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

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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.