Mourning sickness

I recently heard that it’s a good idea to find something to mourn with MS. Something in life that MS has taken from you.

Maybe it’s a good night’s sleep, or the ability to run a long distance or that you’re no longer the party animal you once were. It could be all sorts of things…

Well, I realise this is going to sound bizarre, but I miss being sick.

What I mean by this, of course, is being sick in a conventional sense.

The sort where you spend all day under the covers and concentrate on not moving; where you can settle back into a snuggly bed after a mammoth hurling session* and feel momentarily better in a fuzzy, numb, dozy kind of way.

The sort where life is taken out of your hands for a bit: no work, no kids, no school run, no washing up, no trips to the supermarket, no responsibility at all except to get better. In fact, maybe your other half will pop in any minute now to tenderly mop your brow, plump up the pillows and ask if you need anything.

The other day, I had a smile listening to one of the younger members of staff in our office fretting about job references and the fact they’d had 11 days off sick over the previous 12 months.

Ahh! I suddenly came over all nostalgic for my 20s and how I used to sometimes ring in to work sick on a whim.

While some of these were sick days precipitated by a sudden and debilitating lack of strength involved in the lifting of a warm duvet, and some were the sick days that were self-inflicted by the social event from the night before, there were some actual genuine cases. One food poisoning incident sticks in the mind, particularly.

OK – I’m not seriously feeling nostalgic for food poisoning, but going back further to my school years for instance, I remember slow days of no energy and a gradual build up of nausea with some fondness. Feeling better again and rediscovering food has to be one of the best things in life. Opening a full fridge as a teenage boy on a mission to repopulate an empty stomach is like being handed a golden key to a mystical land of endless opportunity …and last night’s leftover pizza.

Gloriously, there was a day in my teens when I was horrified to find a face full of what I assumed was acne, only to be told by my mum that it looked very much like german measles, that I had a fever and there was no way – NO WAY – I was going to school that week.

I remember nodding sagely, “OK Mum, I’ll just head back to bed,” but with the internal me punching the air, shouting “YESSS!!!”

While I’m a big believer in taking sick days if you genuinely need them (and I know several people who will bravely soldier their way in to work to selflessly redistribute their germs), I haven’t had one for a couple of years. Not bad for someone with MS, eh?

I put my fortitude down to the fact that I’m more in tune with my body than I have ever been before. I am painfully aware that I’m no longer the invincible teen or twenty-something I once was. I am also hugely grateful for working for the sort of employer that lets you work from home if you’re feeling a little bit dodgy, or fatigued, or could do with stretching out in your joggers rather than getting into your work clobber and driving (in my case) the 10 miles to the office.

I also need to keep my sick leave in reserve so that I take it when I genuinely need it and not make a name for myself as someone with the sickness record of a 25 year old.

The drawback to this, of course, is that you might feel obliged to work even if you’re really not up to it. If you’re the cynical sort, it can seem a sneaky way for an employer to get you to work when you should really be taking it easy.

The last time I was off for any appreciable length of time for something non-MS related was when I had taken about 2 and a half hours to drive home in blizzard conditions. A journey that normally takes 15 to 20 minutes. I had successfully and narrowly avoided a collision on a steep downhill; I had dug the front wheels out of the snow when I came to an unavoidable standstill, and after some loud encouragement from a passing RAC driver, crawled (or rather, slid) the last stretch home only for me to suddenly develop something deeply unpleasant and gastric about 5 minutes after entering the front door.

Politely declining my snow-day elated daughters’ offers of a snowball fight, I rapidly ascended the staircase to spend the next couple of days yo-yoing between bed and bathroom. It was either all triggered by the stress of the journey home or my body putting it all on hold until I was somewhere safe.

Of course, when you’re that sick and you also have MS, yo-yoing to the bathroom sounds like an ideal you can’t achieve. It’s more a case of being as still as you possibly can because if you twitch a muscle, vertigo might kick in, and if vertigo kicks in, you have approximately 10 seconds to reach the place you need to get to, to do what you need to do. In those 10 seconds, your legs might turn jelly-like and behave like those of the newborn Bambi on ice as well. There’s no instant relief either – it’s all about trying to ignore the MS symptoms that will have crashed back in.

So I’m mourning being sick in a conventional way… or maybe I’m craving last night’s pizza.

If you have MS (or any other chronic illness or disability) let me know what things you are mourning in the comments .

————————————————————-
* not a session hurling mammoths.

Relapse

Just thought I’d let y’all know that I had a relapse in the last couple of months.

It mainly involved vertigo and dizziness, so I spent a good couple of weeks crashing into things, nearly falling over, feeling nauseous and actually vomiting a few times. It also involved some fatigue, L’Hermitte’s and a not unpleasant hot sensation near my right ankle.

