Happy Belated sister day

Apparently it was National Sister Day on the 3rd August and I’m afraid to say I missed it. Coincidentally I did spend it with my adult sister drinking cider and laughing so that’s good. My littlest sister gets to have a more exciting end of August as she turns 16 on Saturday AND gets her GSCE results tomorrow. Those of you with siblings will know that, for ease, people will insist on categorising you as the “clever one” or the “funny one” in the family. Indeed I was the “clever one” for a while (along with also being the bossy one, the organising one, the stressy one etc etc) Being the eldest of five means the latter personality traits are inevitable, or so a Facebook poll told me the other day.
Anyway, given my advancing age, the holes in my brain and the intellect-eating fatigue that affects every parent of young children we can all safely say that littlest sister has, deservedly, assumed the “clever one” label. She is also beautiful, popular, kind and caring and I am blessed to have her in my life (as I am blessed by all my other siblings.) She wants to be a doctor and she will be a brilliant one I have no doubt.

And now I can tell her what being a doctor is really like because I have completed my first fortnight. I am still standing and haven’t, regardless of what the media leads you to believe about ALL new doctors, made any fatal mistakes (although I admit to lots of small ones.) And I haven’t told anyone on the ward about my MS which is a bit new for me. HR know, the car park office know (hurray for energy conserving closer parking) and my senior supervisor knows but I thought I might just not tell my new colleagues. Let them get to know the real me rather than the me seen through pity spectacles. And it’s working. They seem to like me. Apparently I am cheerful and energetic (!) I am particularly good at admin, doing as I’m told and maintaining a thick skin when being shouted at by other medics and so far that seems to be my role as a junior doctor. And I love it. Today I told a patient I would come to work even if I didn’t get paid, although I didn’t add what a relief it is to FINALLY be earning again.

Last week I almost fell back into the blabbermouth trap again – I was treating a patient who happened to have MS who was telling me all about Disease Modifiers and her typical symptoms and her day to day life with the condition. Too many times I had to stop myself from saying “me too, me too.” But it has struck me that, as a medical student I could naval gaze about my condition and tell everyone around me about it in the name of “education.” But now my role is different. None of this is about me anymore. My background, home life and medical history may make me an empathetic and holistic provider of care (I hope so) but the patients don’t need to know. They need me to be smiley, competent, kind and effective … to not hurt them when taking blood and to not nick their chips at dinner time.

Tomorrow my sister will listen to the news programmes tell her that her achievements aren’t as amazing as they will be because the exams are getting easier (nonsense). She will then probably enter medicine via the “traditional” route (as opposed to the midlife crisis route I chose.) She will do science A levels (yuck) and grab every opportunity to enhance her CV to convince someone in an office somewhere that she is a well-rounded person. She will need perfect grades, work experience, to cultivate outside interests and find time to read newspapers at the expense of slobbing in front of the TV and hanging out with her friends. She will cope with the pressure but I shall watch on, saddened, just as I was as a teacher by all the unnecessary pressure we put on our young people at a time when they should be spending time just becoming adults. I can’t imagine how I would have coped with the hell that is AS levels – the extra exams thrown in just when you thought you had earned a whole year without them. But she is energetic and driven and will compete with all the other ambitious, clever young people her age to get to pursue her dream and will go and live life as an undergraduate medic with time to study, party and meet new people. She may end up being one of those young women who now ask me “how do you do it? How did you manage studying with children and how will you do this job with children?” And I will look at her, as I do at some of them and say “you have battled to get this far. The world is still your oyster and life can be what you want it to be. Keep pushing for what you want because who says you can’t have it all.”

Happy birthday H, and whatever happens tomorrow we are all massively proud of who you are and what you will be.

Lazily buzzing through flowers and trees…

So that’s that then. Medical school all over. My job starts at the end of July (conveniently just as the children break up) so until then I am on “holiday.” Three weeks in and so far I have moaned about it to everyone I have seen. I am VERY bad at relaxing; a spa day would be my idea of purgatory. I like being busy, and having a massive to-do list which I can then also moan about to everyone I see. Don’t get me wrong, I have a mini “bucket lost” for this time off which includes experimenting with kitchen gadgets, reading the books on every major prize shortlist this year and crocheting a blanket but three weeks in I don’t seem to have made any progress with these projects because my body has reacted as it always does to “down-time” by shutting itself down.

