Tag Archives: MS nurse

The Shock Of The New(ish)

I remember a couple of years ago I was in London, along the South Bank.

It was a place I knew really well from when The Teenager was a baby; I’d walk for miles as he screamed for no reason.

I’d stop at the book stall where he was momentarily distracted by the endless rows of colourful paperbacks, having a coffee at the National Theatre (where he screamed some more), then crossing the bridge and walking past St. Paul’s before making my way home to Shepherd’s Bush.

A couple of years ago, I could barely make it onto the South Bank walkway from the hotel I was staying in. I was stunned and angry.

I had a similar experience yesterday. I’ve taken a taxi to hospital for several years now, despite living very near by. As the driver dropped me off right outside the main entrance, I remembered the days back in 2011/12 when I would park outside the hospital grounds and enjoy the walk.

There is no way I could do that now. When did that happen? Mixed up in having to take a taxi due to parking restrictions, I had lost something.

And it got worse.

From the main entrance to the MS nurse clinic, it was a long, long walk. It took me several stages. What happened? I had my stick, so that helped, as much as I didn’t want it to. There were metal benches dotted along the way and I sank into them and pretended to look at a letter or my phone (no reception).

I was truly stunned. I knew things were bad, just not this bad. My walk has always been wibbly-wobbly since MS. I grab things, hold onto any passer-by (never a single, eligible male, sadly), and bounce off the walls. But this was different.

Despite three courses of Alemtuzumab treatment, there is always that lurking thought that my MS hasn’t quite stabilised (although a lot more than it perhaps should have) but it is definitely getting worse.

Frankly, I’m scared. Is it a slippery slope or will it stabilise? Why does the base-line seem to drop continuously? Am I just getting older? Why does my MS still seem to be rapidly-evolving and highly active?

So many questions. The evenings are getting worse, with the nerve pain ramping up around 3pm. There are many evenings I regret getting rid of the telly in my bedroom.

If I could just sort out the pain in my legs, I’d be happy, but I’m already at the highest limit, 600mg a day of Pregabalin. Arms I can cope with – they simply don’t obey, and I’m used to that.

It’s the legs. My freedom, my everything. I feel like a walking med student map, with all nerve channels coloured brightly and buzzing.

I used to think of MS as a see-saw – treatment, better, more treatment, better – but now it seems like one of those slides kids get stuck on. Good to start with, twig in the way, blip, bit more, then sliding to the bottom …

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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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The Ghost of Christmas Past

ghost of christmas past

Mike has written a guest blog post about adjusting to life with progressive MS:

On Christmas eve 2010 I was in hospital for an unrelated illness. I had already been to see my GP about a tingling sensation in my right arm and was waiting for an MRI, so they decided to do it there and then.

Then came the worst Christmas present ever. “You have over 15 scleroses of the myeloma, which indicates you have MS” said the consultant before discharging me to go home for a very uncertain Christmas.

I was 58 years old and had been retired for 3 years. I was driving double-decker buses part time and took part in long distance mountain bike challenges all over the world. Now I drive a mobility scooter with a top speed of 4 mph as I can only walk a few metres, my balance is shot to bits, my life has been completely turned upside down.

That’s the physical side, the mental side is another story. Frustration, fatigue, anger, depression, black holes, lack of confidence, I’ve had them all.

There are many aids available to help with the physical disabilities, mobility scooters, power chairs, stair lifts etc, but the mental side requires a huge amount of self-will , self-management and goal setting just to list a few and this is where I am struggling.

I have a very long-suffering and understanding wife, and Wendy, the MS nurse who is just wonderful. My wife has to put up with my frailties when I fall into the black hole and refuse to talk to her for days and am unable to give any explanation for my behaviour. I get frustrated when I can’t do many of the things I used to do and love – walking the dog, gardening, cycling etc and then become angry, get depressed and the cycle begins all over again.

