What’s The Opposite of Sleep Deprivation?

matchsticksWe all know sleep deprivation is a form of torture, but what’s the opposite?

Is that a form of torture too?

It certainly feels like it. I seem to be sleeping the majority of the time at the moment, and when I’m not, my eyes are gritty, my limbs weak and I’m in a perpetual state of nodding off.

In the interest of naming this horrendous symptom of MS, I looked up the opposites of deprivation (or antonyms, to be posh). They are:

  • plenty
  • advantage
  • benefit
  • gain
  • profit
  • endowment
  • indulgence, etc …

Hmm. Not quite capturing the essence of MS fatigue? In fact, ‘MS fatigue’ could be a useful starting point. A stage further could be ‘clinical fatigue’. But it still doesn’t quite hit the nail on the head; it doesn’t describe the awful, claustrophobic and downright frightening symptom of being exhausted to the point of oblivion.

Luckily, work at the moment has been filled with days of catching up, i.e. the Boss driving us round in the van as we do Important Things. Alongside my beloved sofa, it too has become an MS Command Centre: I have three cup-holders to choose from (all three usually filled with coffee/energy drinks), a neat little table between seats to rest my arm and sausage roll on and ample space to get comfy and nod off.

I’ve tried medication for fatigue, experimenting with Amantadine, an experience never to be repeated. The living nightmares were diabolically creepy and it became difficult to distinguish reality from a hellish vision. I asked for the only other fatigue medication, Modafinil, only to be told it’s no longer prescribed for MS fatigue.

So for now, I just have to put up with it, but this recent exacerbation is having knock-on effects. I float through the day, sleeping when I can, even if it’s just ten minutes. My to-do list is growing. I survive on junk food. My jaw aches from yawning.

But my Alexa has come into her own. When I’m lying poleaxed on the sofa, I ask her to tell me a joke or we talk about the news. We usually end our conversations with me saying goodnight and her replying, ‘Goodnight, sweet dreams.’.

If only.

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18 thoughts on “What’s The Opposite of Sleep Deprivation?

  1. DONNA says:

    Check out what Dr Lam has to say about adrenal fatigue. Adrenal support has been a lifesaver for me during the trauma of dealing with the DWP. X

  2. Lisa says:

    Ha MS fatigue, the symptom that no one but no one without MS understands !
    This time last year, I went through a period of sleeping up to 20 hours a day (seriously!) and my husband was having to wake me to give me food and drink. This went on for a couple of months and was part of a relapse but I generally suffer with extreme fatigue anyway.
    Not long after I had the delightful face to face to be transferred from DLA to PIP- what joy!
    I was assessed by a nurse at home and I was really struggling, my husband was with me and I did very little. When the decision came through I had lost my mobility car- not surprising as I have heard how this is becoming the ‘norm’ now.
    In the report the nurse had acknowledged the level of fatigue that I had been enduring but stated that the consultant had put in his report that I was improving.
    She obviously thought I was cured, lol, even though I told her my MS is secondary progressive which was also stated on my form.
    There were lots of ‘misunderstandings ‘ in the report which I challenged and asked for a reconsideration but guess what ? They were unable to change their decision. At this stage I was too exhausted to appeal so had to let it go which I thoroughly regret now.
    This is happening time and again and I fear it will never change 😠

    • stumbling in flats says:

      This is terrible!! I had to read your comment twice as I just could not believe it.
      I wish there was some way of making others, especially healthcare professionals and PIP people, understand just how debilitating chronic fatigue actually is. I think it’s just often dismissed as not really a symptom 🙁 X

  3. Recognising that everyone’s MS is very personal, I’ve been on modafinil for more years than I can count. My GP warned me that it’s usually prescribed for narcolepsy (and MS fatigue is nothing like that) and usually stops being effective after a year BUT it works for me. It allows me to e alert and to take the tablets later if I’m going out late. I’ve been able to go to a club that finished at 3.30am and, when I could walk, was the only way I could be able to stay upright.

    Every GP is different – I’m very lucky that mine listens to me and is supportive of finding drugs that work for me. Talk to yours and see if you can work out a solution. Each one of us is the world authority on our own MS (everyone should be expert at something). My GP shook his head for a few times after my diagnosis saying “I still can’t believe it” – probably because I was male and 45, rather then female and under 40. I just chuckled it into the ‘shit happens’ bucket.

