Any Time, Any Place

sleepIf they gave out medals for sleeping, I’d be top of the podium (after a quick nap).

I wake up tired, I go to bed tired. I yawn constantly. And not polite little yawns either. Massive, jaw-aching, cartoon-like yawns. ‘Am I boring you?’ is a phrase I hear an awful lot.

It’s exhausting (excuse the pun) being tired all the time. It’s a bit like MS in miniature – the feeling of being disconnected from society, in a little bubble all of my own.

Days are meticulously planned, pockets of time doled out like bargaining chips. Spontaneity is a thing of the past, or at least, I have to think about it very carefully. Which kind of defeats the object.

There is a famous spoon theory, to explain chronic tiredness to other people, about how you only have a set amount of energy in one day. I prefer to think of the Mallet Theory. Say you start the day with ten mallets. You have to give one up every time you feel you’ve been coshed over the head by MS fatigue. If you’ve got any left at the end of the day, it’s been a good one.

The thing about MS fatigue, like most other MS symptoms, is that it can be managed, not cured. I have loads of strategies – a handy duvet tucked behind the sofa, rushing around like a wild woman when I suddenly find myself with some precious energy, preparing food ready for later, a command table set up next to my sofa with everything to hand. In fact, it’s very similar to when The Teenager was a screaming cute little baby. The midwife would chastise me, ‘now dear, mummy must sleep when baby does, mummy must be guided by baby, baby won’t mind if you haven’t managed to dust the house.’ Baby won’t mind if I shut the door on you, then.

I’d like to say I feel better with all this sleep. I don’t. It’s not a luxury, it’s a necessity. It barely brings me back up to my baseline energy levels, and even that’s way below par. But as with everything else that MS throws at me, I’ve adapted to it. It’s kind of normal now. Only problem is, I keep running out of mallets. …

Tagged , , , , , ,

26 thoughts on “Any Time, Any Place

  1. Tony Cardis says:

    With me it’s the ten o’ clock rule. As someone who could drink and party till the early hours now I have to plan for an evening out. But even if I sleep all day and wake up 5 minutes before I go out, at ten o’clock it’s like my body says that’s it last orders please and starts pulling the shutters down and starts packing for home.
    Thankfully at my age invites to all nights raves don’t turn up now, and at family party’s it’s expected that I leave with the grannies saying no I’ve had a lovely time.
    For me a meal out with friends and home by ten is a lovely night

    • stumbling in flats says:

      Hi Tony,
      Sounds exactly like me! I’m such a party pooper. Have got a birthday bash at the end of the month (jointly with The Teenager, he’ll be 14 next week), and I may need to sneak away for a wee shuteye, lol.
      It’s weird how all of a sudden I can just be overcome by the most appalling fatigue, out of the blue.
      And can’t remember the last time I was up all night. Sigh. Those were the days!!

  2. Ellen says:

    Mallets! I love it! The fatigue is so brutal. It absolutely crushes the life out of you. And it’s impossible to explain to anyone who hasn’t experienced it. I was visiting recently with a couple of friends. The husband has M.S. His wife was grumbling that she just didn’t get it how he seemed to have energy to do some of the things he wanted to do, but couldn’t do other things. I silently stewed with irritation, but was too tired to articulate my thoughts on the matter. Later, I thought about it. Most people do their errands and chores and work and, with what time is left over, get to do what they want. For people like us, if we do a single thing, it’s apt to leave us feeling steamrolled and incoherent. For us, there is no hope of anything left over so there’s time for what we want to do. Everything is a sacrifice and a difficult choice.

    Mallets… oh yes.

    • stumbling in flats says:

      The more I think about it, the more I am liking my Mallet Theory! Spoon is far too gentle and non-descriptive for me.
      I feel for that person with MS – been there too many times. I don’t expect people to fully understand, but fatigue is SUCH a huge part of MS. I tire myself out trying to explain it.

  3. Jenny Best says:

    I totally concur with you AGAIN! I went on a Fatigue Management Course at REVIVE MS Support here in Glasgow and it really helped me to allocate my energy. (by the by and as an aside…I’ve raised over £30,000 for them in the last couple of years. Being an opera singer helps! You can read some of my blogs at if ya fancy)
    Anyway, once again I’d like to thank you for your fantastic, spot on, blogs.
    Jenny x

  4. Tricia says:

    You have once again hit the nail on the head, no sorry mallet, that’s how I feel, I do a bit, rest a bit, do a bit more then sleep, this goes on, then at the end of the day, I hope the list of life’s have to be done has gone down a bit, to the next day, BUT what the hell if it has not at least I have managed to try. But please can everybody else PLEASE listen I AM doing my BEST!!!!!!!!

    But they DON’T .

    • stumbling in flats says:

      Thanks Tricia!
      Am really getting in to this whole mallet thing!
      People just don’t listen. Luckily my close circle of family and friends understand now, but as for anyone else, forget it. That’s why I want MS fatigue to be renamed Neurological Fatigue, or something suitably, medical-ly. Just to show how serious it actually is and not just a cop-out or an excuse.

      • Tricia says:

        Well my family DON’T understand, they think I do what I WANT, but I still manage to do what THEY want. No matter what I do, and how many times I say.
        You can see on their faces they HAVE NOT.
        It’s early days I suppose.

        I am living in hope, that one day they will understand.

        • stumbling in flats says:

          Oh, I’m sure they will! Perhaps your MS nurse could come out and talk to them? Mine offered to speak to my son, but he was ok in the end, but it was a lovely offer.
          It’s such a difficult illness to explain, far less live with.
          I really hope they start to understand you and what you are going through soon.
          In the meantime, you’ve always got us!

