Too tired, again

I was getting ready for my yoga class this morning, when I realized: I can’t do it. I’m just too tired.

Everyone gets tired, but chronic fatigue (CFS/ME) is different. Because normal people rest and then they’re not tired any more. People with CFS can rest and they still feel tired. Before I got CFS I simply didn’t understand this. I know you won’t either.

Imagine if you were too scared to do exercise, because you knew that every bit of energy you used up exercising would simply be gone. It wouldn’t come back for a long time – days, weeks, months. Perhaps it might never come back. That’s how chronic fatigue feels.

I wish there was a cure, but there doesn’t seem to be one. Instead I live my life constantly aware of how much energy I have and whether it’s enough to get me through the day. Most days it is. Today it wasn’t.

I didn’t want to tell you about this. I don’t want to become a chronic fatigue blogger. I have so many other things I want to say. But today, it just isn’t happening.

36 responses to “Too tired, again

  1. Steve, have you considered how your diet might have an effect on M.E? Some years ago my wife suffered from this illness but NO-ONE seemed able to help until she attended a Clinical Nutrionist. Supplements & diet were key to her getting over a very dark time for her (in fact she lost her job because of it). Can’t say that she was 100% cured but for the last 10 years or so she has been so much better. (She stopped supplements after a period of time; they were used to re-balance things).

  2. Hi Ash, thanks for your comments.

    I recently reviewed a book that recommended dietary changes:
    and I tested it on myself:
    with some success. For years I have followed a strict, healthy diet, done regular exercise and taken a large number of supplements too.

    Mostly I get on with life without too many problems. I have adapted to my circumstances and haven’t had any severe symptoms for several years now. That’s mostly because I manage my energy levels by avoiding work/exercise if I don’t feel I have the energy reserves.

    Glad to hear that your wife is much better. I think there are a lot of things that CFS sufferers can do, but we mostly have to work it out for ourselves.

  3. So sorry for your suffering. I hope you find energy soon. I can’t imagine living that way, but your attitude and acceptance are admirable. Sending thoughts for renewed strength your way.

    best regards,

  4. Thank you for your kind thoughts, Elizabeth!

  5. I understand, I live with a chronic issue as well, epilepsy. It is very difficult to explain to someone who thinks I “look normal” or doesn’t understand how my life can simply stop a few days at a time as a result of the epilepsy. I hope you get the rest your body needs.

  6. I’m not an expert in fatigue but there might be a recipe that will get under your tired skin even if you don’t like it.
    Step 1: Sleep. A few days, that is! (If you can’t sleep don’t go to bed!) Don’t try to fall asleep unless you are crazy tired. That is the only way you will actually get some rest. So do whatever it takes to get that last drop of energy out and then sleep.
    Step 2: Take at least 5 days of eating only fruit and vegetables! Raw! (No, I am not 100% raw.). When you will see what this will do to your body and mood, you will thank me. (Obviously, more water than you can take is a must.)
    Step 3: Play some board games! (I know, unexpected!) They will make you laugh even if the idea of laughing makes you angry right now.

    • Thank you for the advice, and yes, I will try to get as much sleep as possible. I do regularly have to sleep in the afternoons. Only fruit and veg? Maybe I will give that a try. I do eat a lot of fruit and veg, but only? Will think about that. Board games – we are on the same page, as that is what I spent the afternoon doing – playing Cluedo with the family. Feeling much better as a result!

      • Great! About the fruit and vegetables: you need to understand that we underestimate the effect of food, both good and bad. Taking a few days and eating only fruit in vegetables in raw form with clean your body and improve your mood. Just give it a try. It’s a good idea to keep some notes about your evolution during those days. It will give you a good reason to try it more often. So, in time, instead of beating yourself up and feeling bad you will go for what is an obvious actual solution: get some energy in your body by eating the right stuff.”Mens sana in corpore sano”. 🙂

  7. Gosh, Steve … I’m truly sorry about. Unlike the other people I can’t offer any recipes or suggestions. There are things in life we just can’t overcome or change, and the best we can do is come to grips. Perhaps that’s unduly American, I suspect the water-drinking, board playing, dewrinkling crowd is English. However, I think your remark about ‘just getting on with things’ is sadly correct. Medical research is, as you know, beavering away on this … so, who knows? One of our fellow bloggers Howling Fantog has Tourettes, by the way. I think it’s strong of you to share your feelings … and you get a gold medal (it’s all of this Olympic imagery) for that.

