Rebooting

Today finds me three weeks into a four week break from the university and life is good. The children and I have had a fortnight of adventuring – going to the seaside, visiting friends and family, listening to LOTS of Harry Potter in the car, Alton Towers, bike-riding, outdoor theatre and slobbing about in front of screens for a while. Sounds idyllic doesn’t it and it really has been lovely – the best summer we have ever had together I think. And I am well – my body is generally working properly, and despite the irritation of the daily injection and the mid-afternoon fog of fatigue, I feel better than I have done for months. I even allowed myself one rollercoaster in the week and am happy to report that I could still walk/drive/see afterwards.

This afternoon the children are with their grandmothers and Mr C is away at a festival watching bands I have never heard of so I have a day of pottering and time to think. I’m sure my mind should be pondering the difficulties of the situation in Syria or clever, cutting replies I could make to the rude tweets I have attracted from the EDL and supporters of Page Three recently but instead I keep returning to a comment made to me last week about being a mother.

At a summer activity class an acquaintance of mine sat with me to tell me how brilliant her children are. Now I don’t mind a bit of this – I am guilty of occasional gushing and the tiger mother growls constantly within so I understand the impulse to encourage children to do lots of activities and to be proud of their achievements – but what interested me was the unwillingness to concede that they were ever less than brilliant. I wrote above that I have had the best summer ever with my children, but I have had them with me for TWO weeks. We have had something planned every day, I have spent too much money and made too many sandwiches. I know from past experience that I can’t keep this up for more than a fortnight and when the activities/money/energy runs out I don’t have the reserves to keep positive in the face of complaining, squabbling children. I couldn’t manage six weeks of it and, from talking to other parents, I know the long holidays are challenging for many parents.

So, in the spirit of conversation, I asked my companion whether she was looking forward to her children going back to school. She looked entirely puzzled and then replied “but I love the company of my children – this is what I was born to do. Motherhood makes me who I am.”

I have met women who have said similar before when the children were smaller. At toddler groups you would often find me shell-shocked and virtually mainlining Dr Pepper staring wide-eyed at women who told me they had never been so fulfilled and joyous in their entire lives. Whereas I felt panic on a rainy day with nothing to do with a refluxy baby and headstrong three year old, they would tell me all about the wonderful creative activities that would keep their children entertained for hours. Rainy day craft at our house still involves me getting all the stuff out, them making a mess for precisely three minutes, then me wiping up splashes of paint and glue to a background of “can we please put the tele on NOW?” So for many years I have known that I have lacked the patience, creativity and imagination to be a full-time stay at home parent. Even before having my own family there was a reason why I trained as a secondary teacher rather than primary – small children are exhausting!

But I wonder about the “motherhood makes me” stuff. Becoming a mum has made me a better person – I have to be less selfish, more patient … and I eat a lot better than I used to – but it has also meant that the less attractive characteristics are also closer the surface – I have a short fuse, I shout more than I ever thought I would and I am often bordering on tyrannical about schoolwork. I can categorically say that this was not a role I was “born to do” – frankly, some days I am rubbish at it. I envy those who are calm, nurturing, gentle and always in control.

Yet this woman, exuding calm, will always be an acquaintance rather than a friend. And this is because of the nagging suspicion that, for whatever reason, she just isn’t telling the whole truth.

So now I will go and label new PE kits and choke the cat with the protective spray Clarks have convinced me ALL school shoes need. While I am doing it i will continue to be grateful that I have friends who will always acknowledge that sometimes this mothering lark can be less than entirely fulfilling and joyous…

“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.