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.

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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 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.

“Labels are for jam”

A hiatus in the blogging and the news is I feel amazing! Well, to be accurate, I felt amazing ten days ago but since then I have done four night shifts and come down with a rubbish cold/flu-type thing and have spent the day in bed shivering, sweating and feeling sorry for myself. But up until last week I felt fantastic. My fatigue has diminished and my legs are all sprightly and fully functioning. I have decluttered the house from top to bottom as it is on the market and finally got to the bottom of my email inbox. I even tackled the nemesis that was cannulation and seem to be getting better at it each day. So all was good until I received a letter from my new job telling me there was a “problem.”

It seems that full disclosure will get you a summons from the occupational health doctor to decide whether you are medically fit to practice. Despite reassurance from my own doctor, the medical director of the medical school and an invaluable gang of friends that it was all just a formality I had a mild panic that now, at this late stage, they would say “sorry, this career is not for you.” And when I panic I turn to the internet to find someone for whom it has all turned out OK. And when you turn to the MS pages you hear lots of stories of people forced from the workplace by unscrupulous bosses or by the progression of this largely mysterious illness. You also hear the word “disability” a great deal and my reaction to the word always takes me by surprise.

For a while I worked as a trainee paramedic. I LOVED driving ambulances but the paramedic life wasn’t for me: partly because I was  ill all the time (it was just before my first relapse), partly because I wanted to be able to wear anything but a green jumpsuit, and partly because I was not very good at the banter. I have friends who work in each of the emergency services and one thing that unites them all is their acceptance of “black humour” as a way of dealing with stressful and distressing situations. Me, as a liberal, lefty fan of political correctness was no good at this at all. Oddly though, it is something I seem to have dabbled with since diagnosis – I have “joked” that living right at the top of a hill will be good “when” I’m in a wheelchair as my husband will just have to take the brakes off and I’ll be at Sainsbury’s in no time. I have “quipped” about how lucky I am to technically be able to jump queues at Alton Towers and I am quick to “josh” about being a blue-badge holder when people try to get me to do things I am literally just too lazy to do. I’m not proud of these things and I don’t really understand why I say them because as soon as anyone implies I am disabled I get all affronted and cross.

It just seems like one step too far on the path to acceptance. I can accept the need for daily injections, I can accept the importance of regular exercise and trying to watch what I eat, I can accept that, on some days, I will need a stick, I can accept that, on many days, I need to remind the members of my household quite loudly that I can no longer hold three separate conversations at once (especially if one of them is about Minecraft), and I can accept (all be it massively begrudgingly) that I can no longer dance. But the thought of being told I could not even start doing the job I have now sacrificed so much for to train to do, and that the reason for that was my “disability” was too much. And my outraged rejection of the term was, in turn, a bit too much for the kind strangers on the internet who had offered me advice. “Not yet” came back the reply, “not yet.”

I have no real answers to this, no conclusions to be drawn, but I suspect it made me slightly ridiculous in my OH consultation yesterday as I loudly declared myself to be “very well,” despite the fact I have red eyes, a streaming nose and an unsightly cold sore which tell otherwise. I suspect, however, I was not the first person he has met struggling with definition – he spent a good ten minutes telling me that although he had to write that I was protected by the Disability Discrimination legislation he was in no way implying that I was disabled! He was a nice man. He cleared me as fully fit so now all I need to do is complete these last three weeks of medical school and it’s all systems go.

But tonight I am going to lounge around under a blanket getting Mr C to feed me biscuits and tea because I have upgraded this label of “cold” to “flu!” Maybe next year I will be further along the path and I will accept the flu jab they offer me….