    • Thanks for that, Mark. This was an uncharacteristically self-pitying post and I am already sorry for inflicting my problems on the world. Normal service will resume!

      • No need to be sorry … it’s good for people to know, though it’s not our job to cure you or remind you of it. But knowing it? Well … that’s good, Steve, It makes me respect you.

      • Some days you just NEED a self-pitying post and then you can look back and say, “that was one of the bad days but thankfully, I do have good days” I found your blog on one of my bad days and somehow it helps to know that others struggle and still survive. Have you (or anyone else) heard of using EECP? My cardiologist is suggesting this but insurance does not cover it. If
        I really thought it would work I would use my savings but………

        • Yes, some days are good, some bad. I haven’t heard of EECP. What I have learned since blogging about chronic fatigue is that there are a lot of ideas around. Some of them work for some people and not others. There isn’t a silver bullet.

          I would recommend starting a food diary to see whether any common food groups have a positive or negative impact. Chocolate and green vegetables seem to help me, but other people may find different factors.

        • I have eliminated all fast food, soft drinks and products with corn syrup and MSG. I love fruits and vegetables and chocolate, so no problem there. A friend is encouraging me to give up gluten products but I love my breads etc. so not in a hurry to try this route. It does seem when I have a relapse it takes less energy to munch on crackers & cheese or something equally easy than cut & chop and make something from scratch.

  8. Hi Steve, I don’t claim to understand the medical aspect of this, but have you talked to a knowledgeable yoga master? Not the bloke in the gym who did the 3 week teacher training in Thailand, but someone really experienced? There may not be a cure as such, but good ways of managing it. Xx best Sarah

    • I have discussed it with my yoga teacher, but she didn’t have a recommendation. I do find yoga helpful, at least in its gentle forms, but today sitting down and doing nothing felt like the right thing to do.

  9. Hey Steve, I also don’t understand exactly what you’re going through, but I have a suggestion that may be pretty obvious with your extensive background in Physics:Time travel. If you travel into the future, you could find out if there will ever be a cure. If there won’t be, you could travel into the past, way back to a time before anybody had CFS/ME. Hopefully that would make it go away.

  10. I know the feeling. Bro hugs.

  11. You can have a self pitying post every once in a while. I’ve been in a funk for a while and haven’t been posting at all. CFS is caused by one of the herpes viruses, no? Isn’t there a viral suppression medication yet for that? That may sound incredibly ignorant of me.

    • I believe it’s a virus, since it started with a viral infection, but doctors don’t agree. Some think it’s a mental illness. Then again, some doctors smoke, so I have a generally low opinion of “doctors”. I probably should speak to my doctor again.

      Why don’t you blog about the time you fell down the snow sinkhole and nearly died? That would make a good post!

  12. I am unsure if it is appropriate to ‘like’ this post. Take care.

  13. This doesn’t read like self-pity to me. It reads like someone who lives with a chronic illness and there are some days that are harder than others. So thank you for not pretending things are great today if they’re not. By writing this you give people like me permission to be human as well.

  14. Pingback: Too tired, again | terigblog

  15. So, so sorry if this comes across as patronising, but your blog made me cry. Life plays some cruel tricks sometimes. But I think you should be proud that the spark was still in your writing; the fatigue didn’t extinguish that.

  16. You are teaching us all how to cope with CFS with class and dignity, Steve. I once tried to explain to my husband what childbirth felt like, he could only nod and give a puzzled stare. I understand folks wanting to offer advice even though they have not experienced the illness. Having said that, people we already know, we have done the diets, gone to the dieticians, the specialists, the osteopaths, the naturopaths and more. We have heard it all trust me.

  17. I don’t know much about CFS. Do you ever have the rare day when you feel energized and refreshed?

    • I am a mild sufferer. Most of my days are fine, but if I am not careful I can flip into a state of exhaustion that can last weeks or months. I have learned not to fight it, but to roll with the punches. When I start to feel tired I stop whatever I am doing and lie down. It’s tedious, but it seems to work.

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