Wednesday 9 July 2014

Three Years With Multiple Sclerosis

A selfie of a man (me) in sunglasses
Aren't I a little old to be taking selfies? Probably. But who else is going to do it?

Diagnosed with Multiple Sclerosis: Three Years On

Last month, I arrived at the three-year mark since my diagnosis with multiple sclerosis. Three years! For some reason, this anniversary is hitting me harder than either of the previous two. It's possible that I've now entered some strange post-diagnosis limbo, as I'm not sure if I can still classify myself as newly diagnosed. I still feel newly diagnosed, and I still feel I'm only just coming to terms with my diagnosis, but if I'm not newly diagnosed, should I still feel this way? Or perhaps this three-year milestone is hitting me because things have settled down somewhat - my treatment has settled, as have my symptoms, and I'm now in something of a routine. And ... bleugh ... I still have MS. Yeah, I was really hoping that at some point it'd all just go away. But it hasn't. Which gives me a lot of time to reflect and dwell on where my life is and, more importantly, where it's going.

How Am I?

Well, apart from the old MS, I'm very well - thanks for asking! My symptoms haven't really changed. I still suffer considerable neurological pain, primarily in my legs. This comes and goes and, apart from when it gets really bad, I consider this to be one of my lesser symptoms. To some degree, I can fight the pain; I can try and distract myself from the pulsating saw blade that reverberates deep within my muscles. It's only when it gets really bad, when it overwhelms my senses and ability to push through it, that it really gets me down. Thankfully, this doesn't happen too often.

The worst symptom, however, the worst by a sclerotic mile, is the mind-clouding, focus-sapping, energy-devouring fatigue. And no, this hasn't got much better. It comes and goes, so that some weeks I feel very well, while for others it feels like I'm rarely out of bed, and when I am I'm like an extra from The Walking Dead. Unlike the pain, there is no fighting against or pushing through the fatigue. I have to submit to its mercurial will - when I don't, I invariably make myself worse. A few months ago, I kept a sleep diary for my neurologist and over a two-week period recorded sleeping on average between 16-18 hours a day. Granted that was a bad spell, but even during good times I can sleep an inordinate amount. During my most recent appointment, the neurologist told me it was the worst case of MS-related fatigue he had personally dealt with. For everything, this is incredibly challenging - for your mental health, your spirit, your practical responsibilities. With fatigue, it can feel like your life is being sucked away into nothing.

There are other peripheral symptoms, some of which are probably manifestations of the fatigue, which can make me feel very squiffy at times (that's the best word I've come up with for this - for when I feel very MSey). It's a mixture of everything - my balance feels off, I become clumsier, I have difficulty remembering things, and I can't concentrate on anything. My tolerance for noise, activity and people also diminishes considerably when I'm squiffy. In other words, I become a grumpy git. Unsurprisingly, I hate it when I feel like this.

My wife, daughter and I in Romania
My wife and daughter cleverly synchronise blinks while on holiday in Romania

What Am I Up To?

Oh, y'know, so much! A bit of this, a bit of that ... all kinds of things! Well, I wish it was like that, but I do try to keep myself as busy as my energy levels allow. I'm still not working, which is a source of major frustration. As someone that has always worked, and enjoyed his work immensely, I do the miss the routine and excitement that my job gave me. While in the beginning I was hopeful of making a full recovery and returning to my old profession, I now think this is unlikely. From my own research and discussions with my doctors, it would seem that any symptoms that have persisted for as long as mine are likely to be permanent characteristics of my MS. If that's the case, I don't think my former career as a private investigator is suitable or manageable. I am, however, hopeful of finding a new line of work, and am making active investigations to doing so now.

So what do I do with my time? Well, I write another blog called Lexicolatry, and I'm delighted to say that that project has rescued my sanity a thousand times over. When I first fell ill, I couldn't read well due to cognitive difficulties - however, I was able to read short amounts, and so I decided to slowly work my way through the Shorter Oxford English Dictionary. The blog charts my progress, and each day I post a new word of interest and a short commentary on why I find it interesting. The blog has done well, has a core of regular readers and commenters, and was even nominated for an award last year. To any of you that read Lexicolatry - thank you! I really can't express to you quite how much help that blog has been to me during difficult times, and your readership, comments and insights have been a huge part of that. And if you don't read Lexicolatry, do please have a look by clicking here.

Other than that, I've taken up archery. I miss sport a lot, and although I've tried several times to get back into playing football, I just haven't been able to do it without making myself worse. Archery seems a good choice because it gets me out of the house and is well within what I can comfortably manage, even if I don't get out to do it nearly as often as I would like. I also try and exercise regularly using the gym at the local MS centre in Galway. This has been really, really useful and I would encourage anyone with MS to join their local MS society for this reason. I participated in a three month programme with the University of Limerick studying the benefits of exercising using a Vibroplate machine, and that was organised through MS Ireland. I haven't yet met with the lead researcher to discuss my final results but, despite it being hard work and (at times) painful, I felt the exercises really helped me. I'll write a post on the subject when my final results are in.

Finally, of course, there is my family. My beautiful daughter is five now, and my lovely wife is as caring, patient and supportive as ever. And, our big news, we have another baby on the way! If that doesn't prove there's life in this old dog yet, what will? And yes, to all my friends and family, don't think I didn't notice that raised eyebrow when I told you we're expecting a baby, the eyebrow that said: "Really? You can still ... I mean ... you're still able to ... even with? ... well congratulations!" Our little boy is due in October, and I find it both terrifying and exhilarating in equal measure.

Where Am I Going?

The future is something I spend a lot of time thinking about and, to be completely open, is something I find very frightening. I've always spoken about the horror of being told I have an incurable and degenerative disease, but it's during the quiet moments alone with my thoughts that it can really get to me. How will I cope if I become seriously disabled? How will my family cope? How could I burden them like that? If I struggle now, how will I cope if a serious relapse makes me even worse?

