few friends around who understand what I and our family deal with most days. I still plan and try and do things and I want to help others to do the same, never give up. Do not listen to the negative people, or the ones who do not understand or even try, find your path, find your flow however low it has got. Work from the point you are at not what you used to be, and start very slow, expect mistakes, setbacks and never jump ahead. Your not alone, keep your head above water and ask for help, it is never far away and pride gets you nowhere when your ill. 

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