Category Archives: Blogging

May 12 2014
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Blogging

You Don’t Know What You’ve Got ‘Til It’s Gone….

teddy bearA lot of you know I gave up blogging a while back.

And yet here I am again.

I gave up for a lot of reasons – lack of time, a need to move away from multiple sclerosis for a bit, family stuff.

But you’ve also probably noticed I just can’t keep away.

It really hit home to me with my last blog post just how much I respect and value your opinions, comments and experiences. I had a terrible week – that awful, all-enveloping depression landing on me out of nowhere. I didn’t know where it came from and I didn’t know how to get out of it.

Just as abruptly, it lifted. But what got me through the last few days of it was your support.

Without sounding too much like a schmaltzy Hallmark card with a teddy bear on it, I really missed you guys!! You talk a lot of sense – a lot more than I do.

I’m going to think of this stage of my blog as Part Two (or Deux when I’m feeling pretentious). You all came with me on my journey through MS, the discrimination, the struggles with studying, finding a new job, coming to terms with every aspect of MS. And not forgetting The Teenager and his Dramas, i.e. run out of yoghurt or crisps.

So, yes, Part Two. What’s next? I still have down days, but they’re more and more outweighed by the good. Life has settled down. I have the best job, working with my best friend. I’m starting my MA in creative writing in September when hopefully I’ll be able to call myself a proper writer, jotting down wandering thoughts about clouds, the meaning of life, etc…

The Teenager is (at the moment) behaving himself and at least giving a good impression of studying for his GCSE’s. I still have to fumble my way through clouds of Lynx and pick my way over dropped clothes on his bedroom floor. Newsflash – he opened his window AND curtains yesterday. I think the fresh air made him slightly giddy, as he printed off a revision timetable.

Anyway, I can’t say how often I’ll blog but judging by how much I have missed your words of wisdom, I’m here to stay for the foreseeable future. Hope you’ll take me back….

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Mar 18 2014
61 Comments
Blogging

That’s All Folks

that's all!Well, that’s me, wrapping up the blog.

I’ve been writing since just after my diagnosis, through the legal case at work and throughout coming to terms with MS and all it entails.

Without your support and feedback, this blog would not have happened.  A huge thank you to you all for reading and commenting.

What a journey! We had fun. We laughed and cried. The Teenager grew up (and then some).

All that is left to say is Thank You. XXX

Mar 02 2014
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Blogging

Got MS? Help Yourself!

digmannJen Digmann is my guest blogger today. Jen and her husband both have MS and use their experiences to help empower others. Check out their website here.  

When I decided to marry Dan, I knew there would be a few certainties in my future. I knew I would be hearing and seeing a lot from Mr. Bruce Springsteen. Likewise for baseball games. Both which I’ve done gladly.

Another thing I knew was I would become the co-leader of Dan’s MS self-help group. I gladly have done that as well After all, I also am living with Multiple Sclerosis.

Something I always tell members of our group is that I firmly believe the more you know about this unpredictable disease of the central nervous system, the better you are able to live with it.

I am lucky that information about MS is pretty easy to obtain. However, after living with the disease for nearly 17 years, I’ve realized that finding credible, accurate information may take a little more work. With more than 400,000 Americans also having MS, you are bound to hear the occasional, “Yeah, my aunt (or neighbor, coworker, or other relative) also has that and she started taking cold pickle juice baths and only eats orange-colored food, and she’s cured!”

Well-meaning advice, but not exactly the most reliable resource.

A person with MS can talk with his or her neurologist, check out trustworthy websites like nmss.org or healthline.com, or look into self-help groups.

Being the co-leader of one such group for the past eight years has been both a privilege and an awesome way to meet others who understand what I’m living with and to also constantly learn about MS. And sometimes I may think Dan and I know most everything about the disease, but then I realize there is still a lot we can learn.

As the meeting was ending, I quipped something about my trigeminal neuralgia, and sure enough Sherri chimed in how miserable that condition is. I never knew she was dealing with this too! It almost felt like a put-on-another-pot-of-coffee-we’re-not-done-yet kind of moment. Don’t you love meetings like that?

She and I were talking about this obscure symptom, and our group’s general consensus was: MS is strange like that. This statement led Dan to talk about the tight banded feeling he was experiencing in his midsection. “Yep, that sure sounds like the MS Hug to me,” Dawn and Rhoda enthusiastically agreed. Really, we needed that coffee.

Next thing you know, we were hurried out of our meeting space because the attendees for the next event were there.

As we gathered up our belongings, we chuckled about the great friendships we’ve made because of Multiple Sclerosis. And I couldn’t help but smile a little more as I reflected on how in eight years I’ve become a baseball watching Springsteen fan who looks forward to co-leading a great meeting on the second Saturday of every month.