When my mind wanders these dispiriting paths, I remind myself that the truth is blunt: I can't change my future. Of course, I can maximise my chances by maintaining my treatments, living healthily and getting as much exercise as I can, but beyond that it's out of my hands. Therefore, I must make the best I can of the present and not become bogged down with the what-might-be trains of thought. Rather, I try my best to remain optimistic, and I fight the occasional flashes of despondency that surface from time to time.

We're expecting now, of course, so that will dominate our lives for the foreseeable future. I'm also considering a return to college with the view of training in a field that would accommodate my illness, perhaps in writing or languages. I also plan to write more on the subject of MS. A number of people have contacted me saying that they appreciated this blog, and asking me if I would be writing more. Well, yes, I will be, including writing about my own experiences and writing about the (frequent) news that surfaces regarding MS research. If you're not already a subscriber, there's an email subscription box so you can make sure you receive every post.

What Have I Learnt?

Three years of living with MS has taught me a lot. For one thing, I'm learnt not to expect others to understand my MS, or what it's like for me and my family. The blunt truth is that unless you have MS, and unless you have MS with the same symptoms as me, you can't - you just can't - understand what it's like. And that's OK - I don't expect you to. I now try not to judge or become too frustrated when others think they do, or say something insensitive, unhelpful or just downright stupid. In learning this lesson first hand, I think it's made me more aware of this problem, of the impossibility of truly understanding the struggles and hardships of others. In this regard, I think that MS has made me into a better person.

And finally, I've learnt (or am learning) to live in and appreciate the present. While the immediate future might be full of uncertainties and worry, if I allow my mind to pull these anxieties into the present, it will doubtless ruin whatever I have now. Therefore, it's a matter of making the best of what I have and what I can do, rather than fretting about what I don't and what I can't.

This three years hasn't felt like a long time, and I think I probably am still newly diagnosed. But the experience and lessons I've learnt in these three years makes me feel better equipped to deal with whatever the next three will throw at me and my family. And for this, I'm grateful and optimistic in equal measure.

A man in a forest taking aim with a recurve bow
[Insert inspirational quote about aiming for your goals here]
Please feel welcome to leave any comments in the box below.

'Best Blog Post' Nomination with Blog Awards Ireland

This post was nominated in the Best Post category of the Blog Awards Ireland 2014.
It's a public vote, so if you enjoyed this, please consider going to the Best Post list and voting for Multiple Stupidness.
You can get there by clicking here.
Thank you!


  1. What a beautiful post, Eddie. As you say, I know I have no way of understanding what your life is like on a daily basis. But I do feel honored to be invited to witness this aspect of your life, and how your diagnosis fits within it.

    I have no doubt that this coming year--with all its opportunities and emerging plans and changes--will be both a challenge and a continuing source of interest for those of us lucky enough to read your words and occasionally cross paths.

    Of course I hope that your situation improves, and that all goes well for you and your wonderful family. Thanks again for sharing these words!

    All the best,

    PS Thanks again for the gift of the word "squiffy." It really is a delightful word...even if used to describe an unpleasant experience.

    1. Thanks for the comment, Katie - I really appreciate it. And make sure you use 'squiffy' liberally ... it's too wonderful a word to keep hidden!

  2. "And finally, I've learnt (or am learning) to live in and appreciate the present. While the immediate future might be full of uncertainties and worry, if I allow my mind to pull these anxieties into the present, it will doubtless ruin whatever I have now. Therefore, it's a matter of making the best of what I have and what I can do, rather than fretting about what I don't and what I can't."

    You've said it all.

    I devoured the post, great that you'll be writing more.

    1. Thanks Evi ... and you finally got to see a picture of us in Romania! : o )

  3. I wrote a big long comment and it disappeared when I hit publish.

    anyway I was saying thank you for writing this. It is very helpful for those of us who know you personally to try to understand your life and to be a source of encouragement.


    1. Grrr ... that seems to have been happening a lot recently. I get really frustrated at the thought of all the great comments I've lost.

      And thank you - I appreciate the comment. I'm sure I'll be writing a post soon about all the encouragement and support we get from people around us. It really is wonderful.

  4. It's great that, while it's clearly caused you a lot of difficulties, the MS hasn't kept you from enjoying a lot of the good things in life.

    Keep achieving those daily victories. Some analogy about hitting bulls-eyes should go here, but the coffee shop is closing and I don't think I'm going to be able to get the wording right before the wi-fi is shut off.

    Hang in there, and please keep writing.

    1. Hey Nick!

      Long time, no see in the blogosphere!

      (Did you know that the phrase 'long time, no see' originated in the US with people 'humorously' imitating the way Native Americans spoke broken English? I know you're a trivia hound, so I just thought I'd lob that in!)

      Thanks for the comments - I hope you're keeping well and do stay in touch.

  5. Ahhhhh my post disappeared ALSO,
    Great blog , a topic so close to my heart as my husband has ms for the last 15 yrs diagnosed when he was only 15 yrs old, thankfully his symptoms are not too severe and we'll controled. We are also due our 2nd baby in Nov so exciting times ahead, my husband does not reflect or think out loud very much about ms and so it was good for me to b reminded of the fears associated with the future making me more sensitive to his thoughts, sometimes I can get blinded by my fears ,
    Best of luck to u for the future

    1. Congratulations, Jean! Exciting times ahead for both of us.

      Thanks for your comment, and welcome to Multiple Stupidness. I'm glad you enjoyed the post. It is difficult to articulate all you're feeling sometimes - I think I'm better at it in writing than I am verbally, which is one of the reasons I decided to write about our experiences as a family.

      Best wishes to you and your husband.