A Fashion Blogger With M.E – Exhaustion & Tiredness

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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.

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42 Comments

  1. September 11, 2015 / 12:45 pm

    Lorna, I had no idea you suffer from M.E. I can only imagine how difficult and upsetting it might be to stay at home and not be able to do anything… So good that you’ve managed to become self-employed and build your life around blogging… It requires so much efforts to create your dream life and you did it in spite of anything. You are such a strong person! Keep it up! xxx

    Smoky eye step by step // http://www.keenonbeauty.com

    • September 11, 2015 / 2:34 pm

      Thank you so much! Not many people did know, only those close to me, until June when I made it public. I’m really glad I did though because hopefully I can help others with the illness. Thank you for your lovely kind words though, it means a lot to me.

    • September 11, 2015 / 2:34 pm

      Thank you so much Kathrine!

  2. September 11, 2015 / 2:12 pm

    I’m really, really happy you have been sharing these stories. I had never heard of M.E. before, as I assume I am not alone, and it’s really helpful to have a good idea of a day in the life of those afflicted. At the very least, my empathy has grown stronger.

    http://aroseisinbloom.blogspot.com/

    • September 11, 2015 / 2:35 pm

      Thank you so much, I’m really glad that it’s helpful to you and that it’s giving you advice and insight into the illness, thank you for reading them.

  3. September 11, 2015 / 2:28 pm

    Hello, dear Lorna, this is a deep, intense post that explains things in such a good way… I knew one person with M.E. and I could see how it was. I admire you for your will power and the way you turned things, like adjusting and looking for the way you want to live and you did it! Surely there are “days”, tiring days, but you don’t sit thinking negative things, but on the contrary, you save energy and do what you want – if this is the way it is, so be it. I am saying it this way, because to a lesser extent I have accepted the way I am as well, talking about tiredness. I am a fussy eater and I seldom have proteins and vitamins. I have anemia since I was 9 and OF COURSE I am not comparing that to your tiredness, but I feel tired most of the time, not exhausted, but I feel sleepy. So people make fun of me, saying I sleep too much, but they don’t know the way I feel. At first I tried to explain, and they made fun or didn’t believe me, and now, I don’t care much anymore. So I liked your explanation about money saving for just one day (energy, I mean). And then people see you and they think you are extremely fine and all. Let it be, they are too narrow to understand. I don’t think people would treat you differently – you are an intelligent young lady with an open mind and heart, and it happens that you have M.E., like it could be any other illness. You see the difference, you have M.E. and tries to show it “I am stronger”, not the contrary – M.E. doesn’t have you, you see? Hope you have a nice weekend, and congratulations for being so strong!
    DenisesPlanet.com

    • September 11, 2015 / 2:40 pm

      Hi Denise,
      Thank you so much for writing such a heartfelt comment. You don’t have to justify it that your tiredness and problems aren’t as great as mine as that’s not how I see it, everyone copes different and everyone has different issues to deal with, there’s no competition at all. I’m sorry you are going through tiredness with anemia. I know people close to me who suffer from that too and I understand how bad it can be. Are you taking iron supplements and other vitamins to help your body replenish what it’s not getting? I know they do help a huge amount in making you feel better.

      It’s important for us to get all the nutrients we can, I actually take a few myself and force myself to eat certain vegetables which I blend down into a drink. I put spinach, kale and carrots with water into a nutri-bullet blender every morning and drink it. That helps with my iron levels and to regulate the stomach acid I have. Have you tried something like that? I’m fussy with food too but if I just drink that with a straw it’s gone in a minute and it’s benefiting me greatly.

      I really appreciate your kind words though, I definitely haven’t let M.E own me. I did for some time when I was younger, but not anymore. I do own it now and I am the one in control so I never let myself feel down about it. It’s really nice of you to notice that and I’m glad you also don’t worry anymore about how those other people see you when you are tired. As long as you are happy and healthy, that’s what counts. But definitely look into the vegetable juicing and supplements if you haven’t already, it’s definitely helpful.

