Why Is MS So Difficult To Describe?

MS CartoonAs if going through the MS diagnostic process isn’t difficult enough, trying to describe MS symptoms to the uninitiated is even harder.

Take the MS hug. Cute name, excruciatingly painful. The first time this happened to me, I was in the office.

The pain came out of the blue, and as I held my ribs in breathless agony, my colleague politely asked why I was rocking in my chair, making funny gasping noises. After I’d told her it felt like a boa constrictor had wrapped itself round my body, she gave me a curious look and continued typing.

Or the exotically named L’hermitte’s sign. Electric shocks in the neck? Maybe it’s all in my head. Uhthoff’s Phenomenon? Try explaining the torture of frying from the inside out, the complete inability to do anything in the heat. The sadness as you watch the world go by from your window, life happening elsewhere, make-up sliding slowly southwards. Or the tragic look I got from my son the other day when he came home from school to find me with a bag of frozen peas balanced on my head.

Tell anyone else you’re heat intolerant (and it’s even got a fancy name) and you’ll get a barrage of ‘Oooooh, me too! Can’t stand the heat!’ I bore myself silly trying to make them understand it’s not just a case of sitting in the shade with a sunhat on, sipping an icy-cold Pimm’s. It keeps you locked in the house, limbs trembling, industrial-sized fan on full blast. With our current heatwave, even my head is trembling so much I look like a nodding dog. Or a weeble-wobble.

What about neuropathic pain? The constant buzzing, tingling, throbbing, burning in my feet and legs. It’s like having mobile phones strapped to my feet, set to vibrate, with a bit of pincushion-y pain mixed in. Or there’s other days when I can’t feel my feet at all.

But the biggie, as we all know, is the teeth-gnashing frustration of describing MS fatigue. No matter how you explain it to other people, there will always, always be someone who says, ‘Oh, I get tired too. I know exactly what you mean.’ Um, no, you don’t. Now, please run into my fist. I’m too tired to punch you.

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47 thoughts on “Why Is MS So Difficult To Describe?

  1. Julie says:

    I don’t wish to seem ungrateful but I dread people saying “how are you?” People would stop talking to me if I answered them truthfully. And I know they are trying to be nice when they say “You look well” but it irritates me, because I am not well, they just can’t see what’s going on inside my body.
    I find it a bore to keep trying to explain what it’s all about, I can’t be bothered.
    I saw a group of friends recently and we were recalling fun times in India. One of them mentioned going overboard with the insect repellent and straight away another turned to me and said “That could be what caused your ms.” Really??? It could have been, but then again it could have been the myriad of other chemicals I have been exposed to over the last 48 years, or maybe it’s because it is in the family, or maybe it’s none of those and is simply rotten luck. She then proceeded to tell me that I could cure it with diet. Zzzzzzz
    I have a friend who I avoid talking to about ms because she has had every symptom that I have and always says “I know exactly what you mean I have…….” Grrrr, no…. you haven’t! I think she is trying to empathise and I appreciate her efforts but goodness she winds me up.
    There are many consequences to having ms and continually having to justify and explain myself seems to be one of the most irritating and I am finding that I am having to put a lot of effort into developing my patience! I think the answer is to not try and describe it unless you really need to, and then don’t get your hopes up that they will understand a word of it. I also try and remember that since they have no personal experience of ms it’s unrealistic to expect them to really understand what it feels like. Frustrating though isn’t it?

    • stumbling in flats says:

      Hi Julie!
      blimey, I know what you mean. If I hear ‘But you look so well’ one more time, I will scream. Very frustrating. It also seems that no matter what symptom I have, someone else has had it worse (and hasn’t got MS).
      It’s not that I want to appear special or different, just to be understood I guess. I think because I’m not ‘visibly’ disabled, I have to justify myself constantly. If I wear make up, apparently I look too healthy to have a chronic disease. If I don’t wear make up, I’m not making an effort. Can’t win either way. I’m sure a lot of people just think I’m putting it on for the sake of it.
      And as for miracle cures, don’t get me started!!!
      I am trying to find some courage to go out in the car. Too, too hot though. Yet another day at home alone, talking to the cat. And my plants.

    • carol says:

      I completely get all this, I have spent the past 6 years trying to explain how I feel & I still get ‘why are you so tired, were you out last night?’ ‘But you don’t look tired’ and many other annoying comments!! I always feel like I need to justify how I’m feeling because I ‘don’t look ill’, I think I just need to start not caring about what others think and just get on with looking after myself as it gets tiring constantly explaining!! Loving your blog šŸ˜‰

      • stumbling in flats says:

        Hi there!
        Thank you very much for the compliment!
        Yup, I think we just need to not bother explaining. Or just hand them a booklet about MS and walk away, lol.

  2. Chris says:

    Hi Stumbles,

    Fortunately, I have never experienced the ‘MS Hug’.

    I have two tips for you regarding your use of a fan.

    Firstly, acquire a hand held garden flower water sprayer. Now, get naked and spray yourself lightly with water. Now stand in front of the fun with it set to max. Enjoy the chill.

