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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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