Tag Archives: diagnosis

Feb 16 2013
8 Comments
Emotions

Blogging Is The Best Therapy….

Blogging is weird. I started my blog last September. At the beginning it was a much-needed outlet to download my buzzing mind and create some sense out of the whirling thoughts, fears and expectations tied up in a life with MS.

I read a blogging instruction manual from cover to cover. I’m no techie, but I found a blog theme I liked, uploaded a picture and hesitantly wrote my first post, ‘The Loneliness of The Long-Term Diagnosis’ and I was off. I wrote about make-up, round robbin letters, work, emotions, The Teenager, my cat. I wanted to show that living with MS is not solely about symptoms, appointments and restrictions.

Ultimately, most of us are young-ish when we are diagnosed. We’re in the middle of bringing up our kids, working, studying, carving a niche in the world. MS could be re-named, ‘Life, Interrupted’. I wanted to show that life does goes on, albeit in a more serious, more measured manner. Saying that, I wanted to pull out the humour. Tease the threads of how life is different, yet essentially the same. We still worry about exactly the same things, just with a skewed slant.

I was shy when I told people I had started a blog. I had five views a day. Ultimately, I saw the blog as a diary, and perhaps a present I could give to The Teenager when he was old enough to understand. I promised myself I would write for a year only, until September 2013. A year with MS.

Then everything changed.

Life suddenly got more serious. I ‘lost’ my job. I was betrayed by a ‘friend’. I was in a pretty bad place. Blogging took on a whole new meaning. I joke that it kept me sane, but really, it did. The support I had was/is incredible. I used to be dismissive of the ‘blogging community’. Who needs it? I have great friends, right here, on my doorstep.

Ah, but. Connecting with people from around the world, all of us finding ways to live with this vile, cruel disease, has been (words fail me).

So, to all of you who have supported me, made me laugh out loud at your comments, sent me a cheery Tweet – Thank You. Yup, a soppy blog post…..

Tagged , , , , , , , ,
Feb 09 2013
20 Comments
My Ramblings

A Helping Hand in Limboland

sad stick womanSometimes I wish I could go back in time to that terrifying morning when I woke up and couldn’t speak properly or walk in a straight line. If I knew then what I know now, I would have been a very different person. For someone whose father had MS, I knew surprisingly little. I had no idea what  CIS was, what an MRI would show, why I had to have a lumbar puncture.

I was in Limboland. I might develop MS. Or I might not. It is a cruel waiting game. I didn’t understand the ‘multiple’ part of multiple sclerosis. I left the clinic after that first relapse utterly petrified. What was I to do now? I had been given a couple of MS leaflets and information about how to contact the MS team. But if I didn’t yet have MS, why would I be given that? I was bewildered.

I accessed a few forums, one dedicated to Limbolanders and I gained a huge amount of information (a very, very special mention to ‘Rizzo’ who was amazing in answering all my queries). The forums were a lifeline, but at a cost. A lot of people had been stuck in Limboland for years, some well over a decade. Despair and anger oozed from the forum. We were all in a nasty, dark waiting room and I would feel a painful stab of strange envy when someone posted that they had been diagnosed, and were now leaving us behind; they had the golden ticket.

I read everything I could about the McDonald criteria, ticking off the four points bit by bit. Finally (but only 10 months later), I had my ticket. My brain threw up more lesions, far too many and I was diagnosed. Possibly one of the best and worst days of my life.

I wish I had been handed a step-by-step guide to life in Limboland, clearly explaining the whole diagnostic process, the frustrations, the waiting. Could someone please publish this? Letting us know that you have to go through so much, from first relapse to eventual diagnosis. Break us in gently. Please don’t throw us in the deep end.

So, to everyone diagnosed with MS, look out for the Limbolanders. Treat them kindly. Be an inspiration and show them we are not so bad, it’s not so scary. There is a life after diagnosis. Aren’t we all proof of this?

Tagged , , , , , ,
Jan 28 2013
11 Comments
Blogging

Well Hello, Fani!

Honeysuckle writes today’s incredibly funny/poignant Guest Blog post, – I think a lot of us will be very, very familiar with the following:

OK, what’s living with MS like?

It took a while before MS was diagnosed.

While the experts pondered, I named what I experienced FANI: Annoying Neurological Impairment. The ‘F’ is an interchangeable adjective, depending on how things are going: usually the first ‘F’ that comes to mind, but not always.

What with the life threatening, terrifying array of intractable symptoms and myriad of drugs on offer, the diagnosis of MS was a relief. Yes really. So the grief bit (you know, disbelief, anger, acceptance…) was largely skipped. It would be a massive overstatement, ok Big Fat Lie, to say that I welcomed MS. But in comparison, it’s not as scary. Not quite. Not yet.

FANI is challenging and underhand, irresponsible and unpredictable but always interesting. FANI has changed my life, on the whole for the better. No I’m not deluded or drugged, I do think this. Why? Because symptoms didn’t start until middle age and I’m still largely independent. That’s made a tremendous difference to my outlook.

