MS Is Truly, Horribly Awful. And Then Some.

disgraceIt must be that time of year, but the trolls are back out.

The usual complaints – I make light of MS, I haven’t suffered enough to understand, I am a disgrace. And so on.

So rather than replying to each individual email, here goes:

How dare I complain about MS when I am taking a Master’s degree? – If only you knew how much of a challenge this is. I have no career left; that’s in tatters. My inner compromise was to take on a job to pay the bills but which left me with a void once I got home. So I decided to try my hand at writing. It’s not going terribly well. A victory for the haters?

How lucky am I to have had Alemtuzumab treatment, so how come I complain about MS? ย – Yes, I am hugely fortunate and there is not a day that goes by that I don’t think about this. And you know what hurts? I took this treatment first and foremost to be there for my son – as a single, divorced parent with 99.9% of responsibility for my son’s upbringing, I had to be there for him. My dad died of his MS symptoms when he was 35. I don’t really remember him. And every single day, I am grateful that my son will never face that.

I haven’t suffered enough to understand MS – there’s a reason I don’t blog from my sofa, when I can’t get up and my son cries. If that’s not suffering, I don’t know what is. And haven’t I ‘suffered’ enough, growing up without my dad?

I make light of MS – yes, I do. Sometimes. Read more of my blog – it varies, depending upon what is happening in my life. Some blogs are heartfelt, some are light-hearted. That’s real life, in all it’s glory.

I am a disgrace to MS – I might be, it’s a personal decision how you read my blog. If you want to see how a very normal, boring, fat(ish) woman responds to a huge change in life, read on. A disgrace? If disgrace means campaigning, then yes I do. If disgrace means being a boring fat(ish) woman with MS who just so happens to blog about it, then yes, count me in. MS is not my entire life, it is part of it.

I’m not disabled, so what do I know? – so I only walk with a stick when times are rough? I only fall down the stairs now and again? Or trip over and bang my head once or twice a month? Oh, ok.

I don’t know what I’m talking about – Yes, I do. I know way more than you when it comes to my own MS. MS is unique to every person. So why is mine less valid than yours?

If my detractors would like me to suffer more, be in more pain, have more injuries and give up work, then yes, I am an absolute disgrace to MS.

But, if there is something wrong with that last sentence, then I am, in my own little way, coping with MS.

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80 thoughts on “MS Is Truly, Horribly Awful. And Then Some.

  1. Sian Roberts says:

    Oh dear. I’m so sorry. I do feel there’s an awful lot of negative feeling among people with MS in on-line forums. I may feel differently when I suffer more but it’s getting me down at the moment. You’re doing a great job – I can identify with you. Please carry on.



    • stumbling in flats says:

      Thank you so much!
      Sometimes forums can be a double-edged sword.
      I’m just ME. And I never pretend to be anything else! I just wanted to respond to the haters ๐Ÿ™

  2. people need to get a new hobby, MS effects everyone differently, that is the bloody nature of the disease.

    “I am a disgrace to MS ” huh I don’t get this one, and how would that work? A disgrace how?? People are stupid.

    • stumbling in flats says:

      Yup, sadly, a whole lot of people think I am a disgrace for not being more disabled.
      I do try to understand the frustrations, but I also think we should be championing people who are living, working and thriving, despite an MS diagnosis?

      • exactly! instead of slagging off people who are trying to live life as normal as possible, maybe the same people should be trying the same. and even if a person can’t walk or use their hands properly, in this day in age there is always something they can do if they ask for help, but those people don’t want help and just want to play a martyr.

        • stumbling in flats says:

          That is a very, very good point, and a tricky one.
          In my mind, disability is a state of mind, but for some people, it is their ‘raison d’etre’. A reason for being. And that’s fine.
          Just don’t have a go at me for trying something different?

  3. David Trotter says:

    I would like to be able to tell that “I know how you feel” but I don’t! I’ve been dealing with MS for coming on 12 years and I don’t have a clue! It is very unique to each person and no two people are the same! It’s fantastic that you can do a masters degree in spite of the MS but it doesn’t mean the illness affects you any less! Some people are probably jealous because you are able to fight on and live your life rather than watch it go by! Take care

    • stumbling in flats says:

      Thank you!! What a lovely comment.
      As you say, MS is unique to every person. And if I cope with it’s effects by doing a Master’s,then so be it.
      p.s. Master’s not going that well – have to rewrite my entire proposal, gah ๐Ÿ™