    Secondly, find a way to position a freezer block behind the fan This adds a nice chill and is safer than using ice cubes.



    • stumbling in flats says:

      Hi Chris!
      Love your comment – can you imagine what my neighbours would say?! I would love to do that but fear I may be arrested or something. Would not like to appear in the local paper.
      Just seen a rather large man walk past my house without a top on. Yuk.

      • Chris says:

        Just thought of another idea.

        Dont say you are fatigued, just say you have lassitude. You can then dismiss them by saying it is a very complex medical complication.

      • Julie says:

        Really good ideas. If naked is too much how about spraying your clothes to dampen them then sitting in front of the fan? Those Evian spray cans of water are freezing and are good to keep in the car.

        • stumbling in flats says:

          That’s a brilliant idea! Will buy some tomorrow. In the meantime, I have a watering can? Not quite the same thing, but I’m well and truly melting. And soooo bored.

        • wear a bikini/bathing suit?

          when it gets that hot, most of the curtains are closed, so wouldn’t matter about the neighbors. and they should mind their own business anyway, stop being peeping toms :p

          • stumbling in flats says:

            I could still traumatise the cat?? Think of the years of therapy she’d need, lol.
            I may venture out to the back garden a wee bit later. Must remember I’ve got a new motion sensor floodlight!!

    • Ashlee says:

      Hey Stumbles,
      Now,If you can get peppermint oil in a spray bottle (like Chris suggested)and mix it with cool H2O, maybe you could find a little relief. I have heat intolerance also. One thing it does is trigger nausea for me. (Weird I know, but I spent a week in the hospital until they finally deemed the leision on my brainstem could be my problem–your gag reflex is controlled from there.) So, unfortunately the heat makes me nauseated. I’ve also used the peppermint “trick” to keep from getting all hot and sweaty when I have to get-up in front of a group to speak–I get really nervous. Maybe trying to sit in a cool bath if you can? I like your creativity about using frozen peas! I hope you feel better soon!

      • stumbling in flats says:

        Hi there!
        That’s interesting – I used peppermint oil when I was pregnant to stop the nausea and it really worked!
        I had a cool shower yesterday and it was glorious. Also sit in front of my huge fan a lot. Feel ok, so turn it off. And turn it back on really quickly, lol.
        Frozen peas are ace – always keep some handy!

  3. 26C here yesterday, i was melting staying inside :/ people think i am being a hermit and often dot understand heat makes me immobile . thankfully its raining today, so no need for a fan

    unless someone asks, i dont even bother anymore to try to explain ms symptoms, not worth the energy when a lot of people think you are faking or say “me too” um no, trust me, if you had the symptoms i did, 1. you wouldn’t be asking what it felt like in the first place, 2. you would understand why i dont leave the house in this heat, 3. stop trying to turn everything into about being about you :/

    “Now, please run into my fist. Iā€™m too tired to punch you.” i red that at 3 in the morning,(too hot to sleep :/), and burst out laughing, the dog looked at me like i was crazy :p

    • stumbling in flats says:

      Oh I wish it would rain here!!!! Even my cat is too hot – comes in out the sun blinking, bless her.
      Just been out for 10 minutes and that’s enough for today methinks. Newspaper headlines celebrating the heat, the meanies.
      Funnily enough, I overheard an interesting conversation in the shop. Two old ladies talking, one telling the other a mutual friend had been diagnosed with MS. Obviously my ears went into Batfink mode. One said to the other, ‘Oh, well, it’s good that he wasn’t very active to begin with, isn’t it? When’s he getting a wheelchair?’. Meh. I took my bag of crisps and left.

    • stumbling in flats says:

      p.s. think that punching comment is originally from Blackadder! I say it to the Teenager for a laugh. Bad mother.

      • had to look it up, but yep its from Blackadder šŸ™‚ only seen the second series tho *hangs head in shame*

        • stumbling in flats says:

          Great show! I’ll never forget that saying ( so apt). Also, Baldrick dressing up. He had two pencils in his nose and said he was going as a pencil case. Love it.

          • that ep is on iplayer right now, that part really made me laugh and gave me an idea for a fancy dress party lol

          • stumbling in flats says:

            Excellent idea!!! That’s what I love about this blog – we start off talking about MS and end up talking about sticking pencils up our noses!! Love, love, love

  4. How about feeling really terrible at 25 degrees…and not being able to feel better with the fan switched on?

    • stumbling in flats says:

      Completely agree! I’m beyond (swear words). Life is just not going the way I wish it would.
      X (ice cubes)

  5. So true ,it is so frustrating trying to explain MS symptoms even to me work mates who are all nurses

  6. You have articulated it so well (and I LOVE that cartoon you found; made me LOL). Honestly, I think people are *trying* to be empathetic most of the time, but I sincerely doubt they GET it at all when we talk about fatigue especially.

    • stumbling in flats says:

      The cartoon neatly encapsulates everything about MS, lol. I mean, I’m supposed to start dating at some point, so this may be relevant.

