“Kids say the funniest things”

This week, students in the final year of medical school received their rankings. This tells us our position in the year and eventually has implications for how much choice we get over where we work next year. I found out my position whilst in a beach hut on the East Coast and had a little dance of joy with Mr C when I found out I was (only just) in the top third of the year. Given I have no real understanding of science, have two very cute and quite time-consuming distractions, and areas of nothingness where I used to have brain I don’t think that’s too shabby and I was genuinely pleased with myself (and consider myself lucky that having had children and teaching about obstetrics has given me a big advantage in passing some of the major modules so far.)

Maybe it has changed with time, or with the realisation that other things are important, but I have to admit to not always being comfortable about not being at the very top of the class. My younger self wasted too many tears when I didn’t achieve 100% in tests or when the grade was A- rather than A. Being “clever” has always been the basis of my identity and the most important aspect of my self-esteem. To the general bafflement of those closest to me I have spent only two of the last 21 years not studying for some university qualification or other but I think I am finally done. I literally cannot wait for this course to be over and mark the end of thirty-four years spent in the education system.

As I come to the end of it I have been wondering what the future holds educationally for my children and what I would say if they didn’t want to go to university. For me, leaving home for university at 18 changed the course of my life in uncountable ways. Intellectually, politically, socially and culturally I flourished, distancing myself from a tricky family background and life on a “sink estate.” Doing an arts degree I had time and space to think and read, I made lifelong friends and learnt lessons about love that meant I knew enough about what not to put up with to enable me to see how downright wonderful Mr C was when he came along.

My own children are having a childhood filled with love, stability and opportunity and they are great kids. Don’t get me wrong, they are also loud, infuriating, slightly spoilt and headstrong, but they are still pretty cool. They are away on holiday at the moment leaving me at home so I can get all “rose-tinted spectacles” about them. My daughter has inherited my affliction and “needs” to be at the top of the class. At age 8 she is far too aware of National Curriculum levels and targets and puts herself under too much pressure to be “perfect.” This is not helped by the fact that she has a pushy mother, but I am trying to learn and to give her the opportunity to “fail” at things and for us both to be happy about it. This is a work in progress (she stopped running when it became obvious she wasn’t going to win her race at Sports day) but I hope that when she gets older her self-esteem will be based on more than just being good at maths! She is funny and kind and beautiful and hard-working and she grabs hold of life, with a nature that says “yes” to the opportunities she gets.

Her brother is a little more reticent, a little less “in your face” but then he doesn’t have time to be so because his head is full of the obsessions of five year old boys. He is thoughtful and loving and has an encyclopaedic knowledge of Star Wars and Harry Potter and anything else that has caught his imagination this week. Quite frankly I have never met a boy as lovely as him 😉

When I was first diagnosed, in the darkness of the early hours when it is more difficult to keep up the unrelenting positivity, the tears I shed were ones of fear for my children. I wanted them to have happy, “golden” childhoods, not ones marred by the need to be carers (I blame the films on TV charity appeals and a melodramatic nature for this.) Eighteen months on and those fears have largely dissipated – the good thing about them being so little is that they are essentially completely selfish and so are generally unaffected by things that don’t negatively affect them!

When I was first ill and dizzy this did bother my son because he was still a fan of being carried and I couldn’t do that. Sometimes now when I say I can’t lift him he asks if it is the dizziness (it’s not, it’s the sheer size of him!) but otherwise they are pretty blase. They find my pins and needles mildly interesting, but not as interesting as watching “World’s Strongest Man;” they are generally unconcerned about my legs hurting so long as I can still make them their dinner and remember the stuff they need to do for school. Even during my last relapse it took my daughter about six weeks to notice that she was being ferried to her after-school activities by the parents of her friends rather than me.

Not that we are hiding it from them – we are open about what I have and described it to them as “fluffy bits in my brain.” Last year my daughter, who is sport mad and became glued to the Olympic and paralympics, was delighted to see Stephanie Millward swimming on the TV. In fact she was so delighted she started telling people that I was going to Rio in four years and had good chats with one of her school friends whose dad is in a wheelchair and had represented Britain in Sydney about my medal chances! Her view of MS was thus resolutely positive and we congratulated ourselves on having managed to be open yet unscary and allow their lives to progress as normal … that is until about a month ago when she asked me when MS was going to kill me.