  4. tony cardis says:

    i have followed you for some years now and enjoy your views on our illness. For those that don’t agree, as my Grandad use to say they can go bollocks
    Carry on and ignore the few

  5. David Trotter says:

    Oh dear! Well having to rewrite your proposal will take your mind off the MS for a while! You gotta have something else to focus on otherwise you’d go crazy! ๐Ÿ™‚

  6. Debra Smith says:

    Fortunately, I’ve not been hit by Trolls, but who wants to read a relentless, self-pitying blog about all the awful MS bits anyway? It’s bad enough living with the many different symptoms and it’s personal. I would no more publish things about them than ‘scream such details off the rooftops’!
    OK, I have the occasional rant, but mostly I like to record details about the positive/funny experiences I’ve had, because that’s the type of thing I like to read – it’s my personal bias and that’s OK.
    I only started a blog, because people said it would be ‘good for me’ – don’t really know why ‘cos I’ve never kept a diary before, I’m rubbish at it and I am very cautious about what I disclose and to whom. The fact that any blog/diary etc. probably reflects only a mask/desirable version of oneself is to be expected – People are foolish or naive if they think otherwise.

    • stumbling in flats says:

      First off, am so glad you haven’t been hit by trolls – it’s not pleasant!
      I too am cautious – I’ve been blogging for four years – and now The Teenager revels in his mentions!
      But yes, you have to be cautious, but how better to get frustrations out than to blog?

  7. David says:

    Oh my where should I start, firstly what a lot of stupid bigots must have shit for brains, well got that out of the way. Pause to dunk bikkies .
    I met am ex nurse with MS couple of years ago who slagged me off in front of people at an open day for MS group I volunteered for because I didn’t have MS and why was I waring MS lanyard.
    Any that’s in the past and he’s still a tosser, excuse my words of choice
    Had to fish butter crinkle out of mug ?. Everyone with all types of MS deal with it however they want to, I have yet to meet one who has said why Me.
    You have done exceptionally well to manage the lives of you and the teenager (still off dominos pizza) so keep blogging you should do a video blog, as I and many many others love reading them.
    Lastly for those sad arse bigots who can’t or won’t deal with their own MS well they cam do one!!!!
    So young lady I’d be proud to sit by you anytime ‘not fussy’ only jocking.
    Sorry for some of the phrases but not the feeling behind them.

    • stumbling in flats says:

      Awww, thank you so much!!
      Weirdly, me and The Teenager have talked about making some video blogs – as readers like you will know he’s been from Dominons’s to six-pack!
      My only concern is that I still sound very Scottish and I am often hard to understand. Also, I slur, especially in the evening.
      Maybe I should throw caution to the wind and give it a go??

  8. Isla says:

    You are brilliant. Your posts make me smile. I hope that you don’t let these wankers get you down for any longer than it takes to read their ill-informed posts. Sometimes I don’t look disabled. Sometimes I do. Sometimes I can’t get out of bed. Sometimes I can. Sometimes I can’t be bothered working and paying taxes to give something to society – god bless the NHS etc etc. I always do, just like you do. Because MS isn’t going to beat me, and these tossers aren’t going to beat you. Keep it up Stumbling ๐Ÿ˜€

    • stumbling in flats says:

      You sound just like me!!
      And thank you so much for your lovely compliment – I really treasure it.
      I absolutely love your comment – if I can cut and paste it, I’d be happy!

  9. Angela says:

    Ah, forget those stupid trolls! You bring a smile to 99% of your readers when we get that stumbling email ping, never forget that! You’re an inspiration and a wonderful writer. A big thanks from me (and I’m sure many others!) for all the great and entertaining posts….trolls, pah, forget them and let them wallow in their own self pity! x

    • stumbling in flats says:

      Thank you so, so much!!
      Honestly, I just write about life with MS, plus a fickle Teenager, plus a stoopid cat.
      I know it could be seen as ‘offensive’ to some, but gah, what should I do?

  10. Siobhan says:

    I love that you make light of MS. It makes me smile. I have followed you for 3 years, since I was diagnosed and please don’t let the assholes win. No pressure but be as funny as you want, and funnier if you can.

    • stumbling in flats says:

      Such a brilliant comment, thank you!!
      Have to say, life with MS can be funny. There, I’ve said it. Especially with a Teenager.

  11. David says:

    Your welcome my lovely I may have had a wee rant about the wee tossers.
    A vblog would be great to see don’t worry about the accent some say its better than welsh ? great about the 6pack hope he keeps it up.
    Talking about MS can be a really good thing to do wether it be blog letter or verbal about good and bad days night’s weeks and so on.
    Could you put in the blog some of the comment’s good and bad.
    Careful when you graduate tossing sorry throwing the mortar board in the air, elf and safety reasons hahahaha.
    And finally a big thank you ?