If you have been following the blog you’ll know that I have been relapse free for almost a year now since I started on the copaxone. I have had a couple of wobbles in the last 12 months but am actually very well healthwise at the moment. Apart from the fatigue that hit me last week. MS doesn’t have many universal symptoms but fatigue is one that seems to affect everyone. The “science’ behind it seems to be that it requires more energy to send signals along unmyelinated nerves and therefore our brains get tired much quicker than normal (sadly it doesn’t seem to be that we burn off more calories as a result!) Read anything by anyone with MS and the battle with daily fatigue features repeatedly. It’s like wading through treacle, and sometimes like wading through treacle with legs that REALLY hurt. The only other time I have experienced fatigue like this is when I was in the first trimester of pregnancy when it is a struggle to put one foot in front of another and it can strike at any time while you are doing anything. But in my case it is much, much worse when I’m not working.

So last week, when I didn’t have work to provide structure to my day, my body decided that the lack of adrenaline was a cue to make me lie on the sofa and watch programmes about wedding dresses. For two days. I felt miserable about all the things I wanted to do and couldn’t and anxious that I would never get up again! Eventually the wave of fatigue passed and this week has been better but each day needs to have a to-do list else the sofa will drag me back.

Which makes me reflect on the treatment of MS fatigue generally. Until recently there were two drugs licenced for MS fatigue – amantadine and modafinil. The latter was the most effective but, unfortunately, also has the most significant side effects so the licence has been withdrawn. Conversations with my neurologist about this drug tend to go:

Me: please can I have modafanil, I think it will help me get through junior doctor hours?
Him: No.
Me: Oh go on.
Him: No.

And repeat until he finally tells me to get lost (in the politest, most charming way.) The specialist nurse who had witnessed this last time then referred me for a fatigue management course. I didn’t go. I know they can be helpful to many people but I know about sleep hygiene and the principles of energy conservation but this course would say nothing to me about how to manage a 48 hour working week with running a home and raising two children. Afternoon naps weren’t going to be an option. Part-time work is currently not an option. And, at the moment, NOT going to work makes the fatigue worse. There is something to be said for a reason to get out of bed in the morning and keep going all day. So work will be my drug. A busy ward round will be my occupational therapy. And the next four weeks need filling so that I don’t lie back down and start thinking I will never get back up.

 

Love and best wishes.

(Disclaimer: contains soppy sentimentalism and may cause feelings of nausea)

An ex boyfriend of mine got married last week. He is the only ex boyfriend I am still in touch with and it was lovely to see his joy. It does feel a little odd to talk about “ex-boyfriends” when you have been with the same person for 17 years but it led me down a path of reminiscence of past relationships and, on the whole, I enjoyed the nostalgia. This has been extra fuelled by watching the first series of Girls and wincing at mistakes made and melodrama played out in my own history.
My daughter asked me how you choose a husband and why I chose her daddy. I talked a little about what not to choose and what not to accept, but only a little because she is only nine. I also talked about how not to treat people, drawing on my own guilt at adolescent meanness. I told her about my first, kind and gentle boyfriend who gave good cuddles and whose mum always fed me up, with both food and love; I didn’t explain how he and his family provided me with a refuge from troubled times at home and I didn’t expand on how I abandoned him to go and smoke and drink and listen to The Levellers in fields.
She knows the simplistic answer that I left the next one (the now newly wed) because he “kissed another girl.” I haven’t yet told her about the unsustainability of a relationship built on 17 year old intensity and over-emotionalism (mine) combined with fiery academic ambition (mine) against a desire to explore different ways of living and simply just be chilled (very much his.)
And she knows there was a mean one. She doesn’t know, may never know, how mean but I fear that one day she will also put up with rubbish because of “love” as many of us do in our early 20s.
“So how did you know Daddy was going to be our Daddy?” At 23 I didn’t know. I knew he liked my hair, liked me being clever and liked being around me. In our 20s he proved himself not completely terrified of helping me cope with some of the remaining damage from a troubled childhood and in our 30s has supported me through postnatal depression and our new unpredictable challenge of MS.
The other day a friend on the brink of engagement asked me “what is good about being married?” It was the middle of the night and I was even less eloquent than normal, but what I wanted to answer was: it’s not the marriage per se, it’s the overwhelming feeling that you are in it together and that, whatever happens, you won’t be fighting it on your own. We are stronger together because of knowing that the other one is always willing to glue back the fragile pieces. Our future is uncertain – the past three years has been about getting used to the idea that a big relapse is coming, and then trying to live life to the full despite that. And when I read about what I should be doing/eating/thinking to combat the MS I simply think I have what I need to fight today’s fight – great friends and family, fulfilling work, fantastic kids, daily little injections and my Mr C.