She asked me this as we were rushing to school during a week when I had been able to walk them to school but had not been able to manage the walk home (we live on top of a hill.) Still fully confident that the children hadn’t noticed anything the question floored me, as did the realisation that she had spent the last year worrying that I was getting more and more ill and that the inevitable consequence of that was that I was going to die. She had been waiting for the day when I told her I was better, as I had told her that M was “better” from her breast cancer, and because the day hadn’t come she had just filled in the gaps.

So now we have to fill in the gaps and given that we don’t always understand it ourselves it is tricky. I went to see them at the seaside over the weekend and walked for a mile in each direction along the seafront which is the furthest I have walked in almost a year. Next week I take them to visit friends and family on the South coast and I hope I am really well so I can keep up with them, but I might not be and it is hard to explain why each day is different. I have been enjoying a blog recently where someone talked about refusing to let the MS be the thing that defines her here … our challenge now is to not let my MS be the thing that defines me or the childhood memories of my children.Image

Dear taxpayer…

ImageYesterday it was my best friend’s birthday and a fun evening was spent celebrating it at a local restaurant. There I chatted to another one of her friends and we were discussing a Twitter site “BestoftheMail” which highlights some of the more bonkers comments left by Daily Mail readers. Today I wondered how the average Mail reader would react to my new medication regime – on one hand I am a middle-class, white, British woman, mother of two non-hooligan children, qualified teacher, training to be a doctor, “tragically” struck by illness in my prime – all very respectable and likely to elicit sympathy. On the other hand I am a (gasp) full-time working mother, a leftie, a feminist, a Republican, very keen on Human Rights legislation and multi-culturalism, an atheist and … I am now massively expensive to the tax payer. Not only do I not pay tax at the moment and “scrounge” around £50 a week from the NHS bursary, I now cost the taxpayer an additional £18 a day in a daily injection. AND I have been “gifted” a free sharps bin for my bathroom. I am a drain on society. What would Katie Hopkins have to say?*

So, how has the time between curling up on the floor in fear and injecting myself in hips been? It has been different to what we expected but nowhere near as bad. Since diagnosis I have had three relapses and an infection-induced exacerbation. They have been debilitating but not disabling and only once could I not walk at all. I have not required hospital treatment and have only had four days off work in total. So far, so good – I refuse to lie on the sofa and become “ill” so I make myself live my life as I always have done.

Some things have had to go – I have resigned from my voluntary work and from my role as a school governor, but this could be as easily ascribed to a Candy Crush addiction than to MS. I am giving up my part-time job but who in their right mind studies full-time and works part-time with two children anyway? There are things I can no longer do – I can’t do Zumba (shame), I can’t bounce on a trampoline, I can’t go on rollercoasters, and, with genuine sadness, I can no longer dance for an entire song. This is partly because of the dizziness but mainly because of the muscle fatigue. I can’t stand up for an entire ward round and, when it is really warm, I can’t walk up the hill from the children’s school to home.

Because it is the fatigue that is the real bugger of all this. At the end of every day my muscles and joints hurt. Through the day bits of me will become heavy, or be struck by pins and needles or a weird buzzing in the muscles which feels like a mobile phone on silent. Each day I am struck by a wave of tiredness that means I need to stop doing what I’m doing and have a rest. This is not entirely convenient if I am trying to supervise homework or make tea but it is OK – we are adjusting and I still live life to the full.

The latest relapse was the longest and caused us a bit of worry – I kept forgetting the words for things and stopped wanting to go out with friends, or have people for dinner, or do anything really. Weekends were spent pottering and sleeping and that wasn’t fantastic for the children (like many little boys, my five year old son is like a labrador and needs plenty of outdoor exercise every day!)  My MS nurse persuaded me that it was time to start what they call “disease-modifying therapies.” Beta-interferon is the best known of these but has side effects that can make you take to your bed, or cause/worsen depression, so instead I opted for Copaxone. It is a daily injection but has few side-effects and is designed to try and reduce the rate of future relapses. My relapses have been frequent but relatively mild – the wonderfully upbeat nurse reckons the injections might mean I don’t have another one for years.

