Colleen Displaced

one ordinary woman -vs- Multiple Sclerosis

Once upon a time ... (or 'what the?')


Typical for me, I leap right in without thinking too much about what I'm doing.  Overthinker I am not.  

So, a tad late, here I am explaining why I'm here.  Of course I don't have to, I suppose.  But then again that wouldn't be treating my readers (you - hello!) with any respect at all, and I do want to treat you well and reward your visits to my blog, with at the very least some relevant information.

I am here to share my story after diagnosis with Multiple Sclerosis, because I know that many people newly diagnosed may be interested.  I have to say that I don't want to upset any of those people, take heart from the fact that MS is a slow moving disease in many cases - and with all the studies around stem cells a cure seems much closer these days.

Today (2016) there is a rather large gap since I was diagnosed - which was 1997.  Not one to rush in am I?  But here I go - to bring you up to date ...

Initially I had Relapsing Remitting Multiple Sclerosis (RRMS), which is where most are initially diagnosed.  I figure that if you've stumbled across my blog you are probably newly diagnosed with Multiple Sclerosis, or an old hand at living with MS, or maybe a loved one has the same disease and you want to know all you can so that you can understand better what they are dealing with, and/or to be better support for them.  That being said I imagine you're pretty interested in other people's journeys through life with MS.  And here I am, practically a Master of MS.  An expert in my field.  Oh now, that's a laugh isn't it?  True though!

Now MS isn't necessarily all that bad in the earlier stages.  For myself, I continued working full-time for over 15 years after diagnosis.  And I didn't tell any of my work colleagues that those few 'sickies' I'd had were anything more than some strange weakness, in fact I continued the original lie, that I'd had a strange virus that affected my spine.  Well that wasn't an intentional lie to begin with, it's actually what my doctor told me at the first visit.  I was only to learn the real cause around three months later, after another episode of difficulty walking, and visits to a neurologist followed by test after test including an MRI, the clincher, the one examination that finally proved MS without question.

I did tell my boss, after making enquiries of the MS Society as to whether I had to divulge this rather serious information to my employer (I was told that it was my own decision to make, there was no 'law' that meant I must).  And thinking it over I concluded that it was best - so for years, as bosses changed and as I was promoted, I would work for a few months with each new boss and once I had their confidence, I'd let them know, just in case I needed to take a day or a few off, 'sick'.

I rarely had time off due to MS, in fact over the entire 15 years from diagnosis I imagine there were around four or five days taken off work as a result.  MS is like that, most of the episodes weren't visible, strange sensations like pins and needles, occasional vision disturbance, and other relatively minor things that nobody could detect, and that I could live with.  Back then.

Briefly, heaven knows I don't want to dwell on all the ups and downs, nor do I want to bore you - but I have since moved on to Secondary Progressive Multiple Sclerosis.  I suppose that's like a promotion?  Sorry, I am strange sometimes.  Anyway Secondary Progressive means I now have moved on to the 'slightly disabled' stage, where things just don't get better.  It all started when I noticed that after walking for around 20 minutes, that I'd need to sit down, my legs had become very weak.  But just a minute's rest would see me up and walking again, and I could go about my day as usual, as long as I didn't plan to be walking too far.  Nobody could tell.  I looked as normal as anybody else, like I always had.

Until now.  It's been around three years of slow disease progression, as walking became more and more difficult.  At this very moment I can still walk, I still do everything around the home, well I don't mow the lawn or anything heavy like that.  Then again I never did, my husband has those jobs!  But I can still look after myself, and keep the house clean and tidy.  So it's ok.

But.  Whenever I leave the house these days, I take a walking stick.  And I do have a rollator (or whatever those things are called), it lives in the boot of the car for those times where there's going to be a lot of walking.  Often I still don't need any walking devices, I can duck into a shop and buy what I need, without assistance.  But to go to a shopping mall, and window shop, then out comes the walking stick or the rollator. That sort of thing.  It depends on how I'm feeling, and the walking distance.

So that's where I'm at, as briefly as I can explain. 

From now on, in this blog, I imagine I will share my thoughts on all manner of things.  And they will mostly relate to living with MS.  That's it - I'm up to date - ta dah!



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