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 😀