Mothering Sunday

Last week the final year medical students at our university got their exam results and this week they started “assistantships.” This is essentially a period of time where they do the work of a junior doctor under direct supervision. It’s been a great week; we have great enthusiastic, helpful students and I get to be a teacher again. And not only about medicine, I took the opportunity to drone on a little about the history of the British Mothering Sunday – a date in the Christian calendar where you are supposed to attend your “mother Church” and so a date where traditionally domestic servants would be given the day off to return to their families and attend the main Church in their area of birth. 

One of our students was telling me that his mother was excited for his visit home this weekend so she can celebrate her son, the new doctor. And as he was telling me I realised that for many people Mother’s Day is a straightforward day where they go and make a fuss of the woman who loved, supported and raised them.

But for some the day is not straightforward. For me it is not straightforward.

The Internet is not the place to talk about my mother, who is still alive but not a part of my life. Suffice to say that even when we were in contact there was never a verse in a Mother’s Day card that reflected the complexity and difficulty of our relationship. Spam emails about celebrating wonderful mothers are never really welcome here.

And of course I too am a mother. A mother that took a long time to get used to the role. For many years my lovely husband used to treat me to a weekend in a boutique hotel with a huge bath and wonderful food, all by myself, as a Mother’s Day gift. And I needed the escape. I love my children but when they were small I frequently found them overwhelming …  frustrating … exhausting. I wasn’t the patient, perfect mother I had hoped to be (although I now realise none of us are!) and, on occasion, I felt the urge to run away.

Of course they don’t stay young forever and now the great moments of motherhood come every day but I still deal with the bad moments badly. I don’t need to escape any more because life is less exhausting. It is also much more fun and now my gifts are home made and full of little person love. But the day will still be spent trying to keep the eldest in good humour and the youngest off the iPad. Mother’s Day, a day celebrating my role, doesn’t feel real. Perhaps it won’t ever feel that it’s about me while I am still someone’s child. Perhaps it won’t until they are young adults and coming home from university/work/travelling with a bunch of flowers and a hug for their daft old mum (hopefully successful, happy and above all, healthy. I can cope with my diagnosis, I couldn’t cope if they had inherited these dodgy genes.)

So it’s a complicated day for me. But I also know it’s even more complicated for others and so tomorrow I will be thinking also of my friends.

Thinking of my lovely friend who recently lost her mum to cancer. The funeral is on Monday and despite her strength and determination to get on with life I can’t imagine the pain of having to face her first Mother’s Day without her so soon.

Thinking of the wonderful woman who cared for my babies with love and patience at the local nursery who does this work with determination every day despite bearing the unutterable sadness of infertility.

Thinking of those who are both father and mother to their children without help or a break.

Thinking of those struggling hard to keep their relationship with a child a positive one despite all kinds of challenges – external, hormonal and medical.

Thinking of those who mourn for the loss of their children and those who miss their mums.

To all of you I send my top tips for coping with tricky days: a deep bubble bath, chocolate pudding with chocolate custard and an episode of trash TV. And a reminder that you are not alone in finding this day hard – I am thinking of you and send you strength to ignore the interflora adverts and unrealistic expectations.

Room for one more?

This week my baby turned seven. He’s the world’s best little boy, or at least he is to his parents and grandmother, not sure his sister is as convinced.) Every time I look at him my heart swells with love and pride; even last night when he was up through the night cutting a new tooth (at seven?!) and asking me to sing him back to sleep. We really are blessed with two fantastic children and these two children are keen for one more. At Christmas they asked me for a brother or sister as a present. My daughter is vaguely aware that this isn’t physically possible due to Daddy having an “operation” but she tells me that this is fine because we can adopt; as long as she gets a sister and not another little brother, and as long as it’s a baby as cute as her friend’s baby brother, but definitely a girl. I tell them plaintively that we all don’t get enough time to spend together as it is and how would they like it if we couldn’t do the things we like doing together (at the moment watching Cake Boss / playing UNO online depending on the child) because I might have to deal with a crying baby. This holds no sway. The tween fully believes that she is capable of solely looking after a child and therefore I don’t have anything to worry about.

Before we started our family I wanted four children. This is slightly odd because I really hated having siblings when I was a child. But I am a busy, bustling person and I wanted a busy, big, bustling family. And then we had one. And it was really, really hard. She cried a lot, I cried a lot, I missed work and so I went back early, selling all the baby things as she grew out of them because I didn’t want another.

But then people started having second babies and they were all so much easier than the first. Parents were more relaxed, babies were more chilled, maybe we could manage another. I was ambivalent but thought we could give it a try. And when it didn’t work all ambivalence disappeared and I pursued pregnancy with all the vigour that people know me for. I read, I charted, I consulted real doctors and online forum members and became fixated on the idea of getting pregnant again. My husband was largely peripheral. The goal was pregnancy, and I think I completely forgot about actually having another baby.

It was a long year of trying but eventually it worked and he was born healthy and well at home seven years ago. There was another pregnancy, this time not longed for (or even welcomed) but still mourned for when it didn’t proceed. So why not another?

Reasons to have another baby:

1) The children want one.

2) My husband really likes babies. He doesn’t want another one but he is really good with them nonetheless.

3) I am pretty good at giving birth and breastfeeding. For a woman who has never excelled at physical activity I made pretty light work of childbirth. My body just did what it was supposed to. I take not credit for this, it’s just how it was. I loved (most of) being pregnant, felt empowered by birth and really enjoyed breastfeeding.

