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.
https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html
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.
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Tell me why when the sun does come out does my body reject being in it. Somehow my body has got out of sync with night and day without doing anything. I suppose it is just one of those things that you get used to. But I suck at that, my brain is always telling me that I am fine and that I can do anything. Then reality hits but my brain will not listen. It is a strange feeling trying to prove your brain wrong, telling myself I can’t do something is the opposite to how I have lived my life. In other words it feels massively wrong and I hate it and me for being ill. Today’s plan is to get outside in the sun and try to get some rays in my life. Not to be overrun by thoughts of exercise or work and all that stress. To live here with my little moments with the precious things that make my small world wonderful, my wife and my little baby girl. Just need to get out of bed 😀
Staying Active – Mentally
It has been a hard last week with doctors and being ill at the same time. On the lighter side of life the weather has been better which helps. So I have been trying to find ways of getting through the day, filling my time. It is not easy as I find it hard to concentrate and I am uncomfortable and tired. YouTube, the news, films, online surveys and competitions have all played there part. Not that I win anything, but better to be in it than not is my reasoning. I also have a couple of apps that send me tasks in the local area. Some are for at home and make my day even for a short while exciting and interesting. The best one is clic and walk as it is short and easy to follow. I am pondering recording vlogs for YouTube but I think better of it as my consistenticy is lacking with the ups and downs at the moment. But alas the day is new, today’s target is to get out of the house for a small walk and see the sun.
Here is a picture of my little girl joining me on the sofa for some cuddles and making my day 😀
Sensory Overload
Today I thought I would watch the finish of the Tour De Yorkshire in Scarborough, UK. But my body has had other ideas whilst walking down to the finish, luckily my family has rented an apartment nearby for the bank holiday weekend so I have come back to sit and rest. It is really amazing how I can be happy and have energy and then walk into one busy place and be overloaded. I have spent my life enjoying new things, going places and meeting people. To have a condition which seems to hate all of these really gets to me on days like this. I know it’s not the condition but sometimes it really does feel personal and that I should live in a box away from everyone. At least I recognised my body kicking into fight mode and was able to walk back without the legs giving way. It’s been a hard this last week as I have struggled with most days doing anything. That’s what really gets to me, if you look at inputs vs outputs it is really an unfair equation with CFS. On the bright side I am going to rest up, and hopefully be able to get outside to watch the finish from a distance. Although my body might not like it my mind does like watching and enjoying a good old race with lots of people about. There is nothing to do but pull back in situations like this, someone said to me it is avoidance. Which I think is wrong as you have little choice in the matter and either way is a loosing path, catch 22. The main focus for me is to recognise the cause, pull back from it, have a break and then hopefully retry. It’s not guaranteed to work as sometimes it is impossible to get your energy back as I don’t run with much at the moment. I would like to see how others struggle with these days, and especially food. I am healthy with my food but naturally on these types of days I retreat to fatty and salty based foods. So anyway hopefully I can turn the day around and get back outside. Good thing I have YouTube and TV to keep me occupied, not like I haven’t watched any of that over the last 5 months! 😀
Misunderstanding CFS is not wrong – just learn from it
This is a simple one for me and I am sure it resonates with a few of you out there. Even some of my closest family and friends still cannot understand that I am ill with chronic fatigue and chronic pain. I get it, I do not have a broken arm, I look if you do not know me healthy from the outside. When I do go outside and leave the house it takes almost everything to do that, so I try and maintain a calm and presentable appearance. That is not for other people that is me just trying to be me. So I know having a mild form of CFS that many of you will face the same if not worse issues / judgments. There is no miracle pill for CFS and many other similar types of illness, and there is no easy explanation. I find the pain hard to explain along with the fatigue but I try it along these lines:
Imagine your life as a piece of string. Everyone has there own piece and each piece varies in length and thickness. The average “normal” person can operate doing daily stuff such as getting up, working, exercising, family, socialising, go to bed wake up and do the same again. Every so often they get tired / ill and have a lie in / medication and after a little while are back to “normal”. I was exactly like this and perfectly happy but somewhere along the line I got a viral infection (swine flu). The string got narrower and shorter without anybody noticing but I continued to think I was still physically and mentally the same so kept to my normal routines as did everyone else with their expectations of me. Nothing wrong with that but I kept pushing to get back to “normal” as I was struggling everyday to do that therefore straining the shortened piece of string further. To make it more confusing someday’s my piece of string can feel like normal, and the next go back to being short and weak. And so the cycle of bouncing begins, it probably started before this but my body and brain was able to cope. Trying to repair the string is complicated, time consuming, and in terms of medical care is not understood fully yet. But there are more and more people working on it, and my hope is through promotion and collaboration these types of illnesses can be treated more successfully soon.
