The Venerable Order of the Uhthoff Vampires

vampire teethUhthoff’s Phenomenon (try saying that without sounding like a muppet singing ‘Mahna Mahna’) is a serious problem for lots of us with MS, where heat can worsen our neurological symptoms.

I am therefore establishing ‘The Venerable Order of the Uhthoff Vampires’ and anyone who’s familiar with the following scenarios is cordially invited to claim free membership:

  • When that big shiny yellow thing in the sky appears, you shake a fist at it before slinking back into the shadows.
  • You have bought (and discarded) numerous hand-held fans but feel a bit daft using one in public.
  • When a friend suggests a bit of sun-bathing at the beach, you’re sorely tempted to whack them over the head with their flip-flops.
  • The very thought of having a sauna is torture and you’d rather pull out your eyelashes one by one.
  • You quite fancy a nice holiday in Iceland or the Antarctic.
  • You’re idea of bliss is to open your freezer and stick your head inside.

For the uninitiated, heat intolerance is like pouring hot oil over already-damaged brain circuits. MS means your nerves don’t fire messages properly, but with a bit of luck, they’ll eventually get through. Add a dose of heat on top of this and you get serious meltdown. My body collapses in on itself, my struggling brain shuts up shop and I go a peculiar shade of pillar-box red.

In the summer, my days are topsy-turvey. I get up around 5 am and stumble around doing as much as possible before the dreaded sun starts shining. Then I lurk at home, fan at full blast until early evening when I suddenly come alive again. Or not, if MS fatigue decides to join forces with Evil Uhthoff and create a lethal combination.

I spend hours peering through my windows watching carefree sun-worshippers stroll past, taunting me with their tans, their bright summer clothes and languid chatter. When people visit my tiny haven of a backyard, they admire the plants and hand-made pottery toadstools then remark, ‘shame you don’t get much sunlight here though.’ Um, exactly?’

So join me in the shadows. Don’t lurk alone. Vampires are bang on-trend. Just look at Edward Cullen and his Twilight buddies (I do, a lot, much to The Teenager’s eternal embarrassment).

Tagged , , , , , ,

29 thoughts on “The Venerable Order of the Uhthoff Vampires

  1. James Pagram says:

    Count me in. I’ve just spent most of the week indoors, tolerating everyone’s rabid enthusiasm that summer’s finally here. I have to reassure myself that as this is Britain things will soon descend into biblical rainfall, hail, plagues of frogs, etc.

    • stumbling in flats says:

      Hi James!
      It’s really hard, isn’t it? Everyone’s so cheerful, firing up the barbies, etc, while we’re stuck indoors. Roll on Autumn….

  2. Samantha Thompson says:

    This has had me chuckling away, always a good start to the day 🙂
    It is overcast and a bit chilly where I am so all good so far! I always thought I was a right weird one for dreading the summer and preferring the winter! Now I know why…..
    My fatigue goes nuts when the summer comes, so the lethal combination becomes a regular visitor.
    Edward Cullen, ‘sigh’

    • stumbling in flats says:

      Hi Sam!
      Always good to have a bit of a laugh in the face of MS, lol. I started noticing it two years ago and didn’t know what on earth was going on. My mum helpfully suggested I was possibly having an early menopause, bless her. Hot flushes and all that. Was very relieved it wasn’t!
      I had a picture of Edward Cullen on my fridge until The Teenager made me take it down in case his friends saw it. Meh.

  3. Jenny says:

    Funny – hubby & I were discussing holidays the other day and I mentioned Iceland. Apparently in June it’s a balmy 12 degrees with 22 hours of daylight! I spent most of yesterday indoors reading – gone are the days of sunbathing – if I’m outside on a hot day it’s either beside water or under a brolly! Thank goodness for tinted moisturiser!
    Jenny x

    • stumbling in flats says:

      Blimey, Iceland is seeming even more attractive now! Just a shame about the price of beer, lol.
      It’s a bit cooler here today, sun is shining but not half as much as at the weekend. Ideal weather. My mum has just taken me out to the shops, most enjoyable! And the house is nice and cool too. Great excuse to buy more ice cream…