    • stumbling in flats says:

      That is so lovely, thank you!
      The Teenager is away for 8 days (hoooooooray!). But, when he comes back, I will put the v-blog idea to him once more.
      Could be interesting!

  12. Toni says:

    I haven’t come across anything like this, as yet, or to my face, but it does make you want to laugh hey. But, I am at the moment, getting the feeling, that someone is jealous of me being sick!..ok, yep, if you want to be jealous of my fatigue, my red injection blobs (I have just started on Plegridy), my depression, etc, feel free!

    keep fighting though….I’m with you all the way!

    • stumbling in flats says:

      I will definitely keep fighting.
      I have an endocrin appt. on Friday re. my Graves Disease (1 in 3 chance of getting it – I did).

  13. Christine Mountford says:

    Oh my days! People are criticising you for your way of coping and living with this revolting disease?

    We all have our own experience of MS, we all have our own ways of coping. How dare anyone criticise another!

    I have MS and am blessed with my fantastic husband, son and daughter who help me live with it. Most of the time to the outside world, I have a face that reeks positivity but it’s to my family I turn when pain, fatigue and depression get the better of me. I know I would find this disease much harder to live with (and at times cope with) if I didn’t have them.

    So my friend, my admiration for how you approach life, motherhood and your aspirations is inspirational – these are the things, in spite of a shitty little disease, that define you. Certainly not the disease, you don’t have time for that.

    And you certainly don’t have time to waste on jealous people called trolls. So you lot, trolley on!

    This amazing woman is too busy living a life.

    • stumbling in flats says:

      Thank you so much!
      And you’re so right – MS is individual to each and every one of us and my ways of coping are probably different to other people’s.
      I mean, it’s strange that people take the time to write to tell me how offended they are! Why not just find a different blog to read? Always amazes me.

  14. Toni says:

    Ahh, the lucky one. :). Well, I hope you won’t be blogging about Graves Disease lightly! (Yeah, joking). Best of luck with the appt. T.x

    • stumbling in flats says:

      Oh my days, the Graves disease is a whole different ‘tragedy’, lol. It deserves a whole new blog of its own!!

  15. Karen Schlotter says:

    You tell ’em, Stumbling! Don’t let anyone EVER male you apologize
    For your MS! xoxo

    • stumbling in flats says:

      Thank you! I won’t ๐Ÿ™‚
      It’s weird – trolls go in cycles. I’ve gone a whole year with nothing, then suddenly get four emails in the space of a couple of weeks. Trolls, eh? They’re nothing if not boring.

  16. Jenny says:

    Obviously these trolls have questionable morals. I work full time because I have to, teenagers don’t come cheap to keep do.they!? I don’t ” look ” disabled. I’m sure these people would see me as a disgrace too
    But they wouldnt see the times I’ve cried in pain with the burn in my legs or stumbled round the house like last night spaced out from an increase in medication! Or that I’m order to have the energy to work and be with my family, my social life is drastically affected
    .as for making light of Ms, I completely think.thats the way to do it when you can! Your blog is fabulous, I should comment more on it. It certainly helps me validate and accept my own experience of Ms and feel less lonely. So let’s just all be disgraceful together!

    • stumbling in flats says:

      Well said! I’m totally with you. I can work but my evenings are mostly a wash-out and no one can see the leg pain I have either.
      Or the fatigue, lol.
      Sometimes I think you’re damned if you do and damned if you don’t. If I did nothing with my life and blogged about that, someone would no doubt have a problem with that too!
      p.s. thank you for the lovely compliment!!

  17. Toni says:

    Haha, looking forward to the Graves blogs! I totally agree with you re blogging to get your frustrations out. I only started blogging in Feb, (anxious much)?, but my audience doesn’t extend past my lovely friends and family on FB, so, so far all good. T.x

    • stumbling in flats says:

      Keep up with the blogging! It was just my cat who read mine at first, or at least walked all over the keyboard when I was trying to write.

  18. Michael Johnson says:

    Been trolled many times mainly through online games, and some people really do not care what they say no matter how nasty it is. They are a sub-evolution of humankind, somewhere between a primordinal goo and discovering fire. My trolls get angry about something that happens in a virtual world, but yours are on you’re everyday life.

    I naively thought the MS community was in it together, but the teenager is right; haters gonna hate. You are not trying to change the world but rather talk about your journey. Yes MS is different for us all but just a little MS is enough.