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Feb 16 2014
6 Comments
Blogging

My MS’s First Birthday

Carly's BlogCarly is my guest blogger today – she experienced her first MS symptom at just 17 years old and was finally diagnosed at 26. She has a wonderfully positive outlook on life. Have a read, she’s inspiring:

My MS’s first birthday, 4/02/14 (although like the Queen, it has two).

I always thought I was a bit odd. Things would happen, but I didn’t feel confident telling people, and anyway, the ‘things’ would go away eventually.

I was 17 when I had my first bout of Optic Neuritis, and I felt confident that losing the sight in one eye for 6 weeks was worth mentioning. After several visits to my GP and the opticians, it was put down to a migraine, and as I was currently studying for my A-levels, it made sense that it could be stress induced. Well, made sense to other people, unbeknown to them I wasn’t keen on education and spent most of my time playing pool in the pub near school, or doing extra shifts at work.

Anyhow, that’s not to be recommended. It was a couple of years later I had lhermitte’s sign and transverse myelitis, but this was put down to trapped nerves. And I was cool with this, and that’s how my life went until 15 months ago, when aged 26, my body just gave up on me. A couple of nights in hospital, an MRI and an LP, and I had a provisional label.

MS. That sounded pretty serious. Like many people, when I thought of MS, I pictured wheelchairs, walking sticks, and older people. I worked 60 hours a week, rode a motorbike, travelled, drove 30,000 miles a year, and walked my dog twice a day. However a bit of time on the internet, and I soon realised what MS was, what it did, how it manifested its self, and that I most certainly had it.

When I finally saw my neurologist two months later, on 4th Feb 2013, I was ready for the diagnosis, and left the hospital feeling lighter than I had in ages. This didn’t last, I was soon back on the rollercoaster of emotions, but people were there for me; my MS Nurse, MS Society forums and help lines and I won that battle. I know I’ll never win the war, but that’s OK

My nurse came to see me today (though I think she really came to see Ollie, my dog). We got on to my emotional/physiological wellbeing, and I can honestly say I am the happiest I have ever been. I work 40ish hours a week, the motorbike is being sold (but that’s due to a whiplash injury), I travel, drive 20,000 miles a year and walk my dog twice a day.

Last year, pre big relapse I cycled from London to Brighton. I know I am lucky, I’m still very able bodied, but I’ve also got a new outlook on life. I’m grateful for what I’ve got. I have days where I simply cannot do anything, when I get tired I drag my left leg and dribble (yup, still single!), I struggle getting my words out, forget what I’m saying and often what I’m doing. My left leg is currently on fire and the often visited toilet has relocated to the top of Mount Everest.

But, I have wonderful family, a job (and employer) I love, the most handsome dog in the world, and a small, but perfectly formed group of friends, and I intend to enjoy it for what it is, and take each day as it comes. There is that saying, ‘life is too short’. For me, life as I know it is short, but it is still life, and for that I am grateful.

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Feb 02 2014
10 Comments
Blogging

Access Denied

Randy McNeilCanadian Randy McNeil is my guest blogger today.

He was diagnosed with MS in 1999 and was given chemotherapy treatment, Clyclophosphamide.

After having to give up his career as an industrial millwright mechanic, he returned to college to study community justice and services. And this is where he was confronted with a new set of problems…

Wheelchair ramps – they can be the best thing. When I was still walking, I was happy to see them becoming more commonplace for people with mobility challenges. Then in 2006, MS changed my life by taking away my ability to walk. Suddenly I now had a disability and a new way of life bestowed on me.

I accepted this and got an A-4 Titanium wheelchair, started a new journey and went back to college.

Whilst there, a new building was being constructed and I thought, great, it’ll be built with a better standard of accessibility than the other buildings on the campus. In fact, it was worse. I got the construction superintendent to come over to the ramp in question and challenged him. His reply?

‘I’m not going to argue with you, it’s been passed by the building inspector.’

‘Well get into this wheelchair and show me how you can use the ramp.’

‘I can’t do that.’

‘Why?’

‘I’m not as strong as you are….’

  • Unable to get any further response, I went to the newspapers – read my story here and see for yourself the excuses they came up with!
  • After graduating, I began travelling around on public transport and discovered a problem with community accessibility – just because a bathroom has grab bars does not make it accessible. Again, I got nowhere and contacted the newspapers. This got results immediately and they changed the bathroom stall on the same day! Read about my success here.
  • Next, I took on the local mall – why should I take my life in my hands just to get there? Read what happened next.

Why stop there? I have now started a global petition to persuade Google to include an accessibility option on its worldwide maps. Please take a few seconds to add your signature.

Together we are stronger.

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