  4. Steven W
    September 11, 2015 / 10:47 pm

    I’ve just finished reading your M.E. support interview as well as your article here. Both pieces, and especially the interview, are very moving. Once again I’m struck by your strength of character and your inspirational outlook on life.

    I’m so pleased that you’ve received such a positive reaction to this series of articles, in particular, and to your decision to go public about your M.E. I think your comment that you’re still you hits the nail squarely on the head – and moreover it’s not just that you’re *still you* but that you *are you*. I hope I’m not being too cryptic? πŸ™‚

    I would like to ask a question, Lorna. I’m just wondering, once you’d made the decision to go public, how much doubt did you have about your choice before the feedback here (and elsewhere) started to appear?

    I ask because I know it’s so easy for me to sit here and say, completely honestly, how much I respect and admire your decision – and somewhere within my respect and admiration for you there lies an understanding that your act of letting us on this was surely the tougher half of the equation than us thinking of our responses (which were largely instinctive, I think). For me it was a no-brainer.

    I’ll wrap up my comments by referring to what you said at the end of your interview about your boyfriend being a really talented photographer. I wholeheartedly agree with that thought. Terrific work! πŸ™‚

    • September 12, 2015 / 9:23 pm

      Thank you so much Steven, that’s so kind of you to leave such a heartfelt comment about it. To answer your question, it was something I was contemplating for 2 years if that says anything. I was going back and forth in my mind for ages, and I would say the last 3 months or so I thought it was something that I really should just do and put it out there. I did have a lot of reservations as I wasn’t sure which way it would go and then over time, I realised it would be ok to speak about it because of how caring my readers are and how nice they are, I thought it would be received well and I was right. So the doubt was there for ages and it was there when I was typing and pressing publish, but when I started to read the responses from everyone and know that I was helping others too, the doubt was gone and I don’t regret it. It’s kind of freeing in a way to be able to speak to openly about it and not hide behind it anymore. For instant now, I’ve just had to be carried up the stairs by Adam because I can’t walk and I still can’t feel my legs at the moment, but I don’t have to hide how I’m feeling anymore πŸ™‚ Thank you truly, from the bottom of my heart, for your comments every time I make a post and how much support you give me πŸ™‚

      • Steven W
        September 13, 2015 / 10:49 am

        Oh, it’s truly my pleasure to come here and read your articles and offer my comments. I absolutely love what you do here and I think you’re a terrific ambassador for your industry, your passions and your beliefs. So you’re very welcome indeed. πŸ™‚

        Thank you for giving such a full answer to my question. It’s very interesting that the idea of doing it had been in your mind for so long. Two years is a timescale which predates me reading your blog by a very long time – so that really does put the scale of the decision making process into perspective for me. I’m sat here trying to think if there’s any decision I’ve taken in my life that’s been taken over anything like such a long period of time – and I’m drawing a blank.

        • September 13, 2015 / 10:13 pm

          Thank you so much πŸ™‚ You don’t know how much it means to me to get such a nice response from everything. As my blogs about 5 and a half years old, I guess it feels like a little while in comparison, but as you only found it not all that long ago, I definitely see where you are coming from too!

          • Jerome
            September 16, 2015 / 12:46 am

            How do you know you have me,are there any other symptoms,ca you find out from a blood test,thanx Jerome x

            • September 16, 2015 / 1:52 am

              Hi Jerome, you might want to take a look at my other blog post that I wrote initially, explaining the symptoms. There’s no blood test as it’s not a virus or a disease, it’s a swelling and injury to the brain. You can pick up glandular fever and some other viruses that are known to cause the damage, but for M.E there isn’t one. Here’s the post http://raindropsofsapphire.com/2015/06/30/a-fashion-blogger-with-m-e/

  5. September 12, 2015 / 2:14 am

    Seriously, my heart grows more and more with you each time you do one of these posts. You are so brave for writing these. I can’t imagine M.E., and I can’t compare it to anything I’ve experienced or know, but know we are all praying for you and so incredible proud of you. You are a force to be reckoned with.