          • stumbling in flats says:

            Nina posted this lovely comment:

            I completely agree with what you’ve been writing on your blog; I get similar comments too, “Keep fighting, I know you can do it; you’re a strong person.” I want to ring the necks of individuals who say this, as I’m the one stuck with MS, and I have to suffer with all of its symptoms. I wish those people who blindly insist on encouraging me, could walk a day in my shoes. I know they wouldn’t be able to handle the stress that accompanies being diagnosed with a chronic illness!!!

          • stumbling in flats says:

            I’m with her on that one. Mallets, wringing necks. More mallets, lol.

  5. Tricia says:

    Mother locked up for hitting, husband and sons with ——- you gussed it a MALLET lol
    Thank you all x x

  6. Estizer says:

    I have just accepted the fact that I can only, get up in the morning and have breakfast before I have to take an emergency nap. That’s a 30 minute nap because I can’t go on. I’ve also just accepted that I must make my “to do” list shorter. Having too much on it just frustrates me when there’s so much left. With lot’s of practice, it get’s easier to realize that life goes on without all those things that I thought were so important.

    • stumbling in flats says:

      Hi there,
      I know what you mean! I still find it incredible that I can be awake for just an hour and suddenly need to lie down again and go to sleep.
      It’s frustrating and annoying, but I guess we just get on with it! I’ve promised to take my son and his friend out for a birthday treat tomorrow evening and am already worrying about having enough energy.

  7. Jlo says:

    My neuro suggested modafinil could help me feel more alert and less of a koala… Anyone tried it? What about Yerba mate?
    Any experiences out there?

    • stumbling in flats says:

      I’ve heard a lot about that drug and it’s supposed to be excellent. Had it on my ‘must ask the neuro list’! Would be great to hear if anyone else has experience of it?

  8. Ellen says:

    It’s been a godsend. I still have problems with fatigue, but this takes the edge off enough that I can walk more easily and don’t feel as if my eyes are rolling back in my head all the time. It gives me enough lucidity during the day that I can do things like read. This being the USA, my insurance was switched on us a couple of years ago. My last company paid for it with no problem; the new company abruptly refused to cover it, and lied about the research behind it, insisting it didn’t work and wasn’t “medically necessary.” (Some of these letters were actually sprinkled with shouting CAPITALS: IT IS NOT MEDICALLY NECESSARY!, as if they were typographically screaming at me.) Here, it is at least $900 or so for one month’s supply. The difference to my quality of life is so stark, that I appealed…and appealed… and appealed until I got it covered again. Going back to not having it was not an option. It doesn’t work quite as well as it did in the beginning, but it still makes a big difference. The appeal process was a nightmare.

    I’ve been using it for about 3 years now, and have come to realize that quite a few of my symptoms are related to fatigue. When the fatigue is medically treated, my mobility and vision, for example, are much better. During my appeal, I had to put together quite a bit of documentation about it. There was a study a few years ago that showed those who took it were less disabled 3 years down the line than those without (“Reduced EDSS progression in multiple sclerosis patients treated with modafinil for three years or more compared to matched untreated subjects” in the journal Multiple Sclerosis and Related Disorders.) And there was another study, “Modafinil effects in multiple sclerosis patients with fatigue” in 2009 in the Journal of Neurology(?) that was placebo-controlled, double-blind and came to the conclusion that: “Compared to placebo, Modafinil improved fatigue, focused attention and dexterity and enhanced motor cortex excitability in this group of patients.” (I’m including these citations in case anyone else has an insurer or doctor who is ignorant about it.) I have no idea if it’s covered on the NHS? Good luck to you–I do think you absolutely should ask your neuro about it.

    Another thing for some to consider–patients with lesions in the brainstem tend to have more sleep apnea (this turned out to be the case with me).

    • stumbling in flats says:

      That’s so interesting, thank you! Have printed your email off to investigate further.
      I read about someone famous-ish with MS having the drug and it turned her life around. Fatigue is a major problem for me and like you say, it impacts on so many other things too.
      I’ve just woken up after a two hour sleep, which has completely cut my day in half. I now feel quite depressed, even though physically I needed the sleep. Horrible.
      Will find out if the NHS will fund it – could be exciting!
      Thank you so much again!

      • Ellen says:

        I hope I haven’t gotten your hopes up only to cause frustration. I swear I remember reading somewhere that NICE didn’t approve of it for MS, but that was a while ago, and I sure hope that is no longer the case. The research so overwhelmingly supports the use of it in MS, it’s immoral for it to be denied. There was one research paper–out of several–that claimed it didn’t work, but it turned out that even the authors of that paper grudgingly admitted that for patients with MS who have excessive daytime sleepiness, it does improve symptoms.

        Feel free to email me if you’d like more info. I practically had to write a degree thesis on this while fighting my insurance company! I have copies of all of these studies.

        • stumbling in flats says:

          Thank you so much Ellen, really helpful. I could really do with something to stop me sleeping so much during the day. It completely cuts my day in half.
          And if I’m in work, it’s a nightmare after 11/12 o clock. Thank goodness I have such an understanding boss and flexible working hours!!

  9. Ellen says:

    I hear you–it really is a nightmare. I’m so behind with my life. The modafinil isn’t a miracle cure, but it does help, at least for me. Good luck with it. My doctor also tried me for a while on another kind of stimulant that is sometimes used (cheaper and more likely to be paid for by the insurer), but it not only didn’t help all that much, but made me feel agitated and, frankly, unpleasantly crazy. The modafinil doesn’t do that to me. As I say, good luck! It’s so horrible to have to sleep your life away.

Leave a Reply

Your email address will not be published. Required fields are marked *