I am tired from writing that, it is still not easy and a little convoluted but that is better than what the doctors tell me I think. It does not go into the pain and fatigue side of things as that is even more convoluted but if I get through the above then I am doing well. At the end of the day there is always a small minority of people who like to believe their own opinion without listening or reading the facts. That group even if they are close family or friends I do not go over it with them time after time. I find that arguing or trying to educate them wastes precious time and energy which is not easy to come by. In the end I hope that they will come around and see that I am not making it up. The fact of the matter is I live with this condition, I try to make the best of it and that is all I can do. Enough with the rant, the most important thing is that you find your way of explaining it without tiring yourself out. For the most part I think CFS sufferers are very private and try to avoid people seeing the pain and fatigue that they are going through. You deserve to feel good about yourself and I would love to be able to take some of the pain and fatigue away.
If any of you are family, friends, colleagues of a person suffering from chronic fatigue, chronic pain or similar type of illness please take note. Most of the time they are not telling you what is going on because it is usually always going on. If it is not pain or fatigue it is the worry that you might catch a bug or your body might pull you right back to the start without any warning. Saying do not worry / I am sure you will get back to normal soon / or you might not get ill / are the least reassuring things to hear. Relaxing and chilling are hard to do when faced with this foe so be mindful when you say such things. It erodes the politeness you might be used to in a person, it does change a person when it erodes all your energy and you can get pain without doing anything of course it does. That does not mean that their personality has gone, we have bad and good days but the bad are just that. Laughter is still a great medicine for me, seeing people even if it is in my house is brilliant as it connects me with the outside world. It can be a lonely place but we do not want to be alone and we do not want to talk about being ill all the time I promise. So for all those helping others with this condition I tip my imaginary hat to you, you are stars. For those that stay away because you do not understand or do not like seeing someone in pain then just imagine being in their shoes. Everyone shy’s away at some point, even me, it does not make you less of a person as long as you recognise that and make a positive change to correct it. So misunderstanding is fine, learn from it, adapt, look into it and try again. We are all in this life together and if we put our minds together we could make this a much better place.
Mee on a mini adventure meeting my local duck friends 🙂 #postpositivepics @cfsandmee
When You Need A Perk Up
Most mornings I must admit even without CFS I found it hard to get up, a lazy duvet hugging man I am😊. Now they seem 10 times worse, but I find that it is best not to think about it. So I start with finding the positive, which at number 1 is I am alive. Next comes the family and friends around me and so on. I find this helps take the focus away from my brain and body of the pains and complaints being offered. Not completely away but gives me something else to focus on and distracts the mind. Now I know that different people suffer from varying levels of disability / pain / uncomfort but this helps me to start the day in a more positive frame of mind so bear with me. I find it easier if I can get out of bed, but I take this slowly as I never know which way I will end up walking or if my body agrees. And if I need a pick me up or a bit of redirection I find a positive picture or memory that I have stored on my phone to make me smile or laugh. I have included a picture of my baby girl who makes me smile but this picture takes it to a different level. Try and find your positives, record them and any pictures or videos so that you can access them when needed. I try and make sure people see the world in a positive light so if you can on Twitter or Instagram use #postpositivepics to me @cfsandmee and let’s show the world there is more to us than an illness. And if course a big shout out to my little lady hopefully spreading some smiles to you. This was her face when I said smile 😀
Intro – Lets Get This Started
I imagine most people have a great plan and direction when starting these things, I however do not but here we go, I am Chris and this is my blog about CFS and me. I am doing this because I have been watching the internet and reading from it over the last 5 months as I have been mostly at home. Not through choice unfortunately but through a condition called chronic fatigue syndrome (CFS). It is not easy as I am not the best person at staying in one place or inside but my body and brain did not give me much of a choice. However it has led to this moment where I decided to write and hopefully vlog about my experiences. I want to give some positive insights into my world to show you that just because someone suffers from this condition and ones like it that there is something more to a person than just being ill.
