Duvet medicine

No blog for a while – a sign of a healthy few months. In fact, I have felt so well that a few weeks ago you would have found me trying to convince my friends that an “X-treme 10k” through water and mud next February was a great idea for my next challenge and that they should definitely do that with me.

I went to see the charming neurologist for my annual review and even asked him the question that had been buzzing at the edges of my consciousness for a while – “do I really have MS?” This question has been there since the beginning really, when a dismissive ENT Consultant told me and Mr C that the MRI changes she could see were probably “just from migraines” and I was suffering from nothing worse than “medical student hypochondria.” Dr Neurology dismissed this a few weeks later and gave me my diagnosis, and then after a year of too many symptoms, persuaded me that injections would make things much easier. And he was right – they did and relapses were further apart and milder. The change in regimen last year kept my symptoms dampened (although it made my migraines into killer migraines that make me think I am dying  – “junior doctor hypochondria” anyone? – so I am back to daily injections and waiting for that particular hell to pass.) Before my review I was flicking through all the brilliant literature the MS society produces about symptom control and life with MS and realised that I was doing VERY well. What if we had got it wrong? What if I’d made all this fuss for nothing? Worried everyone for nothing? So I asked the question … And he looked at me with the patient look he uses when I act slightly barmy, showed me my MRI scans again, pointed out the white spaces and then let it sink in. I had been worried that I would look like an idiot if I had been misdiagnosed, but I had also been clinging on to hope that we were all wrong. Oh well.

And then, as if to remind me, my body has decided that changing doses and weather and exhaustion and possibly a virus and whatever else is enough for it to be broken again. And it’s not a fun broken – it’s a can’t properly function at any level broken. The type of broken that might jeopardise my training, that means that I lie down to recover after going up the stairs, that means that I am emotionally battered by the trials and tribulations of the precious one starting secondary school. I want to stamp my feet – I have been so desperate for a few days off work , it’s not fair that I have to spend them limping around like a broken person. In the wonderful book  have just read Paul Kalanithi wrote about how unfair it seems to a person diagnosed with a horrible illness that you have to have it AND have it affect everything you do (or really want to do and can’t do.)

And yet, even reading that sentence back I know I am allowing self pity (and melodrama) to creep in. The chances are that I will feel a bit better soon. I will start emailing people about that bike ride I want to do, I shall get back to work and try to study for the scary exams, I will have a four-way conversation around the family dinner table without bursting into tears that I can’t keep up or remember the words or have to listen to them complete my sentences for me because they are keen to move onto the next topic and mummy is just being “too slow.”

And until then I will bask in my blessings – the friends who leave me presents in the porch for when I finally get out of bed, the tween who will do my hair because my arms hurt too much to lift, the boy who will try and try to hug me better, Mr C who is trying so hard not to look scared, the NHS who keeps giving me medicine, and my duvet which is so warm and comfortable and is my raft on which I will weather this storm.

Attention seeking behaviour 

As a keen (husband says obsessive) user of Facebook, I will often see posts about “invisible disabilities” which attempt to raise awareness of the difficulties people with a range of conditions face and ask for empathy and understanding. These are important messages and, inevitably, MS is always on the list.The nature of a relapsing-remitting condition is that much of the time a person looks totally well but may be struggling with a whole host of challenges that make day to day life tricky. In my case these can include fatigue, pins and needles and the trickly, slow decline in cognitive function that I am trying very hard not to obsess about (it’s entirely usual to forget your friends’ names isn’t it??) But I quite like the fact that I can keep these things invisible, only talking about them to those I want to and revealing things only to those I want to know. Sometimes the people I tell are almost strangers and I wonder afterwards about my own motivation, but the reveal is under my control.

But not always. Sometimes you get worse and people can tell. This week I fell over. It was a proper comedy fall, with legs akimbo and underwear revealed. I hurt myself, although luckily nothing is broken. And I fell because I tripped over my shoe. It is a silly ballet pump type thing that is a bit loose and I tripped. But I also tripped because I couldn’t really feel where my foot was at that moment. The fancy name for this is proprioception and it can be an issue for those of us with MS. You literally don’t know where bits of your body are in space. It can make walking down the stairs a bit of an issue (especially if you are idiotically using your phone at the same time…) It requires the wearing of sensible shoes which seems to be new area of denial.

The upshot of this week’s fall is a wrist splint and a bit of time wearing a sling. Because it happened at work, and because it wasn’t broken, the expectation was that I would stay at work. So I had to pootle around the wards with my sling on while everyone gasped and asked for an explanation. I tried to think up something comedic or dramatic but mainly just mumbled about what an old woman I was obviously becoming and smiled fixedly when a nurse told me “most times, when people fall, it means they are in the last year of life.” And I hated it – I hate the explanation that any physical evidence of illness necessitates. I hate the attention I get when I use my stick or slur my words. It is out of my control. It makes my invisible problem visible; takes the ownership from me and makes it public.

So for the time being I am happy that things stay mostly hidden. I will do my bit to raise awareness and I won’t hide who I am and what I face, but here’s hoping it can stay on my terms for longer.

A spoonful of self-pity

I am raging against the spoons!

Or at least the idea of having to ration my energy and activity to enable me to function at a steady level. Today is my third day of taking to my bed after the school run because even spending that “spoonworth” of energy means I need to have another nap. My pins and needles are back, my vision is blurry, my cognition is reduced and the word finding difficulties are comical (to everyone but me.) I can’t rouse myself to do the most basic of tasks and feel like I am moving through treacle just putting one foot in front of another.