“Labels are for jam”

A hiatus in the blogging and the news is I feel amazing! Well, to be accurate, I felt amazing ten days ago but since then I have done four night shifts and come down with a rubbish cold/flu-type thing and have spent the day in bed shivering, sweating and feeling sorry for myself. But up until last week I felt fantastic. My fatigue has diminished and my legs are all sprightly and fully functioning. I have decluttered the house from top to bottom as it is on the market and finally got to the bottom of my email inbox. I even tackled the nemesis that was cannulation and seem to be getting better at it each day. So all was good until I received a letter from my new job telling me there was a “problem.”

It seems that full disclosure will get you a summons from the occupational health doctor to decide whether you are medically fit to practice. Despite reassurance from my own doctor, the medical director of the medical school and an invaluable gang of friends that it was all just a formality I had a mild panic that now, at this late stage, they would say “sorry, this career is not for you.” And when I panic I turn to the internet to find someone for whom it has all turned out OK. And when you turn to the MS pages you hear lots of stories of people forced from the workplace by unscrupulous bosses or by the progression of this largely mysterious illness. You also hear the word “disability” a great deal and my reaction to the word always takes me by surprise.

For a while I worked as a trainee paramedic. I LOVED driving ambulances but the paramedic life wasn’t for me: partly because I was  ill all the time (it was just before my first relapse), partly because I wanted to be able to wear anything but a green jumpsuit, and partly because I was not very good at the banter. I have friends who work in each of the emergency services and one thing that unites them all is their acceptance of “black humour” as a way of dealing with stressful and distressing situations. Me, as a liberal, lefty fan of political correctness was no good at this at all. Oddly though, it is something I seem to have dabbled with since diagnosis – I have “joked” that living right at the top of a hill will be good “when” I’m in a wheelchair as my husband will just have to take the brakes off and I’ll be at Sainsbury’s in no time. I have “quipped” about how lucky I am to technically be able to jump queues at Alton Towers and I am quick to “josh” about being a blue-badge holder when people try to get me to do things I am literally just too lazy to do. I’m not proud of these things and I don’t really understand why I say them because as soon as anyone implies I am disabled I get all affronted and cross.

It just seems like one step too far on the path to acceptance. I can accept the need for daily injections, I can accept the importance of regular exercise and trying to watch what I eat, I can accept that, on some days, I will need a stick, I can accept that, on many days, I need to remind the members of my household quite loudly that I can no longer hold three separate conversations at once (especially if one of them is about Minecraft), and I can accept (all be it massively begrudgingly) that I can no longer dance. But the thought of being told I could not even start doing the job I have now sacrificed so much for to train to do, and that the reason for that was my “disability” was too much. And my outraged rejection of the term was, in turn, a bit too much for the kind strangers on the internet who had offered me advice. “Not yet” came back the reply, “not yet.”

I have no real answers to this, no conclusions to be drawn, but I suspect it made me slightly ridiculous in my OH consultation yesterday as I loudly declared myself to be “very well,” despite the fact I have red eyes, a streaming nose and an unsightly cold sore which tell otherwise. I suspect, however, I was not the first person he has met struggling with definition – he spent a good ten minutes telling me that although he had to write that I was protected by the Disability Discrimination legislation he was in no way implying that I was disabled! He was a nice man. He cleared me as fully fit so now all I need to do is complete these last three weeks of medical school and it’s all systems go.