    • stumbling in flats says:

      I think people sometimes think they can say anything to other people behind the mask of anonymity. What they forget is that they’re aiming their vile comments against a real person, with real feelings. I’m not ashamed to admit I cried when I read them.

  19. Kirsty says:

    Seriously. People need to Just do one. What a load of B.S. ?
    Don’t judge people, no one knows what someone else is going through in life, MS or no MS.
    Just you keep blogging my lovely. As I’ve said before you make me smile with your blogs and It helps me. ? Xx

    • stumbling in flats says:

      Thank you!
      And yes, exactly, none of us know what anyone else is going through. People need to be kinder and understand that words have a tremendous power to hurt.

  20. Jennifer Pierce says:

    I’m so sorry you are receiving so much negative feedback, I can’t even imagine why people would do that. As I have read all of your blogs and yes they differ depending what’s going on in your life that week, as each week will be different. People making negative comments like that obviously have no experience of MS themselves!!

    • stumbling in flats says:

      Very true!
      My blog is just a snapshot of one life with MS and how it can affect other people, i.e. The Teenager.
      I’m sure there are other things to get worked up about than a tiny MS blog ๐Ÿ™‚

  21. Toni says:

    Thank you. And I dont think I have much choice…everyone has been loving my blogs, and I get asked when the next post will be! Oh, to be popular :). Your cat doesn’t want to be left out! Bless…

    • stumbling in flats says:

      That’s brilliant!
      Keep blogging, keep telling the truth about it. You can obviously write and you know what you’re writing about, so go for it!

  22. Helena says:

    I really don’t understand when some people with MS has to make it into some kinda who is worst off competition. I mean honestly who would want to win that?!? I am fully aware I am one of the luckier ones, but that doesn’t mean that MS doesn’t still ruin days for me. We may all have different symptoms and issues from it, but we can all be reminded that life is not what it used to be before MS one way or another.

    • stumbling in flats says:

      Exactly. Each of our experiences with MS is so unique.
      And, like you say, why would you wish that anyone had more serious MS? Especially if you have MS yourself? It makes zero sense to me.

  23. Teresa McTernan says:

    Where do these people come from? I don’t think I actually know anyone who would write such negative stuff and yet they’re there in abundance as if waiting for the moment to pour venom. Do they spend their time pouring over the internet to see who they can target… The mind boggles for sure!!

    Keep strong!

    • stumbling in flats says:

      It’s just so easy to criticise other people I think? I mean, if they have such strong feelings, why don’t they start a blog themselves??

  24. Jenny says:

    We all know how unpredictable MS is; we all have that place in the back of our minds that deals with those fears I’m sure. But we shouldn’t have to justify ourselves if we don’t have the ” worst ” type of MS
    Your blogging about your job, the teenager lol, it’s all so relevant because it shows how we live with our illness day to day in amongst everything else going on in our lives. As the mother of a just turned 17 son, lots of your blogs are totally spot on, never mind the MS connection!!

    • stumbling in flats says:

      Lol! I think I could write an entire blog about Chris, aka, The Teenager. He never ceases to amaze me!

  25. Nicole Long says:

    I’m in the middle of a 2 year struggle for a diagnosis of an autoimmune illness that until recently the many doctors I’ve seen have told me was MS. Now that they think it is Primary Sjorgren’s I have been looking and reading information for that disease. Despite a different diagnosis I still could not quit reading your AMAZING blog. I can relate to ALL of your symptoms, especially the profound fatigue, use of a cane, and dealing with teenagers. I have two daughters aged 14 and 16, also a 7 year old daughter. I admire the strength and honesty that you portray in your blog. It is your experience and you are entitled to deal with it in any way you see fit! If some people don’t like it, well they need to take their negative attitudes elsewhere. I’m already looking forward to your next blog, and hopefully the next book!? Much encouragement and best wishes from Louisiana!!

    • stumbling in flats says:

      Thank you so much!!!
      Teenager, eh? And throw in a neurological illness and it just goes crazy.
      I really hope you get some sort of diagnosis soon so that you can start treatment. For me that was the key. I knew I couldn’t have anything until that day and it took almost a year of getting worse and worse. A hard time.

