Work, life, balance

While the neighbours enjoy the sounds of the children bouncing on a trampoline and I await the arrival of curry and the start of Strictly I am musing fondly on the joy of family weekends. It must sound odd because we have been parents for nearly ten years, but the idea of a weekend is relatively new around here. When they were little and I was still teaching weekends were often just a more exhausting version of weekdays; small people don’t allow for hanging around reading the papers and pottering which is what I like best. Then, as a student, weekends were spent working (either teaching to try and contribute something to the food shopping bill, or studying) or feeling guilty about not studying. There was no “Friday feeling” because the work didn’t ever end. Now I am enjoying weekends of “nothing to do.” By which, of course, I mean cleaning, shopping, ferrying children around to different clubs, parties and activities, fitting in the Forrest Gump running tendencies of my husband etc etc. But there are also lie-ins, the weekend papers, seeing friends and time to play. There is a sense that I am working hard but that I get proper time off.
My dad will be pleased. He worries about my lack of “down time” and has long been (gently) urging me to try and reach more of a balance. And I have never been balanced (I blame my recent emotional lability on the MS but actually I’ve always been like this!) I have always worked too hard and taken on too much. I am a joiner and never like to say no to an invitation. There’s too much I want to do with each day. I want to be an expert cook, super singer, virtuoso knitter, an active campaigner, a “culture vulture.” Oh yes, and a good doctor/mum/partner/sister/friend. It isn’t always possible and the scales occasionally tip precariously.
And I don’t always balance. I spent a year falling over. I fell off chairs, fell over in supermarkets and toppled in operating theatres. I had an unusual initial presentation of MS – most people seem to have either sudden weakness or eye symptoms which end up with them being reviewed by the neurologist. I remember sitting with a fellow medical student looking up causes of vertigo and seeing MS right at the bottom of the list. Experienced medic friends joined me in dismissing it as a likely possibility, consultants in other specialities told me it definitely wasn’t MS. But an MS weeble I was. I worked hard, did my rehab exercises and can now do a Sainsbury’s shop whilst staying upright but the balance at home still sometimes alludes us. Amongst the issues are:
1) providing balance for a nine year old who is bright and ambitious but who is so busy with sporting activities that she lacks the time/motivation to do the academic work her mother is conditioned to value above all else.
2) allowing a six year old who has no “down time” in the week to spend as much time as he would want at the weekends on some form of screen. He is exhausted by full weeks of school/club/childcare necessitated by the working hours of his parents and fully relaxes with Minecraft or Temple Run. But getting him off the screen can be a battle and none of us have got this balance right.
3) In a world where we are hyper aware of the dangers of Internet bullying and stranger danger how do we equip our children with independence? How do I balance the desire to let my daughter to explore the world, walk home from school, enjoy what the Internet can offer her with the need to make her aware of why she always needs to be vigilant.
4) How can I balance the needs of a boy who tells me he is never cutting his hair and wants to look “different to every boy in my class,” with the anxieties of his grandmother who says his hair makes her weep ;)
5)After five years of putting my “fulfilment” first it’s Mr C’s time. His choice is not career change but proper running. He seems to have a talent for it and is chasing ever better PBs over ever longer distances. But is sure does take up a lot of time and we are ever more time poor.

However, these are essentially first world problems. And in one area we have a balance which has improved all of our lives. When I met my husband we quickly formed a modern partnership based on a 50-50 split of household responsibility, domestic chores and financial contribution. Children, part-time work and then years of study tipped this balance out of whack. He earned the money and I ran the home and family. He did almost the same amount of stuff but I “project managed” everyone – I did the admin, the sorting, the planning, the phone calls, the shopping, the cooking, the laundry; all the stuff it takes to run and home and family and I issued that family with list and instructions to keep it all going (lucky them!) Now I can no longer do it all because I am at the hospital for so many hours a day. Someone asked me this week if my husband “minded” and was surprised when I said he was pleased. Because now we have our balance back. We are both responsible for getting it all done and it feels more natural to share the load (and the costs.) I make fewer lists; he has started knowing when things need doing and who is supposed to be where. I even walk in to dinner on the table some evenings! So while the weeble phase is in remission long may it continue.

Dancing queen

Regular readers of these witterings will know that, once I started to come to terms with my diagnosis, the lasting sadness has been my inability to dance. I love dancing. From making up routines with my sister and school friends to pogo-ing in mosh pits in the early 1990s, from “salsasise” at my local leisure centre to energetic daft dancing with Mr C in indie nightclubs, from a youth dancing on bars and tables to a 30-odd year old dancing in the kitchen with my babies I have always loved dancing. And when I became unwell I couldn’t really do it anymore. My balance is off and my legs aren’t strong. Pins and needles and vertigo are the enemy of stuff-strutting. I have also been known to fall over if I try and that is a bit disconcerting for the children.
But this summer I have danced a little. I have danced at my aunt’s marriage blessing, I have danced with the tween, and, on Saturday, I danced at a charity ball. I have never been to a ball before but I squeezed into a dress, donned a new pair of Converse, drank a little too much cider and danced … a lot. I got home in the early hours and publicly raved about how wonderful I felt and how grateful I am to the Copaxone for “fixing me.”
And I am so grateful. But I’m not fixed. Since the weekend my legs have regressed to the state they were in when I bought my stick and all l want to do is sleep. I am a bit gutted which is probably a bit ridiculous. If this is as bad as it gets for now then it’s a manageable thing. I just need to moderate myself (never my strong point!) and remind myself of all the energy-management skills the MS nurses have taught me. And my resistance to this is yet another mini hurdle on this long road to full acceptance of what is happening to me.
And another mini hurdle is trying to find the balance between maintaining a normal life and accepting the help that is offered to me as a person with occasional disability. The public face of this is the use of my blue badge. I use my blue badge at work to park in the area closest to work. It don’t use “disabled” spaces but I do display my badge to be able to park there as part of the hospital policy. And when I do I feel people looking and judging. MS is one of a group of disorders that are sometimes called “invisible illnesses.” If you look online/on Facebook you will see a bounty of messages of frustration from people whose difficulties are not recognised because they don’t “look ill.” I am not the only person who has had people tell them they are “lucky” to have a blue badge. People wish for greater recognition of their symptoms and struggles from colleagues, acquaintances and wider society. And while I empathise it’s not a wish I share. I would quite like to keep my symptoms quiet, especially in this new job, or around my children (and when I told I am lucky I feel a flash of anger at the insensitivity of telling a person with a progressive disease how lucky they are!). But the point of this blog is to talk about how, with this luck, and support, and good medication, it is possible to keep living a full life with these symptoms and so reduce the fear felt by people at first diagnosis. And that you may have periods of time when you can’t do things but that does not inevitably mean you will NEVER do them again.
This Friday sees the start of the best thing about autumn and winter for this family – Strictly time. And so, with the appropriate level of cheesiness and with dancing shoes that are sequinned Converse rather than ruby red high heels I exhort everyone to “keep dancing” even if they have to do it sitting down.

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!