4) These two are fab. I’m sure another one will be interesting/exhilarating/lovable etc etc.

and that’s where that list ends!

Reasons not to have another baby

1) Although my son fills my heart with love and joy now it wasn’t always thus. He was ill as a newborn and I was ill as his mother. He ended up being hospitalised and I might well also have done if it hadn’t been for excellent support from my husband, friends and a very intelligent health visitor. Having a second child just because it seemed like we should / I became obsessed with the challenge of becoming pregnant was not a good enough reason to sustain me through the early months of endless screaming and four years of broken sleep. These were barriers to love and I am ashamed that they were allowed to be, but I know that they were and I am that same person. I couldn’t risk that again.

2) I don’t like babies much even when they aren’t crying all day and all night. I’m not a massive fan of unpredictability and chaos.

3) I have just started this new career and although it is tricky managing it with two school-aged children I know it would be even harder with smaller people with earlier bedtimes and more physical needs.

4) Any child I have now has a greater risk of becoming a child carer. This is of course conjecture but one of the fears that woke me in the night when I was first diagnosed was the fear that the childhood of my children would be hampered by the need to care for me. My childhood was challenging, I swore that their’s would be easy. And so far so good. If my daughter’s biggest complaint is that I keep deliberately misplacing her cropped tops we are doing OK. I want them to reach adulthood without having to miss out on anything because of my condition.
Of all my reasons I know this is the least rational. I know people with MS who are much more affected than me and their children are amazing – balanced, compassionate, lively and living life to the full. I know this reason is based in melodramatic nonsense but, as I try to conquer all the fears I have about the future, this is the one that keeps re-emerging. I hope I can be ill and also look after two; I know I can’t be ill and raise three.

Reading this back it looks like I am really miserable about parenting but that’s not it at all. *I* found it hard, other people thrive on it. This decision is all about what I want which is selfish but we played the odds of ill children/PND/a tricky work-life balance and we won so why risk upsetting that balance?

So for us there’s no room for any more. There’s plenty of room for loving my nephew and my friend’s children and the ever increasing number of children of my cousins but we are done. Grateful and complete.

Happiness for the New Year

‘Tis the season to be jolly and time for all to reflect on a year gone by and a year to come. Time for this old thing to reflect on another decade gone by and to look forward to a not very special 41st birthday ahead. This time last year I was chained to my library desk frantic with anxiety about upcoming exams, today I had a lovely day caring for not too poorly patients and having time for a cup of tea. I walked up three flights of stairs to get to the tea and my legs did it without protest. Tomorrow I am off and am seeing family and friends for another festive feast. Life is good.

In fact life is really good. I recently read this blog post about the realisation that you are the happiest you have ever been. Although I don’t relate to her particular situation (I was most definitely not my most happy when my children were small – too essentially selfish, too unexplainedly ill to enjoy that particular phase.), in reading it I realised I was also in that place. India Knight’s new book, which I look forward to immensely, implores women of a certain age to embrace life and look for happiness. Earlier this year I took part in the 100 days of happiness project on Facebook and realised that happiness didn’t take much looking for.


But who would have thought it? Could my 35 year old self have imagined happiness if they had been told that they would have been diagnosed with a progressive neurological disease at the age of 37 and by the age of 40 would be the owner and occasional user of a walking stick and reliant on daily injections to function properly? Unlikely, but then perhaps I could have told me all of this:

1) You will qualify as a doctor and you will be OK at it (so far) and you will enjoy it despite the sometimes difficult hours. You will love the patient contact and will enjoy having colleagues again. Many of those colleagues will be truly lovely and some will become great friends.

2) Your children will flourish. Inevitably they will cause you ongoing worry (is one too bossy and stroppy, is one too eccentric and screen-addicted?) but they will make you super proud and give every day a purpose. Unlike the relentless physical grind that you found the early years you will enjoy them being school age very, very much. And that baby who never stopped crying has become a boy who never stops loving.

3) You will fall in love with your husband again. Not that you ever stopped, but the romantic love was paused while you both wrangled tiny people and you wrangled a change of career and relentless exam pressure. He will be steadfast, kind and supportive and when you emerge from the chaos you will find the man you fell in love with still there; still wanting to feast and laugh and dance and watch True Blood. 

4) You will continue to enjoy wonderful friendships. That group of old friends you just celebrated Christmas with will be the same group of friends you will celebrate this Christmas with and they are all doing well. They have had their own trials and tribulations and ill-health but they are all still here, and they all understand, love and support you exactly as you are. Plus you have also been lucky to meet many people in the past decade who also “get” you and whose friendship also enhances your life. Friendship is your life-blood and your friends should always know how importnat they are to you.

5) Family dynamics are a complex thing and this has always been an Achilles heel. But things will be less complex and you will be surrounded by love from a father who still cycles up mountains in his retirement and siblings who still put up with you despite knowing you best of all. Family life will also be enhanced as your cousins start having their own families and news of them brings you joy, especially the joy of this young man becoming two next week.

6) Your health will be OK so far. The drugs are working in the main.

So yes you will feel fat, and you will sometimes feel a bit “less abled”, and you will feel a bit guilty about being a full-time+ working mum, and you will feel stressed and you will still have MS. But above all, you will feel, and will be, the happiest you have ever been.


Happy New Year everyone.


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.