But tonight I am going to lounge around under a blanket getting Mr C to feed me biscuits and tea because I have upgraded this label of “cold” to “flu!” Maybe next year I will be further along the path and I will accept the flu jab they offer me….

 

Sticks and stones

April is a pretty significant month  around here. In April nine years ago I became a mum for the first time; in April three years ago I woke up with funny feelings in my arm and a vertigo which lasted for months – the first of my relapses. Last April I relapsed three days before my birthday and tried not to frighten my friends by being unable to walk properly at my birthday meal; and this April I have just turned forty. So far I like being forty – I was lucky enough to see lots of lovely friends at a lovely party (with lots of lovely presents!) We chose one where I could pick the music (poor friends!) but there would be no real dancing, thus avoiding my biggest MS regret of no longer being able to strut my stuff on a dance floor. And now I have a week off my elective to be with the littlies, doing our favourite thing of not getting out of our pyjamas until we really have to. I got my first choice job for next year, have already managed to get them to agree I can have Christmas day off and have booked up the calendar until work starts with lots of fun stuff. So life is good.

But (why is there so often a but?) the relapse that was due in the autumn and which I have been fighting off with Copaxone can be felt knocking at the door and the whole family is having to come to terms with the persistence of these rubbish leg symptoms. A few weeks ago I casually mentioned to my daughter that I might need to get a stick to use sometimes and the vehemence of her response took me completely by surprise. My daughter is a warm, funny, clever and determined little person blessed with her father’s sporting ability and her mother’s hot-headed stubbornness. She often shows great empathy and care for those less fortunate than herself and has a very healthy attitude towards people with disabilities (largely engendered by the paralympics!) So I was shocked and upset when she angrily told me that if I used a stick she would be too embarrassed to be seen with me. A week later (neither of us having mentioned it in the interim) she tearily told me that she didn’t want anything to change and she wanted me to be the “type of mummy who can just run down to the park” with her. After a cuddle and a joke about how I never go to the park anyway (watching children at the park features in my list of things I could happily never do again) I had a think about how confusing this must all be. Some days I am whizzing around as I always have and on other days I am limping and too tired to do much more than hand them both a screen and have a snooze. We are all learning how to deal with this and the lesson I am struggling to learn is the lesson of moderation. At the moment, when I have energy and my muscles aren’t in spasm I am raring to go – grabbing opportunities to see friends, occasionally getting out on the bike, hosting two birthday parties in a week and even orienteering (this weekend I fell down a rabbit hole whilst cutting across undergrowth trying to beat Mr C and my dad.) Yet the consequence of this is days where I am limping around or so fatigued that I can’t even speak to the children coherently, never mind play endless games of Cluedo and Harry Potter lego (and going to the park would be akin to climbing Everest.)

So what to do? The way I see it I have two choices: 1) Keep grabbing hold of the pockets of energy, exploiting the times when I can do things and accepting that for a few days afterwards I will struggle or 2) Pace myself – don’t do anything too strenuous, build in regular rest, live a calmer life so that there is less pain and fewer moments where I can’t find the words to explain the concept of infinity to a curious (and impatient) six year old. Those of you who know me personally know that the only option I will accept at the moment is number one. And that means a stick. Which is scary for all of us. In an attempt to make it less scary for our daughter I agreed that she could choose the colour and pattern of the stick. This was almost more terrifying for me as she has really quite awful taste and I could imagine her finding a leopard-print stick with added bling. Luckily we have agreed on a red one. I have my eye on a spotty one but it’s quite expensive so we’ll see how this one goes first. So if you see me with it please act as though it is a positive thing – firstly so that she can feel its no big deal and feel confident to brush it off if any of her friends mention it, but also because if you see me using it you know I’ve been doing something un-sensible recently and surely that’s worth celebrating!