    • September 12, 2015 / 9:24 pm

      Thank you so so much, that truly means a lot to me. So kind xx.

  6. ali
    September 12, 2015 / 3:37 pm

    Lorna, you are such an inspiration for all of those suffering, and for all of those caring, this post will surely help loads. I myself am suffering a fraction of what you are, I am not sure what it is, wether it be my age as im 49, or something else, but some days I am so exhausted as you say feel like you have been hit by a truck, but it fades through the day then I go mad doing everything and the next day I am worse! I dont seem to have the patience to rest or pace myself, but reading your post has made me realise that maybe this is something I really strongly need to do. Thankyou so much for sharing this xx

    • September 12, 2015 / 9:26 pm

      Thank you ali, definitely learn to pace yourself because it really will take its toll on you as the time goes on. If you have what I have then it’s something you need to learn as quickly as possible so you don’t make yourself worse, definitely rest more and listen to what your body needs. I hope it helps you!

    • September 14, 2015 / 11:37 am

      Thank you, you might want to read the article though.

    • September 14, 2015 / 11:36 am

      Thank you, you might want to read the article though.

  7. September 14, 2015 / 11:14 am

    I watched the video Lorna. M.E. sounds really horrible. I don’t know how you can cope with it. Blogging is already very stressful. It’s good that you raise awareness for this disease. Wish you all the best sweetheart!

    xx glamdevils.com / miasmode.blogspot.com

    • September 14, 2015 / 11:17 am

      Thank you so much Mira, that means a lot to me xx

    • September 14, 2015 / 11:35 am

      Thanks for reading.

  8. Rachel
    September 14, 2015 / 1:08 pm

    Thank you for writing this. We are the same age and iv been ill since I was 17. I only found out 2 and a half years ago that it was m.e. when we had exhausted every option. I manage to work 30 hours a week but I pay for every single second I work. Financially I’m not able to reduce my hours even though I wish I could be doing something else. I wonder if you ever “mourn” the normal life you could have had, that’s what upsets me a lot, not being able to socialise like other people my age.

    • September 14, 2015 / 1:19 pm

      Hi Rachel, wow that was a long time to go undiagnosed πŸ™ What happened with the doctors? Mine took about a year I’d say. I feel bad for you that you have to manage a 30 hour week actually at a job, I couldn’t handle it. I get exhausted being out of the house for just one day. Do you get to sit down a lot and take breaks? I work over 50 hours a week, but I get to do it from home so I’m really grateful for that.

      I rarely go out, I only go out for a little while on the weekends, so I don’t socialise at all in the week, or much on the weekends. I don’t really have friends that I see, but I have a very supportive boyfriend and family, so I’m lucky in that respect. I do mourn not being able to live a ‘normal’ life sometimes, it gets frustrating that I can’t just go on a day trip if I want to, plan a proper holiday, things like that as I need to have things planned properly, but I try not to think about it and dwell on it.

      I truly try to live by the mantra of being happy and excited about what I can do and making the most of it otherwise it causes me so much depression and upset which ruined my life. I’ve been there and I never want to go there again, so trying to keep positive is what works for me. It doesn’t help to dwell or get down (I know it can’t be helped sometimes) but it doesn’t fix anything or make you better πŸ™ If ever you want to chat though I am here if you need someone to socialise with online xx.

  9. Sally
    September 14, 2015 / 2:09 pm

    Great blog Lorna.
    I wonder if perhaps it was my blog you read back in May?
    “Well enough to drink coffee?”

    http://sallyjustme.blogspot.co.uk/2015/05/well-enough.html

    If so I’m really glad that the analogy helped you. I’ve often thought about how the analogy could be extended further….. to take in the notion that any recovery we experience is like getting a pay rise…. and just as you can’t make yourself earn more by spending more, so pushing to increase what we do before our bodies have healed sufficiently, will just lead worsening health – like spiraling debt in the money analogy.