GP reckoned it was labyrinthitis to start with, so he gave me some drugs for that, to see if they worked even though my MS history has been peppered by vertigo. They didn’t, of course, so instead of going back to him, I went to my neurologist. One Dix-Hallpike manouevre later to eliminate BPPV and my first relapse for three years was confirmed.

I was prescribed steroids, but I didn’t take them in the end as I felt I was getting better and I didn’t fancy a week of the side effects.

Thinking about my GP, I asked my neuro about the possibility of an ear infection…

“Can you hear that?” rubbing his finger tips together next to my right ear.

“Yes.”

“And that?” next to my left ear, this time.

“Yes.”

“Do your ears hurt?”

“No.”

“Then it’s not an ear infection.”

So there you go. It was inflammation of the balance centres in the brain stem apparently. I’m very much better than I was, though I did have a funny turn yesterday so I reckon it’s there in the background somewhere.

Doublevision

Wahay! I am off to see an orthoptist tomorrow to talk doublevision.

Doublevision and eye movement problems in general have been my one constant since I had my last major relapse in 2008. My MS history is littered with symptoms and side effects that have come and gone or have fluctuated with other external factors such as stress, medication, temperature, exercise or pure  bad luck. Doublevision has remained constant since the spring of 2008.

Just like the MS in general, it is a companion but not a friend. It is the doublevision that reminds me I have MS when the other symptoms are lying low for a bit. I also think I have the doublevision to thank for the diagnosis – if I didn’t have it in the first place, I may not have made the fateful GP appointment. I would have probably lived with the tingling fingers, the fatigue, the occasional vertigo, even the pain for a bit longer before seeking medical advice.

Doublevision affects me only when I look left. From a single image looking straight ahead, two side-by-side images appear the instant I start looking left and the displacement increases the further I go. When I first discovered I had it, I tested it every breakfast-time by gradually looking left at two chimneys on the next street. These chimneys would eventually match up becoming one chimney with two TV aerials. It never got any worse, it never got any better. One and a half years on, it is still the same.

People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that.

I find that I am constantly screwing up one eye in everyday situations, though, or I would have difficulty recognising people in the distance, crossing the road, participating in meetings and so on.

When I go out for a drink (I honestly don’t drink very much), I makes me feel drunk/ill way before I should do.

It doesn’t normally bother me. It’s constancy means I have learned to live with it. But it does tire me out and this has an impact on my mood and fatigue levels.

There are two possible solutions. One is to wear an eye patch. The other one is to wear glasses with prism lenses. I have no idea what these spectacles look like, so I have the fear of becoming the kid with the sticking plaster holding together a pair of national health specs. But then again I don’t fancy becoming Long John Silver either, therefore I have the orthoptist appointment tomorrow. It has been a long time coming and should hopefully have a positive impact on my quality of life.

A further appointment with an opthalmologist is scheduled for later this month.

One year on …

Today is the first anniversary of my diagnosis (see MS History – part two).

Health professional bodycount so far.

Starting with the first GP visit last year, the bodycount is as follows

  • GPs 4
  • Practice Nurses 2
  • MS nurse 1
  • Ward nurse 1
  • Occupational Health nurse 1
  • Phlebotomists 6 (estimate)
  • Physiotherapists 1
  • Neurologists 5
  • Neuro-psychologists 2
  • Radiologists 4

If you consider the medication as well, I have probably cost the NHS more money over the last year than some of it’s employees.

Symptom recap:

Current symptoms:

  • mild optic neuritis (since Jan ’09)
  • doublevision / nystagmus / intra-nuclear opthalmoplegia / oscillopsia
  • fatigue
  • tingling / pins and needles
  • neuropathic pain in legs

Symtoms that have cleared up for now:

  • L’Hermitte’s sign
  • vertigo
  • muscle weakness
  • involuntary muscle movement

Of the current symptoms, the fatigue and optic neuritis aren’t quite as acute as they were at first onset, so I feel much better, relatively, than I did last year. I think it is important to stress that I still have bad days, though (I nearly fell asleep in a meeting yesterday). Things are also helped by friendlier medication.

Neuro appointment

Off to the big city to see my neurologist tomorrow.

This will be my first annual check-up, so I am not sure what it will entail. My guess is that it will involve the usual tests to see if there has been any change since the last time I saw him plus a discussion about the medications I am taking.

I have been a bit flaky this week, with the heat – I had a bad spell of vertigo while playing with my youngest the other afternoon and I have had background dizziness since. On top of that, a few weird sensations across my body and the fatigue cranked up a few notches.

So I should appear nice and rough for him tomorrow.

Bleurrggghhh!

That’s how I feel.