  4. Chris says:

    Really sorry struggling with your blogs people who are quite newly diagnosed would not like these facts your facts ! Yes it’s a Alain the arse but life goes on sunshine brolly and cold drinks ,wet towels on feet and chill yes chill , I have been doing it for 25 years in and out of my chair
    This disease love unpositive moods stress self des total it thrives and spread with it.
    Stay positive people stay strong yes I fall over smash walls and bruise all over but I get up or picked up and move on someone is always worse keep you chin up , healthy diet drugs if you want them tried lots but not my thing just got a wine to suit and don’t give the problem to your children I have three healthy happy children and its not heradiary it just like a cancer some do some dont don’t worry the kids 🙂 sorry but last few blogs made me want to say right get up chin up be positive and be happy

    • stumbling in flats says:

      You’re absolutely right Chris. We’ve always got to see the positive side. I think I’m slowly adapting to a whole new life, even the falling over nonsense. And boy, do I bruise!!
      Funnily enough, I am probably less stressed now than before MS – think it puts life right into perspective. Odd but true.

  5. Sally says:

    Hi again, just read your recent post and wanted to share my unexpected finding with my new medication.. About 2 months ago my neurologist suggested I try 4 amino pyridine ( fampridine) to try and help my walking as the distance I am able to walk is slowing decreasing. It’s not available commercially so my local pharmacist makes up my capsules for me. The strength in my legs is much improved and I can indeed walk much much further than before. I can now even manage a walk in the forest with friends when they walk their dogs ( something I have really struggled with for about a year). Anyway the unexpected treat is that my heat tolerance seems to have improved too. Before I have been unable to take a hot shower definitely not a hot bath. Within a few days of starting the drug I was finding my usual shower temperature a bit cool so ramped up the heat and stepped out still able to walk. HOT SHOWER!!!! What a luxury. Have since taken a fairly hot bath ( not too hot – not pushing my luck 🙂 and was still in a good state afterwards. This past week sunshine and heat finally arrived in Belgium and I sat out in the garden soaking up as much vit D as possible. We got up to about 27 degrees and I was not struggling. (Usually I have the same issues you describe – shade is good). I have been googling furiously to see if this benefit has been noticed with this drug for anybody else but nothing. Will check with my neurologist in September when I have my six month check up to see if he has heard of this effect. At first I thought I was imagining it, but no it’s very real and I am thoroughly enjoying my hot showers again. 🙂

    • stumbling in flats says:

      Hi Sally!
      That’s really, really interesting. Haven’t heard of that before, must ask the neuro. What a relief for you to be less heat intolerant and to enjoy walking further.
      Heat intolerance is so darned pesky. Long gone are the days when I could walk round town for hours in the sun. Everything has to be planned so much more, kind of takes the fun right out of it.
      Please let me know if you find out anything more about this drug and what your neuro says at your next check up?

      • Sally says:

        Yeah bruising is a nuisance. I am also ‘blessed’ with off-blue Celtic skin which really serves to accentuate the rainbow of bruise colours. With arrival of sun I put on a summer dress until my daughter mentioned the enormous greeny black bruise on the back of my calf. Ten minutes of work later ( green concealer and make up) and we were down to a dull yellow) just about respectable. Lol. Then I noticed all the rest of the bruises. Gave up at that point. Love me, love my bruises 🙂

        • stumbling in flats says:

          Couldn’t agree with you more Sally! I’m pretty much permanently covered in the blighters. Chuck in the haematoma and I give up!