That said, FANI’s not exactly a walk in the park. Initially, the early hours’ recurring loop of: You Cannot Be Serious. How Could This Happen? Tears and fears. Juddering snotty sobs. Eventually (I’m talking weeks here) followed by reflection. Fairness isn’t a concept I’ve ever believed in, fortunately. Prayer is a bit late now. Someone said, “Life is randomly cruel and kind”. This, I can live with.

Those indescribable sensations …why is an ice-cold cobbler’s lathe in my leg? Where did that shower of vibrating spikes come from?

That unrecognisable, hesitant, garbled speech. Who is that? Thanks, people for finishing my sentences with the (wrong) word that …just …… won’t… come.

Cramps…especially in my left buttock. Who gets buttock cramps? Could be funny, but it just hurts. There are few ways I’ve found to stretch and bend a buttock. All suggestions gratefully received.

Other stuff like jerky legs, limpy legs, migrating numbness and gnawing pain, frequent falls, pins and needles from face to feet, running (I wish) to the loo, utter exhaustion, daily injections now all part of the routine.

FANI you remain, grudgingly tolerated but less frightening now that I’ve learned to work around you. Not everything, but I’m getting cannier!

Life is good, although things have gradually deteriorated with each relapse. Orange, my future’s a mood-dependent turquoise or crimson, but you’re right, it’s bright. Because…? Well, shit happens and in the grand scheme, things could be much worse and there are many positives that I’ve come to appreciate. Happy to elucidate if invited back!

Tagged , , , , , , ,
Jan 15 2013
6 Comments
Work and Studying

Why Work?

Quite soon after my MS diagnosis, a few people asked me when I would be giving up work. I was stunned.

Surely now, more than ever, I would need the security of a routine, wages and the confidence boost a rewarding job can give? It seemed to me that to stop work was an old-fashioned view and had no place in the 21st century, when there was so much understanding and support in place.

I stand corrected. Recent research uncovered the depressing facts:

  • More than 75% of people with MS report that the condition has impacted their employment and career opportunities.
  • Up to 80% of people with MS stop working within 15 years of the onset of the condition.
  • Up to 44% of people with MS retire early due to their condition.
  • People with MS lose an average of 18 working years, assuming a retirement at 60.

The report states that with the right support, people with MS could continue to live full and productive lives for much longer, yet during periods of economic downturn and job losses, people with long term health problems feel especially vulnerable.

Research shows that many employers lack knowledge about the condition and may not always understand that the needs of employees with MS can and should be accommodated in the workplace. MS is a ‘hidden disease’ and the extent of its impact is not visible to others and over 80% of us are affected by fatigue.

In my case, my chosen career path has veered off in a completely different direction than pre-MS. I was steadily building towards a new career once The Teenager was old enough for me to work full-time. I am a matter of months away from completing my second degree.  It’s ironic. Just when my whole life was opening up, when I could put the years of child-care behind me and finally take on a much fuller role in my career, along comes MS and puts paid to my plans.

Life has a funny way of turning round and smacking us in the face when we least expect it. I could either crumple or make the best of a whole new situation and right now, I’m planning to work for as long as I possibly can.

Tagged , , , , ,
Jan 14 2013
Leave a comment
Work and Studying

Pass Me The Dinosaur

Who knew? Building work is a bit like being in an operating theatre and I seem to be getting much better at identifying and passing each tool to the boss. When he’s under a bath or sink with water leaking  out from somewhere, speed is of the essence. Unfortunately, sometimes my hands and brain don’t seem to agree, but I muddle along just fine.

I worked on Saturday, my last day with the woman who calls me Alan. The job is almost finished, the skip is twice as full as it should be and I will be sad to say goodbye. It’s been a crazy time and I’ll miss Trixie, the massive dog I sneakily buy treats for.

Anyway, all I had to do was unpack the bits for the sink, toilet and shower, lay them all on the ground and pass them to the boss along with the right tool. Simple.

‘Flathead’. ‘Yes, boss’.

‘Phillips’. ‘Yes, boss’.

‘Smaller Phillips.’ ‘Yes, boss’.

‘Push fits and isolator valves’. ‘Er, um, oh, yes boss’.

‘Adjustables’. ‘Huh??’

‘Don’t worry, I’ll get them myself (rummages in tool bag for ages, sighing dramatically)….these!’

‘Oh, the dinosaur!’ I grabbed them from him and moved the two bits together and actually, it really does look like a dinosaur.

Building can be a tedious and boring business at times, so anything vaguely comical (apart from me being called Alan) is good. I wandered round tidying up, chucked the brush around a few times and we were almost good to go. Until the boss realised the sink was leaking. I passed all the tools, one by one. Then he said, ‘Pass me the dinosaur’ with a pained look on his face. Result! My mission now is to rename each of the tools for a laugh.

I got home tired but happy. Then I noticed that my university books had been delivered. I don’t even want to think about studying, drafting essays or cramming for the exam. It all seems rather pointless, as the career I had planned for when The Teenager was old enough will now probably not happen thanks to MS, but I’ll worry about that another day. I would much rather work out what I can re-name a chisel. Or a circular saw.

Life’s too short to take too seriously…

p.s. where is the snow??

Tagged , , , , ,
← Older posts
Newer posts →