Peaks and troughs

This weekend I forgot the word for seatbelt. I could pretend that this “word-finding difficulty” is rare but it is actually a daily occurrence. And today finds me once more taking to my bed, eating Dairy Milk and trying to keep my head still due to the return of my old foe vertigo. And it’s not even a fun day in bed. I tried clearing emails but fell asleep; I tried reading but my weedy arms couldn’t hold my lovely Atkinson hardback and I fell asleep; I tried speaking to Mr C about family organisational logistics but that made me dizzy so I pretended to fall to sleep. And forgot the word for Bible.
But the thing is this is likely to be all my own fault. A few weeks ago I ran (euphemism) the half marathon. Despite a previous post on here declaring that I would never run I actually really enjoyed the day and didn’t make a show of myself. Given that I had loathed every minute of training I was surprised at how motivating it is to know that around each corner is someone cheering you on. But it was probably a daft thing to do. The loveliest of my lovely friends had tried to gently warn me that it might not be the greatest idea to push my body further than it had ever gone before (she has known me for 23 years and for most of those my fitness regime mainly involved smoking, then dancing like a loon, then more smoking.) Since the run I have worked the kind of hours you would expect a junior doctor to work (including nights and weekend), have had too many evenings out of the house, have wrestled with the the emotional exhaustion of negotiating with a headstrong pre-teen and juggled things whilst Mr C has been abroad. We topped this off with a mad dash around London last weekend to try and make full use of our Merlin passes (54,000 Nectar points well spent.) And now I’m in bed, Victorian consumptive like, fatigued by the effort of keeping on top of my CPD portfolio and other exhilarating online activities.

It’s safe to say I have not found the right balance. Although the drugs are keeping me going, these shut- downs where I am compelled to lie flat and reboot are coming around every few months. It’s annoying for me, disconcerting for the children and not fair to my colleagues. Those of us with chronic illness (ghastly phrase) are supposed to operate according to Spoon theory . We are supposed to recognise our limits and dish out our energy expenditure in spoonfuls or little parcels. The rest of the time we are supposed to rest to make sure there are enough spoonfuls left to allow us to meet our obligations. To prevent peaks and troughs we are supposed to be measured and careful.

And of all the irritations of this disease (the inarticulacy, the need to be ever close to the loo, the clumsiness necessitating frequent new phone screens) this is the one I resent most. Like a child I stamp my feet against being told that I can’t do everything I want to do. Tears of frustration are shed about not being allowed live life to its absolute fullest. I DON’T WANT to stay in bed! I want to work and sing and dance and play and talk and cook and read and laugh without having to decide which parcel of joy needs to be set aside for my “own good,” which spoonful of life has to be rationed. 

Instead of forgetting the words I need to have a coherent conversation with my husband, I wish I could instead reject the words like “careful” “sensible” and “steady.” I suspect they may need to enter my vocabulary more frequently. I’m just not ready.

(At the risk of sounding like my ten year old, I officially hate this: ) 

Don’t ask, don’t tell

  I have never liked the long summer holidays. As a child in a somewhat unpredictable world I spent the summers longing for the return to school, the place where I felt safe and confident, where things were predictable and ordered. As a young teacher the summers stretched too far ahead and whilst my friends and boyfriend went to work I slumped on the sofa watching daytime TV; as a new mum everything that kept me going through maternity leave simply stopped for the summer and I was never very good at playing with my babies without an imposed structure! These days summer is marked by the rest of my little family going away for a fortnight without me, and me never being entirely sure where my friends are. It unsettles me because, as much as I can picture myself as a free spirit, ready to wake each day without a plan and see where the world takes me, in actual fact I am a control-freak entirely driven by the love of routine.

And for 35 years that routine involved new beginnings every August/September. Buying new stationary to put in a new bag, with a new big diary to write in a clear and understandable timetable – these are the kind of things that make me very happy. And when I gave up teaching for medicine I didn’t really think through the implications of leaving them behind. Medical school should perhaps have helped my transition – we did get timetables but they were often late or inaccurate or just a bit baffling (and there was no place for my big bag of stationary and huge mummy filofax amongst these young people who seem to have mastered minimalist cool.)

As a junior doctor all hope of a calm and ordered life seems to have melted away. Every four months we rotate to a different area. This involves meeting a brand new set of colleagues, negotiating the politics of a new department, learning brand new systems and trying to get to grips with exactly where you need to be when and what people expect of you when you get there. This has been even more challenging for the routine-driven me this time as not only have I changed specialities but I have also changed hospitals. Everything is different, everything is moderately confusing and the mummy filofax is bursting with lists of people I need to phone to answers questions about rotas, annual leave, computer passwords, vaccinations and mandatory training course. Everyone else seems to be sanguine about this; I flap around mildly manic about it all.

It’s enough to unsettle me at any time but, with excellent timing, this move is happening during a relapse. A different kind of relapse – my limbs are all good but I can’t really see out of one eye and I am exhausted even before I get out of bed, never mind at the end of a twelve hour shift. I haven’t mentioned it to anyone at work because I’m determined (as ever) to push on through while I can. But I wish they knew, without me actually having to tell anyone. The move has had me reflecting once again about “disclosure” of my condition. We had to do one of those things where you introduce yourself to your new colleagues and say something interesting about yourself. For a split second I almost said “I have MS, its well-controlled and not currently a big deal. But sometimes I walk with a stick and I don’t want anyone to worry unduly about that.” I didn’t because I thought it might prove a bit of a downer, but I am left wishing I had a way of discussing MS in person the way I feel able to do here.