  6. Tricia says:

    Great read again, thank you, so much to learn, I think it will drive me MADDER LOL

  7. Dunc says:

    This post is such a coincidence
    I’m in Colorado at the moment I was in a climbing comp yesterday on an outdoor wall
    In vail the temp was 30 c
    I went a bit bonkers losing my ability to balance I felt awful and climbed terribly I couldn’t see properly saw stars and just could not recover at all feeling knackered all comp I was in tears at the end convinced I was having a huge relapse
    I was scared and felt shit
    On getting back to my air con room set at 10 I felt better within half an hour
    I knew I was heat intolerant but had never felt this bad before
    Good to hear it’s not just me
    Also good to refer people to your post to explain another ms persons experiences without seeming to make excuses for not winning which I clearly should have
    (para climbing) by the way
    Take care

    • stumbling in flats says:

      Hi Duncan,
      So sorry to hear about your awful experience. The whole heat intolerance thing was a bit of a shock to me and it started happening with no warning, even in low-ish temperatures, or even just getting something out the oven!
      My biggest friend right now is my super-size fan. Before I had it, I would wait ages to get back to normal. Now I just put it on at full blast and I recover far quicker than before. Just another thing to add to the MS list.
      Very impressed to hear about your para climbing. I always mean to try out the climbing centre we have here in Cardiff but with a fear of heights, I’m not so sure!

  8. Jenny says:

    I just wanted to say well done to Duncan! I had a days climbing in the Purbecks, Dorset when I was working at an outdoor store years ago, it was great but I was rubbish!
    I had high ambitions to run a half marathon this year but am struggling with training in the heat – think I’ll have to enter winter races from now on (and maybe just a 10k) !

    • stumbling in flats says:

      Hi Jenny,
      Duncan’s achievements have made me realise I really should pick up my kettlebell, lol. I have been so lazy and all the Maltesers aren’t really helping my cause.
      Duncan’s a real inspiration, so thank you!

      • dunc says:

        Cheers for your comments.
        Keep on keeping cool, in Florida I wore wet clothes every day, works wonders, but they soon dry out!
        Take care

  9. I am joining your Order at once! The heat does wonky things, doesn’t it? I love being in the garden, but it has to be in very small doses or my brain gets all fuzzy. I shudder, ironically, to think of the hours I used to spend lying out in the sun, hopelessly trying to get a tan and broiling away.

    Love that you had a picture of Edward Cullen on your freezer, and that it embarrassed The Teenager (natch)!

    • stumbling in flats says:

      I actually had several pictures, but was too embarrassed to write that before. I think he is absolutely divine! Bit depressing to think I’m pretty much old enough to be his mother though, meh.

      • Well, don’t forget, he’s really — what — 178 years old or something? He just LOOKS young, so it’s totally acceptable.

        p.s. hee hee on the multiple pictures 🙂

        • stumbling in flats says:

          Excellent point! Maybe I should put all my lovely pictures back up again. Just the thing to look at over that first morning coffee, sigh.

  10. dunc says:

    Thanks for your comment, I get very few, good luck with running, that is something I really struggle with, can’t really do
    Take it easy

    • stumbling in flats says:

      You have definitely inspired me to pick up my kettlebell now! It is right in front of me. If I start with one exercise and build up over the days, I might just make it!

  11. Kerri says:

    Have you used the mist fans? Regular hand held fans do nothing for me, but a mist fan cools quickly.


  12. Reikiblossom says:

    I’m still dangling around in limboland but one of the things that is making me suspect ms is the fact I can no longer have hot baths without feeling dizzy(er), shaky and exhausted afterwards. Plus, last time I did, one foot felt the heat more than the other, rather disconcertingly.
    Six years ago, I went to Japan in the summer. My friend and I tried out a traditional ‘ofuro’ -Japanese baths.Lobsters spring to mind, they were so hot! Aside from happily losing a bit of weight, I was fine back then.
    Just over a year ago I began a symptom diary when a kids outdoor summer party turned me into a mumbling,stumbling, forgetful, clumsy oaf.
    I’ve never been a sun worshipper, but I think I might ask for honourary membership of your club?

    • stumbling in flats says:

      You are more than welcome!!
      It’s a most bizarre symptom to have and definitely my first hint that something was badly wrong. Even today after Campath treatment, I still can’t go out in the sun without looking completely ridiculous.
      Huge sunhats and glasses are in order. But honestly, any heat just makes me so weak that I stay at home with the fan on full blast.
      I really hope you get some answers and find out where you can go from Limboland. Not the best place to be.
      But, the lovely thing about MS (yes, there is one), is that the online community is so great and supportive.

Leave a Reply

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