  7. Christy says:

    The story was to the point…very good…However, I do see the “But you don’t look sick” comment differently…I always reply with a thank you…I mean…I don’t know how I’m supposed to look, but, I’m quite sure I don’t want to look sick…So, I always take it as a compliment…It was 107 degrees where I live yesterday…So, I just have to stand in front of a fan, without squirting myself with water…I’m wet with sweat…Ha…

    • stumbling in flats says:

      That’s a good point Christy. I know what you mean, it’s just when you’re feeling awful and someone says it. You want to shake them! But yes, I will start to say thank you more often, lol.
      I don’t know how you manage in that kind of temperature!!!

  8. Amy says:

    You literally took the words out of my mouth.

    • Amy says:

      In a final act of desperation, I covered my windows with brown paper to keep out the sun. I seem to be roasting even in the A/C. I’ve spent the past 2 and half days in bed miserable. I truly hate winter and I used to love summer. I still do. I just hate that I can no longer enjoy it like I used to.

      • stumbling in flats says:

        I’m with you on that one. This heatwave is horrible. Beautiful to look at but miserable if you have to hide indoors.

    • stumbling in flats says:

      Thanks Amy!

  9. Katie says:

    Love your blog! I posted this entry on my FB page telling everyone if they don’t understand my symptoms, this is a really good explanation. It’s so frustrating to try and do things in the heat. I have a six-year old who has no understanding (and he’s a child, so he shouldn’t). Most days we end up at the pool if I can afford it. It’s the only outdoor activity I can tolerate. Just the other day my best friend of 22 years told me that she used to think I was just being dramatic when I complained about the heat. But since my diagnosis ten years ago she said she has come to an understanding and now gets really pissed off at others when they question me. I just tell her this is my daily life. There is no use getting angry when those people who question me are just ignorant.

  10. Nancy says:

    I feel your frustration. I have given up trying to explain to my neighbors why I can’t weed my garden or mow my lawn during the months of July and August. The 5 foot weeds annoy some of them, but they need to get over it. Frequently, I wait until the sun is just going down, and there is still enough light left to go out and pull the worst of the weeds. I can usually pull about 10 or so before the dizziness and exhaustion take over. No one seems to understand that 30 minutes tending to the yard work equals 3 hours in bed sleeping.

    My primary care doctor doesn’t really seem to understand either. She keeps trying to find some other source of my fatigue. Maybe, you have sleep apnea, or Fibromyalgia. Maybe I do, but fixing them isn’t going to make the fatigue go away. Head ache and tingly face. I think I will go take a nap. Thank God for Air Conditioning!

    • stumbling in flats says:

      Hi Nancy,
      I can’t believe your doctor thinks there’s another reason for your MS fatigue! It’s one of the most major symptoms. But sadly misunderstood. I went to a fatigue management course at the start of the year, run by an MS nurse. We discussed this and agreed it should be renamed Clinical Fatigue or Pathological Fatigue, to give it more status.
      p.s. wish I had air conditioning!

  11. Mary Beth says:

    I love all the comments here. I struggle with everything that’s mentioned here. My friends and recently, nurses say “oh yeah I’m tired too!” and i say “it’s not the same.” Love your blog!

    • stumbling in flats says:

      Thank you! So frustrating when even your nurses say that. I think we really need to raise awareness of this. It’s so debilitating and people just don’t understand!

  12. Lisa Salvino Dearey says:

    I’m the dummy that sent you an e-mail. I don’t know if I have done this right or not. I’d hit myself, but I’m too tired! Thanks for making me laugh today!!!!!

    • stumbling in flats says:

      Hi there!
      Got your email, thanks! Just scroll down to the bottom of the home page and you can sign up to new posts by email. Bit stupid it’s right down the bottom, but can’t seem to move that section. So I’m the dummy, lol!

  13. Nicole Jones says:

    This is a great article and it explains it so well. A dear friend has MS and I’ve seen the pain and trouble she’s went through and I can’t even fathom how bad it is to feel it instead of just see it. So many people dismiss it and think it just makes you tired. I’ve seen her fall asleep in the middle of a sentence. Funny to me, not so much to her because she can’t help it.
    Thanks for sharing this in a way that people who don’t have it can understand.

    • stumbling in flats says:

      Thank you for the lovely comment! Sometimes humour is the best way to describe something difficult, even though that sounds a bit strange. It works for me!

  14. Barbara C. Smith says:

    I fight MS too. I agree that these symptoms are common but there are ways to overcome them. I use a hyperbaric chamber to detox, and eat gluten free and as much raw as possible, and as few grains as possible. I don’t have fatigue at all. I really believe that the body can regenerate given the right fuel. I take all of the hormones in their natural form. I think this helps give me normal energy levels. I think taking DHEA especially helps me and keeping my TSH between 1-2 with thyroid medication. There is SO much hope and So much we can do to normalize the body as much as possible with this disease. Search out a longevity medicine doctor. Mine has been a lot of help to me and has minimized my symptoms. Blessings to all of you out there with MS.

    • stumbling in flats says:

      HI Barbara,
      You raise some really interesting points and I have to admit, I don’t know much about them.
      Not sure we have longevity doctors here in the UK?
      Maybe you could tell us a bit more about it, or write a guest blog post?

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