  26. Becca says:

    These people will just be down, having a tough time and jealous. I hate it when people complain about aching muscles after they’ve been at the gym. That’s just my every day now! When I was diagnosed your blog gave me so much hope, it made me less scared of the diagnosis as everything else I read was so factual and clinical. Yours was a breath of fresh air so don’t let the hate get you down! ๐Ÿ™‚

  27. This is crazy. Why would you critizise others suffering the same terrible illness?? Anyone with MS themselves should know how awful it can be. They must be very very bitter to say those things to you. You do not owe them an answer! I don’t have a diagnosis but appear to be having my first relapse right now. All I can say I dont wish this on my worst enemy and I’m glad I found your blog to help me relate to someone. Keep going xxxx

    • stumbling in flats says:

      Thank you so much!
      So sorry to hear you’re going through a relapse. Must be upsetting and worrying for you. Stay strong! There really is a huge amount of support out there ๐Ÿ™‚

  28. Toni says:

    Thank you! To receive a positive comment like that from yourself, means a lot to me!. Hope your appt went ok today btw, T.x

    • stumbling in flats says:

      Gah, good and bad. The good news is that they can put an end to my thyroid woes. The bad news is it’ll have to be removed, so I have to choose between radioactive treatment or an operation ๐Ÿ™

      • Toni says:

        oh, sorry to hear that. Either removal procedure doesn’t want to make you jump with joy, but I guess that is where google comes in…research, research, research (like back to our early MS days). :).

        Keep us posted…even to have a rant…that’s
        why we are here. x

        • stumbling in flats says:

          Thank you so much – my MS family is amazing. Truly, I really don’t know what I would have done with you guys these last four years!
          Yup, it’s most definitely back to the research days lol.

  29. Janet says:

    You are an amazing woman and an example to us all. Your blog, and hence your attitude, shows your incredible coping skills. Please remember for every one of those who complain there are many who are silently cheering you on.

  30. Karin Bushey says:

    As your aunt and your late father’s sister I must say how proud I am of you. You are a joy and an inspiration to so many. Never let your detractors dampen your spirit. They should “Stumble in Your Flats for a Day”.
    Uncle Ronnie and I love you so very much.

    • stumbling in flats says:

      Hello and thank you so much!
      It has been wonderful to talk to you recently, despite the thousands of miles between us ๐Ÿ™‚
      Love you both too, very much.

  31. Emma says:

    I am so sad to read this post. I feel saddened that you had to write it.
    It’s amazing that you have written this blog. I can’t imagine how much courage it takes to be a single mum,
    let alone a single mum with MS. I salute you! Keep going, and thank you for bringing us the compassion and understanding that the world needs. Thinking of you, Emma

  32. Carol says:

    We should all have each other’s backs and be supporting each other not causing more pain. My MS is nowhere near as bad as other people’s but it’s MY MS and it affects ME in ways I wish it didn’t, I love your blog so ignore these nasty people & know that for every nasty troll there’s more people who love what you write & support you 100% xx

    • stumbling in flats says:

      What a brilliant comment! Yup, we should definitely be each other’s cheerleaders through this pesky illness. Like you say, these people just cause others more pain. I’ve been pretty upset by the emails. It’s a very personal thing to put your life out there on a blog (warts and all!) so it really did knock my confidence ๐Ÿ™

  33. Samantha says:

    Oh bless you!! I was only diagnosed in December 2015 with PPMS and wanted to find out as much as I could about the illness. I found your blog and bought your book as I find there is a lot to relate to, sadness when needed but an overriding sense of humour, which we all need to help cope and carry on as well as we can. So ignore the trolls, โœŒ two fingers up to them and carry on regardless ? xx

    • stumbling in flats says:

      Thank you so much! And thank you for reading my book ๐Ÿ™‚
      It’s definitely about keeping a sense of humour, even when the chips are way down.

  34. I stumbled across your blog, and I noticed many comments but I still feel the need to leave yet another one! I admire your work, your person and your sense of humor. You have a talent for writing, and I was thoroughly enjoying reading your posts.

    I felt the need to specifically comment here, because this post of yours touched me the most. It is so hard, as a fellow female surviving with MS, to be criticized and judged. I pride myself on being nonjudgmental and openminded. No one has the write to tell another person how or what to feel.

    I think you are doing an incredible job, and thank you for sharing all your words.

    • stumbling in flats says:

      Hello there and thank you so much for your comment and for reading my blog!!
      It’s comments like yours (and so many others!) that make the blog so worthwhile for me. I seriously don’t know where I would be without you all.

  35. Rob Denholm says:

    All of us agree that MS is different for each person, right? It is completely unacceptable of you to deal with it in your own way. I mean, how selfish. How dare you find humour in what can sometimes be an intolerable situation. Shame on you for not handling things in a way that others want you to.

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