I have 362 Facebook friends. I am a really big fan of Facebook; when people tell me they are not on there I am genuinely puzzled as to how they keep up to date with what is going on with their friends and the wider world (apparently they talk on the phone and read newspapers – weirdos.) I have an eclectic mix of Facebook friends – my family, my friends, ex-colleagues, ex-students (now young adults and refreshingly un-Daily Mail), new parents who I taught as expectant parents, old school friends, current co-students and many people who I know only because of the wonderful forum-filled world of the internet. I have decided to pretend that each one of them has individually paid for a day’s injection, which will take me to next summer when I should start paying taxes again. And so I thank them, as taxpayers (or future taxpayers) for allowing me the opportunity to be well – to qualify (please, please) as a doctor, to laugh with my husband, to sweep my boy into my arms for the best cuddles in the world, and to have the mental capacity to answer the very many questions of the world’s brightest and most curious** eight year old.

Now – where’s that sharps bin…?

*Incidentally Katie Hopkins has this week declared that having a children is a luxury in our cash-strapped times and that all maternity leave should be capped at 6 weeks, unpaid. You can find her article in The Huffington Post on Twitter, but not today if you are following the boycott.

** This assertion is not proven fact 😉

Breaking bad news

About the same time as I was diagnosed one of my dearest friends was diagnosed with breast cancer. Our diagnoses were, of course, very different, but we shared similar jobs of having to tell people what was happening, and help those nearest to us to cope with it. But, on a slightly brighter note, it did give us the chance to joke about weird ways in which some people reacted to “bad news.” Often people simply don’t know what to say so they blurt out anything. Both of us heard “oh God, that’s awful, someone I know died of that!”

As I have said, my immediate response when MS was confirmed was one of relief. I had a “genuine” illness – it wasn’t all in my head (well, it was but not in that way!) and there were people I could contact for help and information. So when I phoned my husband I blurted the news almost triumphantly. To this day I don’t know exactly what passed through his mind at that point but I know the next few weeks were dark for him. Before I saw his fear however I told our families, and such was my detachment (denial?) I was surprised that people kept crying. Even my big, brave dad. Reflecting now I can see how selfish I was – I didn’t bother breaking it to them gently. I just told them in a matter-of-fact way accompanied by a declaration that they weren’t allowed to be sad, or feel sorry for me, because I was going to be well and (a phrase that I still revert to) “it could have been something much worse.” I didn’t sugar the pill of phoning my best friend, whose own mum has progressive MS and had been very unwell, to tell her that my antibodies were trying to do the same thing. I became massively impatient with anyone who did what I called the “head-tilt” – I was not interested in sympathy, I made jokes about the implications of living on top of the hill for my imaginary wheelchair, I refused to talk about the possibility of medication, and quipped about buying a replacement for my knackered Mini with the “disability.” Quite honestly I might have been a little unbearable. The people I loved were trying to help and I wasn’t ready to be a person who needed help.

Weirdly, I also developed a compulsion to tell people wherever I went. When I was little my mum used to do this excruciating thing of talking very loudly about my school achievements in public (supermarket checkout/bus/post office etc etc) so people would smile, or congratulate her. I started to do something similar – even when the conversation was about something else I would blurt out the news, often to people I barely knew. I told colleagues, mums at school, even the dental hygienist. And generally they would look at me with shock or sympathy and then I would get a little cross that people were feeling sorry for me. I became ridiculously irritated when my mother-in-law told me they were praying for me at her Church. Conversely, my strongest reaction was to one of my tutors at the university. One of the things I needed to clarify was that I was able to continue on my course so I told one of the tutors and her response was “oh, MS … loads of people get that… nothing to worry about.” And I was furious – I didn’t want sympathy but I sure as hell didn’t want it dismissed. Frankly people couldn’t win. The answer was to stop telling people but I spent almost a year just telling people randomly whilst I came to terms with it myself. I am a little better now but the nature of my course is that I meet and work with new people every couple of months and inevitably something comes up – I need to use my blue badge because my walking is rubbish, or we have a lecture on MS (SO many of these!) which I try to avoid as there are only so many times you can listen to the”horrendous” things that may lie in store – and I tell more people and then watch how they react with a kind of detached puzzlement.

Immediately post diagnosis however the denial was strong. Mr C was left to navigate his emotions without me (luckily my sister and our lovely friends were there for him), whilst also listening to me endlessly talking about how things were going to be fine, punctuated occasionally with unfunny jokes about “going off to Switzerland” when things “got bad.” And then, inevitably, I cracked, and my sister found me curled on the floor sobbing inconsolably. In my heart I was crying with fear for my beautiful friend, and her beautiful daughters, and the horrible things she was going to have to endure, but in my head I knew I couldn’t stop crying because of my own beautiful children, and my brave but scared man, and the uncertainty that was suddenly ours to face up to.

 

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…

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.