Scary times

It’s been another hot and sticky day here but the rain has just started and I am happy because my newly-laid lawn needs it. The lawn is a sign that life is slightly different around here. A couple of years ago it might not have been a stretch to call me a “human dynamo” (or “manic” as those closest to me may have had it!) I was enjoying juggling all the balls: studying medicine, teaching adults, raising children, keeping up with the demands from school (“another costume/cake/donation for the tombola? No problem!”) seeing my friends, keeping up with my hobbies and fighting metaphorical fires all over the place. Today I still juggle but the fire-fighting seems to be beyond me – as long as everything proceeds as expected I can keep up, but faced with a dying lawn and looming summer holidays I was paralysed by the very idea of sorting it out. And so, on the hottest day for years, my retired father booked deliveries of soil and turf and laid the whole thing. In effect he rescued us and I have never really needed rescuing before. Both my body and my brain are slower than they once were and this, on the rare occasions when I dwell on such things, terrifies me a little.

It is a thing that in September 2011 never even occurred to me. I was due at the ENT clinic and was 100% convinced they would do their tests, diagnose me with a balance problem that they could fix and all would be back to normal. The fear kicked in when all their tests were normal and the doctor mentioned the scary word “unexplained.” She grudgingly agreed to send me for an MRI to see if there was something going on in the inner ear but her general advice was “live with it.” I had my MRI and heard nothing back so did just that. Apart from a lingering fear that someone was going to tell me I had ME (I did not want a diagnosis that half the country don’t believe in!) life continued to be busy.

December dawned and the atmosphere at the medical school was one of general panic as the end of pre-clinical phase exams loomed. The final module was neurology which is fascinating but tough; I looked at lots of MRI images with a slightly clueless demeanour. And I received a letter asking me to go for a repeat MRI myself. Just that, no explanation as to why, just that I needed another one. I phoned the consultant’s secretary to ask why and, after promising me repeatedly that the doctor would phone back, she eventually told me herself that the first one had “shown something.” I went for my second MRI three days before Christmas, still in the dark as to why. Now, there is a genetic predisposition of some of the women in my family to melodrama, and my usual optimism (referred to by my mother in the past as “annoying Pollyanna-ism”) deserted me. Christmas day saw me cooking a turkey for the family and sobbing into the saucepans convinced that this was to be my last Christmas as I obviously had a brain tumour that no-one was telling me about.

New Year and I trudged back to see the ear specialist, this time taking Mr C with me to hold my hand. We went in and I saw the MRI images on the screen and immediately recognised the distribution of white bits. The doctor had not looked at them before I had come in and read me the report that said they could be consistent with migraines and told me that amitryptiline would fix me. When I commented that they looked like MS lesions she raised her eyebrows, turned to my husband and tutted “typical medical student hypochondria.” It took a fair while for me to persuade her to refer me on to a neurologist and as we left her office  she told my husband that she “guaranteed” there was nothing wrong.

Thinking about this woman now I feel angry. She had missed my original MRI report, she had recalled me with no explanation, refused to answer my phone calls, patronised me and she caused a huge marital row as he could not understand why I was suddenly struck with the utter conviction that I had MS. And it was sudden – I had gone from feeling much better and thinking it was just a case of stress and busyness to a blinding moment of realisation of what we were dealing with. And now I was terrified that no-one would believe me.

Two weeks passed, ironically two weeks in which we were revising MS, and during those two weeks I developed recurrent pins and needles in my feet and legs and my left arm went completely numb. I don’t know now whether this was another “episode” or a psychosomatic response to what was happening but it left me housebound again. Luckily, from the moment the neurologists took over my file diagnosis was straightforward and swift (and following the process for breaking bad news that we are taught)  – I met with the registrar for an hour who told me it was likely I had a demyelinating condition, and a week later met with the consultant who told me it was MS. My clinical history and MRI images were enough so I was able to avoid a lumbar puncture, although I needed a longer MRI of my spine to see what was happening in this latest episode. I walked out of his office unable to use my arm or feel my feet but actually happy that I had received a diagnosis – it wasn’t a tumour, it wasn’t ME, it was a disease that people understood, that was well-researched, where there were drugs that could help and a system that would look after me. This positive feeling lasted precisely as long as it took to reach my husband on the phone and tell him…