My life mainly consists around my young family who are a huge support factor to me and have been throughout. I have had this condition for five years now and it recently got a lot worse. To give some perspective of how it started I was busy working, socialising, exercising when a freak accident hurt my knee 5 years ago. Now I had a couple of virus’s over the proceeding two years and had not thought much about them, at the time they knocked me off my feet for a week or so but nothing more than flu. I struggled with this knee injury for 6 weeks, nothing major no muscles torn or bones broken. I just remember being so tired on the inside and the pain being so bad. Some days I did not know where I was going and I struggled to remember who I was, what I was doing even though I had not done anything. I returned to work but struggled with any kind of stress either physical or mental and the battle with the pain and tiredness continued for a year. Doctors came and went with nothing being diagnosed or suggested until I had an MRI on my knee. At this point I was so frustrated at the pain coming and going that when I did not feel any immediately before the MRI I began jumping as hard as could up and down onto my knee just so something showed up. When of course it came back negative but I was so angry at the craziness of the whole situation. From super fit guy to limping in pain, reduced working hours, mental mess all within a year with nothing medical apparently wrong with me or my body. After being told that I was dragging my heals at work with the injury I wrote it all down. eventually I went back to the doctors and sat down and went through it all, making them listen to what I was experiencing. Several bloods tests later after telling me I was depressed they suggested CFS. It took some time but eventually I was diagnosed, if you can call it that with the condition. I then yo yoed for around two to three years, managing to work, study and take exams successfully, exercise and even get married. But the tiredness inside never went away no matter what I did and various pain cycles around my body appearing at will with no warning. Over the last year it all caught up with me, not one for admitting to being in pain or being ill my body gave me no options or get out clauses this time.
So this time around after ending up in hospital and again nothing showing up even though it took my speech, ability to walk away for a small amount of time I started over again. I am sure there are many people who are worse off than me and in no way do I want to sound like I am preaching. I am not sure if it is jus a man thing either I just found it hard to share and to explain to others what was going on and how it was affecting me. Even to this day people look at me and still think I am super fit and active, which of course is a blessing but when you feel like your body is fighting a battle minute by minute every day for the last few years it is a hard place to be. Thankfully I have a supportive employer and family and friends, and plus I like a fight be it mental and physical. Now I know some people will say you should not fight it, but that is just my way of saying I am not letting the condition define me, or mee. I am sure most people with this condition know what it is like, some days I can walk for half a mile and others I can hardly walk. Is there a pill, surely the doctors can do something, it’s all in your head then? All regular questions from friends, strangers, family and work colleagues. I still struggle with explaining it and I try not to if I can as it saves my energy and my head from being in a mess. I do believe that there is a positive to everything, it may be hard to see, find, and it may take some time but there is one. Life for me is still a miracle and this condition showed me how important it is to respect and look after yourself and the ones around you. I took my body and brain for granted thinking that you can always push harder and get better without giving myself a break. Now I have learnt to rest, relax (a little anyway), and accept things as they are and fight when I need to not just because I want to. Not that my life is all yoga, candles and relaxing music, one step at a time. I just wanted to start this by introducing myself and where I am coming from. Hopefully I can help other people through tough days with or without this condition and show that there is somebody that understands.
cfsandmee 