CFS and CBT the failure of mainstream medicine.

Still amazes me that this is the main treatment for CFS in the U.K. It is the only way the CFS clinics operate even though it clearly does not work in most cases. I have discussed this with my last consultant but they were tied to this model by the national guidance. This flawed study told practitioners/ sufferers and the world that the patients physiologically stopped themselves from doing activity and CBT and graded exercise was the answer to this life long disability. In most cases (but not all) CFS sufferers are proactive, fit people who are knocked down by a virus and then cannot recover, like in my case. Sleep, rest, graded exercise, CBT, all do not cure my overall condition. They help but have not cured or will cure me as I and my family go into the 6th year with this condition. In the background something is still biologically wrong. Don’t get me wrong there are psychological issues, but they come after you get this condition. Aniexty, depression, self doubt, paranoia, are all common as people question why you can’t recover, you do the same. Start slowly and work your way slowly back up as the treatment goes. If you have done that a 100 different ways, with the same result trust me you are going to feel pretty shit about yourself. And then your doctor or nurse questions you about why you are not getting better and gives you articles about thinking positive, realigning your thought process. We have done all of that at the start, retried it many different ways and still fallen over. Most CFS sufferers are intelligent and have already read the book and self diagnosed by the time they get diagnosed by the NHS. I do not understand all of the ins and outs of CFS, I do not want to as it is too complex for my small tired brain. But the main point is, the U.K. has for too long said it is a mental problem and relied on this flawed study, which from the start was questioned and challenged. It makes me mad personally because it does not impact on just me, it impacts on your entire life, family, friends, children, work, career, ambitions, fitness. Hopefully the more this gains traction the more the appropriate authorities will listen and work on the real reason why people are still suffering from this life changing disability. To the medical staff / doctors / researchers that have always known this, thank you for your persistence and hopefully we can get to a more positive place soon working together as one.


Updates galore – life with CFS a glorious fight 😀

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. 

Chronic Fatigue Life

Bloody hope not, it takes ages to get anywhere these days and it’s full of idiots trying to get there quicker! So a little about mee, I have the pleasant and lovely chronic fatigue and he has been my partner for 5 strong years. I say he as only a condition this ignorant, bull headed, persistent, and dumbfounding could be male. That’s not disrespecting females, definitely a compliment I would say.Right here is my mushy advice, take it or leave it but it works for me.
Along the way I have removed some of life’s little worries, my mind is a lot clearer without the stress of worrying about what lies ahead. Look after yourself and your loved ones. In my experience it does not take money to do that, affection, hugs, listening, empathy, understanding, being reasonable, and it all being two way are more important than anything. 

As a person I hate that differences cause fear and hate, as someone that lives with a disability I find it hard to explain myself. Then I ask why do I have to explain myself, it’s me and this is who I am. Life is strange like that, as you get older the less people listen and the more they assume. It’s rare to find the good ones that listen and when you do they are like gold dust. For this reason I try and listen and be there, even when it is a complete stranger. Although sometimes I admit I struggle as my head does not always do what the heart wants, especially with him about. 

For some reason people have forgotten to listen or are too busy to think they need to. Forgetting that the reason humans came together is through communicating through our body language, actions, smells, sounds before speech was a fashion thing is weird when you think about it. Here we all are communicating the shit out of our phones but not listening to the person right next to us, maybe that’s the love of your life, family, a friend but isn’t that strange.

Having your body knock 7 bells out of you, your confidence, ability to live is pretty sh*t. But on the upside it is much better to be alive and living than hiding away, or the worst thing not living at all. On the counter argument I get it when you do hide as sometimes you feel like you have no option. So peace out to you hiders out there, I’m with you and I hope you pop out soon as it’s not too bad and you do have friends and support on the other side.

My hiding took to some extreme levels recently, I took to hiding in my bedroom in my bed. Well, I couldn’t really move but I call it hiding as my body was hiding from the world. Funny when your brain says your fine, but your body thinks otherwise. I call it sober drunkiness, it ain’t pretty, it ain’t great and you can’t blame it on being alcohol what a waste. So he won again but the force is strong in this one and I do not go down, well without a slight fight. Admittedly my fight has somewhat weakened over the years as he put in a good longterm strategy and game plan. Mine was short term, damn it!

So here we are living life on the edge of energy, no energy. It can be quite fun, never knowing when I might not have my legs with me, or my head. Strange when they are physically there and can work with no issues. You get through it, and it gives me a sense of respect for my body and brain that I never had before. Life is a miracle, even when it is messed up and I’m thankful for mine.