Lunchbox pressure

imageThe children’s love of puddings with custard means that I only have to do them one packed lunch a week during term time. School holidays, however, mean holiday club for this first fortnight and holiday club means packed lunches. For the boy this is easy (if dull) – he would happily eat hummus and ham sandwiches for every meal for the rest of his life and if you throw in a banana and a Mr Kipling’s Cherry Bakewell he is in heaven. His sister, however, has different ideas. Worlds away from my 1980s packed lunches of Monster Munch and toffees from my friend’s parents’ corner shop, she has suggested sushi (I knew her life was ridiculously middle class when she told someone, aged three, that “bulgar wheat is my favourite kind of couscous!!”) Sushi is unlikely but I am driven to dig out an unopened Annabel Karmel this weekend for inspiration. AK fills me with a huge sense of nostalgia for the days of weaning and recording each organic purée in my little notebook – a habit that quickly stopped when I had a second child and, at height of his early months of endless screaming, I gave my eldest Quavers for her tea. Life is definitely easier now we all eat the same meals all together but I have to admit to looking forward to thumbing through a kid’s recipe book again (and maybe I will find some inspiration for my own packed lunch which, as an adult, still seems to mostly consist of crisps…)

Dizzily waiting for a diagnosis

It’s Friday evening and it seems that half the women I know locally have gone to see Jason Donovan in “Priscilla, Queen of the Desert.” I am babysitting for one of them (and glad to escape the endless talk of Middle Earth and Super Mario from my boy) which gives me the chance to write something ‘meaningful’ here.
So I thought I’d start at the beginning, of at least the year 2011 when my life took an unexpected turn.
April 2011 found me still in the midst of my own self-imposed mid-life crisis. After twelve years as a secondary school history teacher I had made the slightly rash decision to give it up to become a doctor. Many women respond to having children by wanting to work fewer hours; my response, fuelled by a fair amount of post-natal depression, was to do something even more stressful and demanding.
And stressful and demanding it turned out to be, so much so that at the end of the first year I decided to leave medical school and retrain (again) as a paramedic. My husband, as you can imagine, was delighted with all this to-ing and fro-ing! By April 2011 I was a qualified ambulance “technician” and very much enjoying driving the ambulance at high speeds and ignoring the inner voice saying “go back to med school, those doctors are wearing nicer clothes than this uniform.” What I wasn’t enjoying were the migraines and fatigue but I put this down to working twelve (sometimes fifteen!) hour shifts.
Spring Bank Holiday 2011 saw us going camping with friends to Whitby. I am not a fan of camping but Mr C (the perpetual Boy Scout) loves it and the children (then aged 3 and 6) relished the freedom so off we went! One morning I woke up with pins and needles in my arm and the pins and needles lasted all day but I assumed I had slept on it during the (uncomfortable) night. I felt flat and lifeless for most of the weekend but didn’t really think anything of it (I had often felt lifeless since the birth of the children, especially the second one who, at age 3 had never slept for longer than three hours at a stretch.) When we got home I had a nice hot bath and when I got out I fell over. I assumed the bath had been too hot and that I had fainted which was odd but not scary.
Then two days later I started feeling dizzy. Every time I moved my head the room started to spin. After a day or two I couldn’t get out of bed, nevermind drive an ambulance. I couldn’t watch TV, use the computer or even read (my own idea of hell.) A trip to the doctors got me a diagnosis of labyrinthitis and a prescription for seasickness tablets. I got out of bed and tried to function but I kept falling over in the supermarket (all those colours made my eyes roll and over I would go) and falling off chairs when I tried to talk to someone. The medication was changed and I seemed to get a little better (the vertigo was periodic rather than constant) and the googling started. I remember looking at the list of other possible causes for vertigo and seeing Multiple Sclerosis at the bottom. My best friend’s mum has MS and I remember chuckling at the very idea – I wasn’t THAT ill! With the Internet, a shelf full of medical textbooks and the wisdom of my lovely neuro-physiotherapist friend I was pretty convinced it was BPPV (Benign Paroxysmal Positional Vertigo.) Another change of medication and the GP agreed to refer me for tests. I had been ill for six weeks but it gradually got better until I was only dizzy when I moved my head too quickly and back to work I went…
Six weeks off work however is no good for someone who is going through a crisis of identity, and I had decided to go back to medical school (Mr C didn’t speak to me for four days – four days!) So in September 2011 I had an appointment with the ENT department at the hospital and a new “school” bag for starting my second year of “fast-track” medical school. I felt positive and focused but couldn’t understand why I didn’t feel energised.

Tentative hello

Waving hello to the world of blogging. For a while now people have been suggesting that I start a blog about my recent experiences and I have been resisting a little – isn’t blogging a little self indulgent? Why would I assume anyone would want to read what I say? But then a friend told me that what I have to say might be of help to people who are going through a similar process so here I am. As it says above I wear many hats – mother, medical student, wife, teacher, daughter, friend, sister, aspiring domestic goddess – and for the past couple of years I have been grappling with an unwelcome new accessory – a diagnosis of Multiple Sclerosis. This blog will explore the process of becoming ill and being diagnosed and will also explore how life goes on and the other hats that are still worn. I can’t promise it will be ground-breaking, I can’t promise that it will always be about MS, I can’t even promise it will be interesting, but my hope is that it might give people an insight into living a life with MS and to that end I hope it may be helpful.