No news

It occurs to me that I am the worst blogger because I keep neglecting to post. This is because the blog is supposed to educate and inform about MS and MS is the least significant aspect of day-to-day life at the moment.

But then it occured to me that I could tell you (and more specifically those newly diagnosed and stumbling over this blog) that: that three years on, at the moment, I have neither headspace nor need to think about MS every day.

No room for it amongst work/children/Mr C/friends/playground politics/endless domestic admin/holidays/feeble attempts at running (yuck)/reading/drooling over cookbooks/mooning over dress catalogues/fannying around on the internet.

And no need because everything seems to be in relatively good working order.

Hope everyone else is finding things to help them relegate the rubbish to the bottom of the pile.

A pin and three needles

I can’t feel my finger. But the sun is shining and life is good. What a difference a bit of sunshine (vitamin D?) makes. A few months ago I was being bothered by periods of anxiety which I couldn’t quite pin down. Was it due to work (stressful and unpredictable and occasionally high pressure but no more so than I had anticipated;) the children (one has been diagnosed with a painful but hopefully resolving condition which has limited her usual activity, the other is showing signs of true Minecraft addiction which has required an “intervention;”) the day to day of life juggling long hours, a house, a family, being a good friend/sister/wife/mother? I couldn’t figure it out and despite dipping a toe in the pool of mindfulness (well, I bought one of those colouring books and did a jigsaw) it seemed to be getting worse. I could add hyperventilating in the bath terrified of my own mortality to my list of things to fill my time.

And then came an MS relapse … and oddly I felt better.

I haven’t had a relapse of my condition for over 18 months. The drugs are working. I have occasional periods where I am hit by the wall of fatigue, I get a run of sensory changes or my legs need a little help to move me around but I hadn’t been knocked off my feet. And I think the lack of relapse was worrying me. A small part of me was “worried” the doctors had made a mistake. What if I had made all this fuss, worried my family and even got a blue badge and there was nothing actually wrong with me? This probably sounds ridiculous but maybe there are some that can understand the anxiety of having possibly just got it wrong.

And then there was the genuine anxiety about what the next relapse would be like? It was long-overdue and maybe that meant it was going to be really really bad when it came. What if I lost the vision in both eyes? What if I couldn’t drive? What if I didn’t recover? The longer I was well the more worried I was getting about how unwell I might end up being. Not that I really acknowledged any of this. Maybe if I had opened the felt tips and started the colouring I would have got this insight but as it was I simply kept on going, burning the candle at both ends and wondering why I had suddenly become unable to cope properly.

And now the relapse has been and largely gone. My vision was mildly affected in one eye and the stick came back out. The migraines have been really bad this time but the fatigue has been better. I took one day off work and resisted hospital admission for IV steroids. My daughter wrote about my MS for the first time and it was reassuringly full of 9 year old self-obsession about what her friends might think rather than any concern about my health. She generously wrote that she was going to try and “put up” with me using my stick.

She didn’t have to put up with it for long. It’s folded away again now but while it was still in action I responded with characteristic mesaure and calm –  I entered myself into the local half marathon in the autumn. If you have read the blog before you’ll remember my vow to never, ever run. So my intention was to walk around and if I was still ill I would do it with my sticks and raise some money and awareness for the MS society. Then I realised how long that would take and that the only people left at the finish would be the council street sweepers so I have tested the recovering legs by doing the couch to 5k plan. And, annoyingly, the stories of exercise helping relieve symptoms is not actually a lie made up by gym-freaks.

There was a link on an MS group on facebook this week about an MS “sufferer” being “brave” by completing some feat of physical endurance. It garnered mixed responses from those who felt it gave a false impression of life for most people with MS, to those who felt it was important in showing that many people with MS are living a normal life and some are doing extraordinary things. I know my MS is not “normal” and that I am not representative of many, with my good response to the drugs and mild relapses so far, but I do think it’s important for those newly diagnosed to read about those who who are doing OK as well as those who are properly battling. Because it’s a real waste of life to be held captive by anxiety of what might be to come and what residual effects may be left. Especially if what you end up being left with is one numb finger and a pin and three needles bothering one hand.

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.