In other words it feels like I am relapsing, but I don’t think that’s what it is. I’m simply burnt out because I STILL (four years post diagnosis) try to live at the intensity I did before. Last week I did two consecutive days at theme parks followed by a seventy hour working week (including four night shifts) PLUS a Little Mix concert (too much thrusting, not by me) and a meal out with friends. “Work hard and play hard” and all that. Except my body no longer wants to do anything “hard.” It would like to play only quietly and is not really sure it can cope with much work at all. I have my dream job and at the moment I am simply trying to survive until the end of each shift. I can’t really hold a decent conversation with anyone because I forget the words for things half way through sentences (or I say the wrong word and people think I’ve gone a bit barmy. The only people who don’t bat an eyelid at this are my children who are experts at interpreting “pass me that long stick” and knowing I mean the cucumber!)

So I gave in to self pity. I made a list of annoyances and dwelt on them. I posted an indulgent rant on Facebook. I had a little cry. I WANT IT ALL. FOOT STAMP, FOOT STAMP.

And then I came to my senses. And once again (I am like a stuck record) I realised how incredibly lucky I am, not only to have what I have but also to be not facing what others have to face. Quite apart from those in the wider world facing horror, hunger and hardship I have friends who face daily battles. They have poorly children or are sick themselves. They face huge uncertainty about the future for themselves and their families and they do it with dignity and stoicism. I am relatively well. The MRI I mentioned in the last post showed no further lesions. My MS is not deteriorating despite what I feel this week. And people are consistently lovely to me – warm, kind, encouraging, patient. Not one of you had pointed out the obvious – that I need to just take that final step in the cycle of grief and ACCEPT that things are now different. Life needs to be slower. Workloads need to be reduced. I need to be mindful of those bloody spoons.

So, I am going back to sleep. And when I wake up I will send the email asking for an adjustment to my working hours. And then we’ll see what life brings next…

‘Tis the season to be … scanning

Picture the scene a month ago: slightly harried “young” doctor with frizzy hair and a slight hint of wobble sits in a doctors’ waiting room thinking “please don’t let it be one of the disinterested rotational doctors, or even worse, one of my peers today!” I had come for my annual review wanting ANSWERS. Well, not really, I had come for my check up worried that someone was going to stop my medication. Surely I was doing too well to justify the NHS expense on these frivolous injections. I needed to see the top man in case I needed to plead my case.

So joy as the handsome, eccentric consultant calls my name in his pleasingly Mediterranean accent (I DO NOT have a tiny crush on this man, so there!) And the scene ran as thus:

He touched my arm and told me I looked well. He was lying but did so charmingly.

He introduced me to the medical student sitting in on the appointment who looked terrified. No doubt he was worried someone was going to ask him something tricky although, as previous posts have hinted at, MS is the medical school’s favourite neurological topic so he could have just recited “incontinence, disability, dementia” and all would have been well.

He allowed me to gabble on about how well things were going, and how great the children are, and how lovely it had been to see him waving on the street when I was “running” the half marathon.

And he allowed me to breezily say “so this medicine is GREAT. This year I have only had a couple of small relapses (funny legs in March, dizziness in November) and have had almost no time off work and haven’t needed any steroids or time in hospital etc etc etc”

And then he looked at me with a sad smile on his face. Here it comes I thought, I am ready to convince you without bursting into tears like the last time we had a conversation about medication and I failed to persuade you that narcolepsy medication would be IDEAL.

“You are not doing well my dear.”

(What? Did you not hear the bit about the marathon?!)

“You are too ill for my liking. If it carries on like this your ten year prognosis is poor.”

(Don’t be daft, I have promised my children that a wheelchair is out of the question.)

“The aim of treatment these days is no relapses at all. Anything less is sub-optimal.”

(and the bubble completely bursts, and I want to cry again, and I wish this medical student wasn’t looking at me quite so curiously.)

“So I’d like you to stop using the injections that have improved your life dramatically and start taking these tablets that have much worse side effects and… may make your heart stop.” (I may be paraphrasing this bit)

“But I don’t really want to … marathon … junior doctor hours … can we go back to you telling me I look radiant?”

He eventually talked me in to carrying on my hand-wringing with my specialist nurse (SHE was impressed by the marathon), and having blood tests and we have agreed that if my MRI shows any changes for the worse I will switch but if not I’m sticking with the injections.

So tomorrow, in the middle of what is proving to be a really lovely festive season, I am off to lie in the scanner for 90 minutes. This is almost exactly four years to the day since I had the MRI which led to my diagnosis. That experience was awful because I had constant pins and needles which meant it was really painful to stay completely still. Hopefully tomorrow the only discomfort will be my tight waistband from Christmas over-indulgence and a sense that I really should be vaguely studying for the exam I have in four days time.

And the lingering guilt about how much I actually cost to keep going. The new treatment would be quadruple the cost of the current one. And I have Dr Charming, and my own specialist nurse, and my GP at the end of the telephone .. .and the blue badge. I already cost the tax payers enough!

So for all of your financial sakes, keep your fingers crossed that tomorrow’s scan shows a brain with no more extra blank bits because my wish for 2016 is for EVERYTHING TO CARRY ON BEING BRILLIANT.

Wishing you all a lovely rest of holidays and hope the New Year also brings you peace and rest and stability and joy. xx

 

 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…