Over the past few weeks, Wendy and I have been exploring ways of combating these issues and I really do believe with a lot of perseverance and talking to professionals and loved ones, there is light at the end of the tunnel. Dwelling on pre-MS activities and pleasures does not help, but instead looking at what pleasures I can achieve today. Setting realistic targets and reveling in the enjoyment when I achieve them, and always pacing myself to try to minimise the awful effects of fatigue.

Of course, I will never defeat MS, but if I can go some way to combat the pain and misery of that wretched Christmas present of 2010, I am going to give it my best shot.

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Free At Last…..

graduationThe books have been packed up, the paperwork has been shredded and my house has been cleared of post-it notes and last-minute scribbles.

I sat my last ever university exam on Wednesday and it’s all over bar the marking. It’s been a rocky old road to get here. It was a part-time six-year degree and as regular readers will know, I had a fully-functioning brain until two years ago when MS came along and messed around with it.

Since then, it’s been an uphill struggle. I nearly gave up after five years, but quite fancied the (Hons) after my name so ploughed on for another year. It was worth it though and the sense of achievement has been incredible, as was the bottle of bubbly I had waiting in the fridge.

I’ve been lucky. My MS nurse has written a letter in my defence, something along the lines of, ‘…please excuse Stumbling, her cat ate her study notes and her brain doesn’t work properly’. Which is just as well. I struggle to remember my shopping list, so how on earth was I supposed to remember a whole year’s worth of facts, ready to regurgitate onto blank paper? In my shaky handwriting?

It didn’t help when a fellow student emailed me the day before asking if I had revised Esping Anderson. If I knew what it/he/she was, perhaps I might have. As it was, to me it just sounded like an Ikea dining table.

Anyway, I arrived at the exam centre, ignored the last minute swotters, and took my seat. I set out my pens and bottle of water. The woman next to me set out a lucky teddy, three bottles of water, two packets of nuts and a bag of chocolate buttons (where did she think we were, a cinema?). The clock on the wall ticked round to 10am and we turned our papers over.

I was obviously in the wrong exam, sitting the wrong paper and toyed with the idea of pretending to faint. But as if by magic, the words rearranged themselves and they actually started to make sense. Three hours later, and with a lot of padding and random waffling, I was done. I clicked my pen off and shuffled the papers together.

As I left, I noticed the woman sadly pack her teddy away. I stumbled out the building, high on relief and headed home to google Esping Anderson.

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At First I Was Afraid, I Was Petrified…

one tough cookieOn Wednesday, I had an appointment with my MS nurse to discuss how the latest round of Campath had gone.

I had a good chat, did a blood test, made a new appointment for next February and left, happy and relaxed. I’d reached a significant milestone.

This was probably the first MS appointment where the staff haven’t had to virtually prise my fingers from the reception desk and tell me to go home, everything will be fine. I always had just one more question, one more point to raise. I could quite happily have set up camp in the waiting room.

At my very first appointment with the neurologist, I left confused and with a head full of unfamiliar medical terminology, stunned that something so potentially huge could be on the horizon. I wanted to stay in that room forever, boring him to tears as I struggled to make sense of what he was telling me. At appointments with the MS nurses, there was a sense of comfort and safety as I sat in their room, emotions never far from the surface.

Having been thrust into an unfamiliar environment, I very quickly didn’t want to leave. The MS team had an answer to everything. If I could have taken an MS nurse home, I would have. The whole MS diagnostic process probably doesn’t help. Who knew it can take so long? Who, outside of the MS world has an idea what the McDonald criteria is, what oligoclonal bands are?

Not only that, there is the sense that your own world will never be the same. How do you tell your family? How can you cope once you start being bullied at work due to your diagnosis? How bad was my health going to get? The MS team helped me through it all. I was given access to a vast array of support, equipping me to become my own expert of my MS.

It’s been a long two years. When I look back to those frightening early days, I marvel at how far I have come. I’m still me, I just happen to have MS, and I now know exactly how to live with it.

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