Last night I read a blog post written by an American who exhorted his fellow “MS-ers” not to tell anyone about their condition unless directly asked. He warned of discrimination and stolen opportunities and advised that people keep their symptoms hidden if they can. He advised “don’t ask, don’t tell,” which irritated me. And while I work in the protected British public sector I am not naive enough to not realise that people do face job insecurity and prejudice in Britain when they tell of their diagnosis. So why do I want people to know??

I suppose part of it is practical. I want to be able to sit down briefly on a long ward round without people looking at me quizzically. I want to be able to rock up with my stick if necessary and for people just to accept that sometimes that’s how things are for me. I don’t want special treatment, I don’t want people to make allowances, I just want to be able to quietly adapt things without any fuss. I have not yet worked out a way of telling people without it seeming like there is a fuss to be made.

And another part of it is the reason why I write this blog. I want people to know that having MS does not stop you living your life. We all experience the condition differently, but there are more people working with MS than there are people permanently using a wheelchair because of MS. This particular “sufferer” (as the media persists in describing anyone with MS) will be attempting to walk/gently jog 13 miles in six weeks time (note: it was a really bad idea for me to decide to enter myself for this, partly because of the relapse, but mainly because it turns out I really, really dislike running!)

I think what I would would really like is to be able to tell people in a natural way, at a convenient time, without there being a tumbleweed moment or without people tilting their head sympathetically and looking a bit sad. I would like to be open about it so I don’t have to talk about it very much and can just get on with meeting the challenge of learning how to care for both tiny babies and angry teenagers, and the added challenge of trying to contact someone to book off time for INSET days/concerts/parents’ evenings and everything else that comes with the start of a new term. Ooh, a new term, maybe I can just get my “fix” through my children. So I think I will buy them some new stationary, and a new bag each, and bore them silly by asking about their new timetabes when they go back to school in just over two weeks. Can’t wait…

End of term report

End of term reportS has had a generally good year with some promising aspects in her development at work and home. There are still some ongoing areas for development which are preventing her from being entirely satisfied with her progress to date.
Work: S has now gained full registration as a doctor. This will come as a surprise to her non-medic friends who thought she already had that. She has had a generally successful year, although we note that her enthusiasm levels have dipped occasionally. Surprisingly, she has shown no interest in doing any of the exams necessary to further her career. This is particularly surprising to her younger colleagues, many of whom are mightily ambitious and energetic! Nevertheless, her bosses seem happy with her progress, her admin skills remain top notch and the people she looks after seem to like her. She continues to worry that this is all smoke and mirrors and, at some point, someone will realise that she doesn’t know half the stuff she knew during her final exams only last year.

Overall: good progress
Parenting: S is finding parenting a sweet-natured seven year old to be thoroughly rewarding and enjoyable. She is adept at hugs, providing cheesecake, praising piano skills and making up silly voices for reading books aloud. She is less good at feigning interest in Minecraft and always listening when he talks about Star Wars/Harry Potter/pokemon/moshi monsters/multiple other all-consuming obsessions. Must try harder.

More challenging is parenting during the maelstrom of early-pubescent hormones that seem to have taken over her ten year old. Despite her best efforts S is currently not succeeding in pleasing said child and there is a great deal of stomping, shouting and sulking taking place on both sides. S needs to remember that she is the adult!

Overall: needs further development
Marriage: There has been a mutual decision to never again go on a camping trip together. 

Overall: happy state achieved despite daily stresses and occasional grumps.

General life: S has not effectively got on top of her domestic to do list. Her living room curtains are still hemmed with safety pins and the decluttering project is still not in progress. Despite the plethora of cookbooks she owns she does seem to serve an awful lot of pasta and her front garden desperately needs weeding. S also continues to occasionally clumsily blunder her way through interactions with other people but is blessed with loyal, tolerant and life-affirming friends who luckily don’t mind if she is sometimes a numpty. She needs to develop more emotional resilience although her lovely friend J says that she also needs to remind people that she doesn’t wear a sticker saying “please tell me exactly what you think of me at all time” because actually she is a bit of a delicate flower. She has been attempting to list on Facebook things to be grateful for each day with varying success. One day she could only list being grateful for soup. Her friends would be more grateful if she posted less on Facebook.

Overall: work in progress

Health: S is the proud owner of a shiny silver stick. She covets a spotty one. Generally she has had a good year health-wise and has astounded her husband by actually being able to run (read plod ungainly.) She is entered for the half marathon which is ridiculous but she can’t drop out now because she is raising money for the NSPCC (running for the MS Society seemed a little self-serving!)
But she is bone-tired and hasn’t been feeling great recently. For three months now her pesky migraines have returned to plague her and scupper her attempts to be ever cheery. This has meant multiple trips to the kindly GPs who, at one point, offered her dementia screening because it was offered to everyone with MS L The new tablets seem to be working but it’s tentative progress. Even more irritating is that she can’t see properly out of one eye and that the fatigue is, at times, overwhelming. Having to sleep during the day affects her mood as she feels like she is unable to do any of the things she needs to to improve all the things listed above. Although the ten year old likes a mummy who lies on the sofa watching TLC because that’s all she wants to do as well – so maybe that’s a bonus.
General summary: S tries hard but is showing signs of really needing a holiday. Unfortunately she doesn’t have one planned so instead she might just treat herself to an end-of-term cider, watch rubbish TV with one eye and pretend it is mindful, ignore the curtains, and maybe have another nap…

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.