 

Marathons, trampolines and grief cycling

10014633_10153952393770384_587693281_nMr C ran his second half marathon today (after swearing never to do another) and is talking about running a full one soon. He is bouncy, energetic and full of evangelical zeal about the physical and psychological benefits of this pastime which is entirely alien to me. Not that I haven’t been a bit spritely myself of late. In the dark post-Christmas days I spent protracted hours in the library sitting on my backside and fuelling the revision with popcorn, Twirls and the occasional pasty. I then emerged, blinking, into the February light ready to be a little more active (not least to try and shed the half stone I put on that month.) I trawled around London covering miles with the littlies, I have been out on my bike a couple of times and I even managed a decent time in my last orienteering effort (pushed on by my team mates – my littlest siblings who are as equally drawn to the comfort of a sofa as I am.) I am currently on my elective and working shifts which means I can do the school run some days and I am even getting home, to the top of my hill, without hyperventilating from the effort.

So yay me. Not quite the government’s recommended amount of weekly exercise, but as they have recently alienated me by telling me to give up sugar, my only remaining vice, I am choosing to pretend that walking up and down the stairs to return Moshi Monsters to the rightful home should make up the rest. Anyway, we bought a trampoline yesterday (ostensibly for the upcoming 9th birthday of my eldest, but maybe I could have a little bounce every day…)

Just one spanner in the works – since the trip to London my legs have been playing me up a little. It started with a painless stiffening which slowed me down and gave me a bit of a limp but it has progressed over the last week to stiffness, pain and weakness. I wake up unable to do more than shuffle. If I keep going it gets better but then starts to become really uncomfortable, so I sit down and then it seizes up again. It’s a picture that I’m sure is familiar to anyone who has injured a muscle but it is affecting my arms and legs and I have to admit to being a bit miserable about it.

So it’s time to add another drug, and a drug that takes me further away from the prospect of pretending this might all just go away. I hate taking medicines. I have tried a lot over the past couple of year and hated most of them. Amitryptilline kept me in bed; gabapentin made my entire arm go numb; amantadine gave me horrible dreams about family tragedy. But Copaxone is marvellous stuff so maybe it is worth adding another. Maybe baclofen will be the thing that pushes me out of denial permanently. Because I don’t seem to be doing this grief cycle thing by the book. Elisabeth Kubler-Ross might not recognise the faffing around I have been doing:

Denial – yep. I still spend a fair amount of most days here. Whatever the statistics say about those who are able to work full-time five years after diagnosis, I am (almost) fully convinced that my body will be able to cope with junior doctor hours no problem. And my colleagues and patients will find my occasional word-finding difficulties endearing rather than weird.

Anger – can’t really be bothered with this. I get angry about injustice and inequality and people on Question Time and people who post those Facebook statuses that pretend that everything was great in the ’70s. Otherwise I just like life. My legs might be going haywire but I still have books and Dr Pepper and lovely people and Googlebox in my life.

Bargaining – “please let me get through my exams without a relapse and I promise I will start taking those big Vitamin D tablets that make me nauseous.” I did take one this week.

Depression – I don’t think I feel this. My only experience of depression myself was after the birth of my son and I haven’t felt like that since. I feel the usual monthly miserableness and the occasional jolt of self-pity but, frankly, I live a pretty charmed life. My adult life has been one of happiness, opportunity, love and comfort. So far, even this stupid disease has touched me only lightly.

Acceptance – so maybe I do occasionally reach this end point in the cycle. It was acceptance that made me finally agree to inject myself every day and that decision has proved to be a wise one. And it is acceptance that has led me start taking this new drug. I want my legs to work. I want to be able to keep up with the nearly 9 year old on her bike. I “want” to be able to crouch on the floor to watch the reenactment of the hybrid film “the Return of the Jedi Moshi.” I want to bounce on that new trampoline.

But I don’t ever want to run a marathon.