My better half is wrapped up in bed with a stomach bug, and after a day of feeling a bit bloated I am wondering if I might have the same thing.

I hope not.

Last time I had a stomach bug – a bad one – I spent a night of hell as the MS, particularly the vertigo kicked in. Every movement I made spun the world around a Dave centred axis forcing me to retch as the seasickness took control.

Irony of ironies tonight I was meant to go to my first local MS Society social evening. I have been looking forward to it for ages as well.

But I feel just too bleurrggghhh!

My MS History – Part Five

Between visiting the two consultants, I needed to do my research and also go for a lumbar puncture. I hated the steroids, they had the dual effect of causing severe heartburn, while simultaneously making me incredibly hungry.

At the time it seemed that they didn’t do me any good. Particularly as in the following weeks, I developed a rapid oscillation in my eyes when I looked right (nystagmus) and a strange creeping pain in my feet and legs which for all the world felt like they either wanted to curl up inside themselves and shrivel up or on other days like they wanted to run away on their own. The pain would start in the evenings or on hot days and when I was tired, as early as midday.

After diagnosis, you enter a whole new world. Support networks are everywhere. The MS Society and the MS Trust sent me reams of free information to get my poorly head round. I joined the MS Society for a minimal fee and spent an hour talking to the local rep over the phone.

I found the web awash with discussion forums – some more useful than others.

YouTube seemed to be a mix of useful advice and people moaning about how ill they are.

I was assigned an MS nurse who was to become my contact with the hospital as well as a source of advice and information. She came to visit me at home. I also had a meeting with one of the Occupational Health Nurses at work and my workplace also has a Disabled Workers’ Group who corresponded with useful and supportive advice.

With the information at my fingertips I was able to piece together incidents from my past and build up a picture of my MS history. The most interesting find was a diary entry from four years previously that documented “everything that has gone wrong with my health since starting work at (my employer)” This modest list was as follows:

  • Vertigo. My local practice nurse had told me this was some sort of postural hypotension because it occurred when bending or lying in certain positions. I had a mental image of my aorta being squeezed, every time it flared up.
  • Eye problems. I had flashes and flickering lights in my vision and pain when looking round. I went to my GP, an optician and eventually my local hospital as an out-patient over this and was told that I had symptoms consistent with a detached retina, but apart from that, they were stumped. I pictured the present-day me, in a white coat, leaning over the opthalmologist’s shoulder: “Hmmmm…. how about optic neuritis??”
  • A four week headache that wouldn’t shift with painkillers.
  • Pins and needles on one side of my head.

So there you had it. I had unwittingly documented my first major MS relapse.

Evidence of further MS activity cropped up in other diaries. My diary from the year before diagnosis documented a nasty spell of vertigo. It also showed evidence of fatigue where end-of-the-day diary entries spouted random gibberish and sometimes spiralled off into unintelligible squiggles.

The lumbar puncture wasn’t too bad. The nurse performing the procedure reminded me of someone I knew, so that put me at ease. The local anaesthetic being administered was the most painful bit.

I felt the pop of the needle entering my spinal column and I was surprised to see that my cerebro-spinal fluid was completely colourless. Other than that I didn’t feel any discomfort. Everything had been explained in great detail. I remarked that I had pulled a muscle round lumbar number 4, six years previously and the nurse commented that it was still rock hard and impossible to get the needle through. She did physio for one of the city’s top sports teams, so I guessed she knew what she was talking about.

I was one of the 10 per cent of puncturees who had bad headaches for the next few days and on the third day afterwards (my third day in my new job), I vomited.

Seeing my new consultant was a world of difference the old one. He popped in to yet another session of symptom observation with students in tow, listened to the low-down from his registrar (who amusingly became all flustered) and declared that I obviously had active Relapsing Remitting MS, that I had probably had at least two relapses that year already and that he should put me on some disease modifying drugs as soon as humanly possible.

I had one of those amusing moments like the good vibrations in the MRI. The consultant, wanted to demonstrate to his registrar and his two students how my eyes were moving. I had intranuclear opthalmoplegia as well as nystagmus to demonstrate, so while I followed the path of his pen, I was aware of four pairs of eyes leaning forward and concentrating closely on mine.

I was also set up with a series of testing with the neuro-psychologists to assess the extent of any cognitive problems I might be having, and appointments with my local physiotherapist to assess bladder control. By the time these appointments rolled around, I was well into remission, and seemingly OK, so if anything they will serve as “a useful baseline” to assess any “future degradation.”

One of the marvellous things about a neurological diagnosis is that you get to fly through the MRI of your brain. It is an odd experience and, probably because I was in a vulnerable spot emotionally, quite moving. Seeing it nestling snug inside the thin skull wall, is… dare I say it as an agnostic… an almost spiritual experience.