    Best wishes Lorna from a fellow blogger. xx

    • September 14, 2015 / 2:12 pm

      Thank you so much Sally! It was your blog post that I read and was referencing. I’m really glad you posted a link here, I can include it in the post. That’s actually really interesting how you extended it too, it definitely makes sense xx.

      • Sally
        September 14, 2015 / 2:32 pm

        πŸ™‚

        • September 14, 2015 / 2:34 pm

          πŸ™‚ I hope you have a great week!

  10. Vic
    September 14, 2015 / 2:30 pm

    Hi Lorna, I came across your blog post through the Hidden Faces of M.E campaign. I just wanted to say what a beautifully written post on M.E you have posted here. You’ve successfully explained quite how disabling the exhaustion is. I love the way you explain ‘saving up energy’, it is a perfect description that I know rings true if you’ve had/have M.E or know someone who has.
    I suffered from M.E as a teenager in the late 90s and I wish I had the courage that you have to speak so openly about your experiences. Im in my 30s now and only beginning to share my experiences. I’m confident your beautifully eloquent and authentic voice will bring comfort to those experiencing M.E. Keep up the good work x

    • September 14, 2015 / 2:33 pm

      Hi Vic, thank you so much for taking the time to write a lovely comment. Can I ask when you were free of your M.E and how long it took you to recover? Or do you still feel like you have off days and are never completely recovered? It would be nice to speak to someone who doesn’t have it anymore and get their point of view πŸ™‚ Definitely be brave. I contemplated sharing it for years since I didn’t want it to taint people’s opinions of me, but it’s been nothing but support and overwhelming love so I am truly happy I did. Hopefully it’s the same for you as talking about it is like therapy in its own way πŸ™‚

    • September 14, 2015 / 3:42 pm

      Thank you, but you might want to read the text too.

  11. Christine
    September 14, 2015 / 5:44 pm

    Hi Lorna I really enjoyed your post and I’m so pleased you are getting M.E out there and helping more people to understand this illness. I was diagnosed with M.E in my twenties but suffered right throughout my teens. I have only recently been diagnosed with fibromyalgia after suffering from multiple pains on top of my M.E symptoms. It has been such a difficult time for me and my family, it really helps when you hear other people’s stories x

    • September 14, 2015 / 5:49 pm

      I’m so sorry you are suffering so much with it. I’m lucky enough not to have the fibromyalgia, but I do get a lot of nerve pain so my skin feels like it’s on fire sometimes and is so painful, but it passes. If you liked this post, please do take a look at my other ones and hopefully that can help you a bit more too reading more on it. Let me know if you ever want to ask any questions or anything, just to feel connected with someone else who has it x

  12. Jo
    September 14, 2015 / 7:11 pm

    Hi Lorna

    Really well written. I’m in the midst of a relapse after six months of doing well. It’s frustrating but I’m pleased I lasted six months! Great post and really well explained. πŸ™‚
    J

    • September 14, 2015 / 7:17 pm

      Hi Jo πŸ™‚ I know how you feel unfortunately as I was doing really well the beginning of this year until around May, and since June I’ve been on a relapse as well. Hopefully we get through it ok!

  13. Richard O'Brien
    September 29, 2015 / 6:47 am

    Lorna,

    You look so well, I was so inspired by your post & have posted (and quoted your blog) on ME/CFS/FM Singles Site especially for the lovely ladies on there who have lost their self esteem & don’t feel beautiful due to illness… but I hope seeing your article they will feel inspired & beautiful too!

    Hugs
    Rich T

    • September 29, 2015 / 11:16 am

      Hi Rich,
      Thank you. That’s very kind of you. I’m able to hide things very well in my photoshoots, that’s for sure. Sometimes I don’t leave the house for a week and have a lot of problems, but I never portray that in my posts as it’s not what I want people to see. Honestly though, on good days you can really look happy, healthy and great if you want to. Nobody says just because we have an illness that we automatically have to look and feel ugly, no written rules on that, so I hope people realise that it’s still possible to achieve a mental state of beautiful too xx.

Thanks for your comments =) I read & reply every one =)