Internet nonsense and good news

My daughter gave up chocolate for Lent. She is an enthusiastic Christian but only lasted two days before she converted it to “being nice to my brother.” I haven’t seen much evidence of this but she says its because I am too busy to notice (!) A friend of mine has given up Facebook for Lent and tells me this morning that she is sleeping better, getting so much more done and feels happier (if a little out of touch.) I sometimes envy people who have a religious faith- a bedrock of certainty on which to depend on in times of difficulty and anxiety – because when I get anxious I seem to turn to the internet to find “the answer” to whatever problem I am wrestling with. And this, inevitably, draws me to internet forums (fora being correct I know but for some reason I can’t bring myself to use it seriously!) The internet was 25 years old yesterday and for many of those years I have been a big fan. And for nine of those years I have been experiencing a love-hate relationship with internet chatrooms and advice boards. For a few years it was only ones about pregnancy, childbirth and raising small people. Firstly I was an enthusiastic member of babycentre and “met” a number of lovely women who are still now my friends and who have seen me through the ups and downs many people experience at this time (poorly babies, unexplained infertility, miscarriage, PND) but the nutters and trolls outweighed the good and it was time to leave. Mumsnet is a much more fun place – you share less so people don’t “know” you – but, again, I found myself getting drawn into late night arguments and debates with strangers about the most peculiar things which would consume my brain for days. One particular question I asked about whether my son should wear a cardigan to school when he started got 765 replies, some of which accused me of child abuse! It’s a great place, but not if you let yourself get too involved (for it at its best I recommend  penis cup!) I have mentioned before how I try to avoid the MS forums. I am conscious that its not really for me at this stage and that my particular brand of resolute upbeatness is irritating to those who are much less well so I don’t feel I really have anything to offer.

But the forums I have been remembering this week were the ones I used when I was applying for medical school and in the early years of my medical degree. Full of the naysayers and doom-mongers I remember clearly one person writing that “everyone who starts medical school married finishes medical school divorced.” Blimey! So it wasn’t just giving up a career I enjoyed and was good at, a pension, fantastic holidays and a decent salary – I was giving up my marriage as well. I chose not to mention this to Mr C and ploughed on regardless sharing the ups and downs of entrance exams, interviews and offers with strangers going through the same process. And I turned to many of those same strangers when, midway through my first year the combination of a poorly toddler and junior doctors telling me they “never, ever saw their children” made me march into the Dean’s office and announce I was leaving the course. Luckily for me he had seen this before, offered me a year out, and I went back much more committed but through this process the chatrooms told me that it was impossible to do well in medical school with small children, that my marriage was doomed (again), that I would never, ever again go to another sports day/school concert/parents evening etc etc. These groups, like the rest of the internet was tinged with the view that it is impossible to have a career and be a mother and partner and I trawled in vain to find people like me, who had done it.

Yet now it occurs to me that those women do exist, they just don’t have time to tell me about it on chatrooms because they are busy juggling, living life and working hard. And maybe this is why the positive stories after diagnosis of MS are not found on the internet because the people who are physically able to just get on with it are doing so and not up in the middle of the night trying to work out if the fuzzy feeling in their thumb is the start of a relapse and ending up terrified that life in a wheelchair is inevitable.

So, were the horror stories about medical school correct? It has been an intense time for many of us. Friends have lost loved ones, struggled with stress and depression and some relationships have broken down. I am not the only person to have been diagnosed with a potentially “life-limiting” condition whilst there. Personally, especially recently, life at home has been stressful as Mr C and the littlies “enjoyed” living with a wife and mum going through the rigours of final exams.

But I passed. And I made a show of myself by sobbing in a corridor when I passed. And people keep asking me if I am happy and I wonder if I am. I think I am mainly relieved. And I wonder if my lack of elation is due to five years of reading the internet about how rubbish it is to be a junior doctor. And how rubbish it is to have holes in my brain that *will* mean that the cognition I now enjoy will gradually diminish. But I am probably just tired (I am writing this just before going off to do a late shift on my elective because we don’t actually finish placements until June.) So, if anyone reading this will forgive me, I am just going to focus on the positive to give me a reboot into joy:

I passed medical school despite having very small children and having five relapses of MS in two years. I am currently well and have fantastic, loving people around me. I have done well at medical school so should, in theory, be able to choose the job I want. My children are healthy and happy and now the horror of revision is behind me I have space for books and cooking and crochet and friends again. I have a big birthday coming up and people to celebrate with. I am blessed and so will now be staying away from internet discussion boards where people may want to disavow me of my positivity and naievity (or at least until I need the Candy crush forum to tell me how to get through this tricky level…)