The effects of exhaustion and tiredness from M.E
In my series of posts about living with M.E, I wanted to touch ground on exhaustion and tiredness. So far I have covered the general basics of living with M.E, anxiety and depression and also temporary paralysis, but it’s now time for me to talk about one of the main symptoms of M.E and how it effects those living with it. I did want to say first off though that I’m really encouraged and overwhelmed by the amount of support you are all giving me and I’m so glad that I’m able to help some of you going through the same thing at the moment. I’m working closely with a couple of M.E charities too to help spread awareness for it and you can read an interview I did on M.E support by clicking here. It’s been lovely knowing so many of you are so supportive and at the same time you aren’t treating me any differently, which is what I had hoped for. I’m still me and even though I’ve decided to make having M.E public, it doesn’t change how you know me and I’m thankful for that.
One of the things that every single one of us who has M.E will say is a huge problem is exhaustion. It’s one of the symptoms that everyone gets and it’s not just your average tiredness where you need to rest for a while to feel better or get a good nights sleep, it’s much more than that. Someone described it once as it feeling like running a marathon with flu or I think of it more like having your plug completely pulled out and you are so drained of energy you just can’t do anything. This type of exhaustion happens everyday and it’s mentally exhausting from being physically exhausted. There are days where I can’t get out of bed and I really struggle to even walk, go up stairs or do anything but sit down and then there are days where I feel ok to do normal activities, but it will creep up on me the following day.
I read Sally’s blog a few months ago when I first announced that I had M.E and I was deeply moved by how they explained the tiredness. She likened M.E to money and a savings account. Sometimes a sufferer with M.E will save up all their money (money meaning energy) for a few weeks by not doing barely anything just to have one day of normality where they want to blow that money on a shopping trip or something really exciting.
Since having M.E is often a hidden illness because it’s an internal swelling issue with the brain, not having a physical problem to show someone makes them think differently of you sometimes. So them seeing you acting normal on a day out when you’re supposed to be ill can make them think you have nothing wrong, but what they don’t see is how much you sacrificed saving up that energy and how much you are suffering for it after having used it all. If you have decided to go out for a little walk to change the scenery up from your house or perhaps you might want to go and sit in a cafe, someone you knew could see you doing this and just assume there’s nothing wrong with you, so trying to explain the problems with M.E and exhaustion can be really hard. I don’t want any of you to stop trying to live your life for this reason because you are sick of trying to explain to people how it works. I was afraid to do so many things in the past because of what would end up being said to me from people who just didn’t understand, so if you can, just try to ignore them as you only need supportive people in your life.
As I said above, I can only explain the exhaustion in a way that’s like being imprisoned in your own body and your energy plug being pulled out. The tiredness is like nothing I had ever felt before and coming from a very active and sporting background, the tiredness from hours of sports doesn’t even come close. Of course working out for hours or running marathons will make you tired and ache all over, but that kind of tiredness is only a fraction to the level you feel with M.E. and I know first hand as I have experienced both over and over again.
You might not have done anything at all and the next day you feel like you have been run over by a truck and you can’t barely move. You struggle to move your legs and arms to get out of bed, you can barely keep your eyes open because even that takes up too much of your energy, so you end up lying in bed for hours hoping that you can muster the strength to get out. This is something that so many people don’t see. Since it’s a day to day illness and the symptoms are dependent on so many things, we can look fine some days and act completely normal, but then other days, feeling fine feels like it never existed. It’s definitely a hard one to come to terms with and understand why it’s happening because sometimes you can feel so exhausted for absolutely nothing and you can’t figure it out.
After having gone through this for over a decade myself, I will say that you really have to be careful how much you do. I did mention before about pacing yourself, knowing your bodies limits and how to keep it ticking over at a constant level rather than an up and down one, but that’s hard and I know that. One day you feel like you can do a lot and you don’t suffer from it that day, but come the next day, you are paying for it and you never realised it would happen.
As I got M.E when I was only 13, I’ve had 14 years to come to terms with it, learn how to deal with it and work around it, know what I can and can’t do and try to keep things at bay, but it’s hard. Don’t beat yourself up if you haven’t figured it out yet and it’s getting you down because it takes years to learn how your body is acting and coping and still today, I sometimes don’t understand what’s going on, but each step is a learning curve and another step on your journey to learning to live with it and carry on.
Sometimes there are days where I need to do something big like travel up to London for an event or something similar and I will save up my energy for that and suffer for it the days after, but for me it’s about determining what’s worth it and what isn’t. I’m lucky enough and strong minded enough to have been able to build my job around my lifestyle and become self employed by doing blogging because for years I couldn’t work or do anything but sit at home and it was very, very difficult, both physically and mentally, so I’m happy to report to you that if you are strong enough to accept it and not fight it anymore, you can work around it and create a life you want in your own way. If I did, you can.
For those of you who are looking after someone with M.E though, please make sure they listen to you on days where they feel fine. It’s so common for M.E sufferers to feel great some days and then they feel like they can do anything they want to because they have missed out on so much, only to find out the next few days they are paying for what they did, even though that would have been completely normal, human activities to do. I know about this as when I was going through my teenage years, it’s something I struggled with. On a good day I just assumed I was getting better and I wasn’t sick anymore, so I wanted to try and live my life normally and unfortunately that idea was over before it started.
Please make sure you tell them to rest up and pace themselves, even if they claim they feel fine. Exerting yourself too much ruins the healing process of M.E because it keeps you on that level of extreme up and down energy levels all the time rather than trying to keep that level balanced out on a constant line. Truly pacing myself this way and limiting my activities to what I know I can and can’t do is how I’ve helped myself have plenty more good days than bad days and how I’ve managed to get a lot better.
It’s good to set a routine that you know you are fine with each day and stick to it, no more and no less until you are comfortable, then you can experiment with adding a couple of little things extra to your routine and seeing how you go with that. If you are doing ok with it, that’s great. Stick at it for a while and slowly increase again and again. Your body will tell you what you can and can’t do and it is a learning process, so don’t beat yourself up or be upset if you struggle some days as you can’t add more to your routine. It happens slowly, over the course of years, so take your time. I did say there are days where I have to reserve my energy and use it for important things, but you really do have to decide what’s important enough to do that, like holidays, family occasions etc. and go from there.
I really hope this post can help some of you suffering from the exhaustion and tiredness that M.E causes and I hope it might put a little light on the issue for those of you who know someone with M.E. Please don’t be judgmental to them if they look fine when you see them, it doesn’t last unfortunately and that’s one of the rarer days where they are feeling ok. Most of the time it’s extremely draining and upsetting, but over time it will get better and I do personally have proof of that since I’m getting a lot better. M.E really is a secret illness and a lot of people don’t know you are suffering with it because you can hide it so well, but for every smile and happy expression, we never truly know what the real expression is inside that person. If you have any questions as usual, please do let me know below or send me a email if you prefer to keep it private.
Also, please check out the Hidden faces of M.E. campaign, where you can watch me and some other people talking about what it feels like to have M.E. The film is only two minutes long, and it would be fantastic if you could share it to help raise awareness of M.E. Lorna xx.[showads728x90]