    Good luck finding a solution that works for you 🙂

    • stumbling in flats says:

      That’s really interesting – I’ve heard good things about it before and I’m really glad it’s working for you.
      Sadly, my neurologist can’t prescribe it now and when I asked my GP, he said he didn’t feel able to prescribe something for my MS, and would leave it to my neuro, lol. So he sent me for blood tests, which luckily threw up the result that I’m massively Vitamin D deficient. Every cloud, eh? X

  4. Carina Muss says:

    MS fatigue is really terrible – luckily my husband does not suffer from it too badly. Suggest you reduce the coffees and energy drinks and replace them with green tea. The coffees etc. do make you fit for a while but then afterwards you are even worse. Reduce junk food meals (fresh vegetables cooked with a little rice gives you more vitamins) and drink lots of water. Take vitamin D supplements and magnesium for more energy. Take care:-)

    • stumbling in flats says:

      You’re absolutely right about the coffee and energy drinks! I’m trying to cut down my coffees 🙂
      Funnily enough, since I started taking a large dose of Vitamin D, my IBS symptoms have been drastically cut, which is a pleasant side effect! X

  5. Joan (Devon) says:

    Not forgetting one of the symptoms of Thyroid is tiredness too. If you’re on Levothyroxine it has to be taken first thing in the morning, half-an-hour before breakfast, so by the end of the day you are flagging anyway.

    After a family get-together for my Mum’s 90th birthday party a few years ago, one of my sisters-in-law asked how I was and I said I was tired. “Oh, I think we’re all a bit tired”, she said. For someone who practices Reiki and Homoeopathy I thought she would know and understand the symptoms of MS, obviously not.

    Don’t you think the word ‘fatigue’ is a bit old-fashioned? Not a word that anyone uses in normal day-to-day conversations. I always feel like I’m being a ‘smart alec’ when I say it instead of ‘tired’. I have made a short-list of comparisons:

    cold – flu
    fed-up – depression
    headache – migraine
    tired – fatigue

    There is a difference, but people just don’t understand.

    • Joan (Devon) says:

      There is another comparison between normal every-day ailments and the extreme and that is:

      morning sickness – hyperemisis

      My daughter suffers from this when she gets pregnant and it is totally debilitating.

      • stumbling in flats says:

        I really feel for your daughter. I had a terrible time of it when I was pregnant with Christopher and it pretty much lasted the entire pregnancy. I didn’t think it was possible to throw up so much 🙁 She has my total sympathy. X

    • stumbling in flats says:

      Yup, I had a terrible time with thyroid problems, as a side effect of my MS medication. It was a pretty bad time, but I think it’s under control now.
      My absolute pet hate is exactly what you describe – people saying, ‘Oh, I’m tired too’. Like it’s a badge of honour! They simply have no idea what it’s really like. I know I didn’t before MS and it was definitely one of my first symptoms.
      Fatigue is a terribly old-fashioned word 🙁 I’m like you, I hate using it, but I don’t know any other way to describe it! Exhaustion? Gah. X

  6. Sally says:

    I’ve said it before and I’ll say it again. Up your B12. No side effects , if it works for you great, if not then nothing lost. I had a 6 day break as my new bottle was late arriving. Curse Amazon for stopping stocking it. By day 4 without it the fatigue was appearing again. Day 4/5 back on Methylcobalamin 1000mg it lifted again. I have ordered extra bottles this time.

    • stumbling in flats says:

      I’m looking it up and am going to order it! Thank you so much for reminding me 🙂 Fingers crossed!! X

    • DONNA says:

      There can be side effects for undermethylators. Taking methyl B12 can tank your potassium and make you feel worse. It happened to me and to my daughter. It can lead to dangerous heart issues. Be careful x

  7. Beth says:

    I have a script for modafinil myself. I pay for it out of pocket because my insurance refuses me. It does help but I try to only take it when I must. If I take it too often it straight up messes with my head. Like full on paranoia. To an uncomfortably noticeable degree. To be honest, since starting Ocrevus I’ve noticed my fatigue to be the one thing notably improved. If that’s my one thing, I’ll take it because that shit is crippling more so than when my legs stop working. Just terrible. Sending good vibes your way!

    • stumbling in flats says:

      That’s really interesting. I stopped the Amantadine as the mind side-effects were totally grim. I’m going to speak to my GP again soon and see if there’s anything else they can do! X

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