Sticks and stones

April is a pretty significant month  around here. In April nine years ago I became a mum for the first time; in April three years ago I woke up with funny feelings in my arm and a vertigo which lasted for months – the first of my relapses. Last April I relapsed three days before my birthday and tried not to frighten my friends by being unable to walk properly at my birthday meal; and this April I have just turned forty. So far I like being forty – I was lucky enough to see lots of lovely friends at a lovely party (with lots of lovely presents!) We chose one where I could pick the music (poor friends!) but there would be no real dancing, thus avoiding my biggest MS regret of no longer being able to strut my stuff on a dance floor. And now I have a week off my elective to be with the littlies, doing our favourite thing of not getting out of our pyjamas until we really have to. I got my first choice job for next year, have already managed to get them to agree I can have Christmas day off and have booked up the calendar until work starts with lots of fun stuff. So life is good.

But (why is there so often a but?) the relapse that was due in the autumn and which I have been fighting off with Copaxone can be felt knocking at the door and the whole family is having to come to terms with the persistence of these rubbish leg symptoms. A few weeks ago I casually mentioned to my daughter that I might need to get a stick to use sometimes and the vehemence of her response took me completely by surprise. My daughter is a warm, funny, clever and determined little person blessed with her father’s sporting ability and her mother’s hot-headed stubbornness. She often shows great empathy and care for those less fortunate than herself and has a very healthy attitude towards people with disabilities (largely engendered by the paralympics!) So I was shocked and upset when she angrily told me that if I used a stick she would be too embarrassed to be seen with me. A week later (neither of us having mentioned it in the interim) she tearily told me that she didn’t want anything to change and she wanted me to be the “type of mummy who can just run down to the park” with her. After a cuddle and a joke about how I never go to the park anyway (watching children at the park features in my list of things I could happily never do again) I had a think about how confusing this must all be. Some days I am whizzing around as I always have and on other days I am limping and too tired to do much more than hand them both a screen and have a snooze. We are all learning how to deal with this and the lesson I am struggling to learn is the lesson of moderation. At the moment, when I have energy and my muscles aren’t in spasm I am raring to go – grabbing opportunities to see friends, occasionally getting out on the bike, hosting two birthday parties in a week and even orienteering (this weekend I fell down a rabbit hole whilst cutting across undergrowth trying to beat Mr C and my dad.) Yet the consequence of this is days where I am limping around or so fatigued that I can’t even speak to the children coherently, never mind play endless games of Cluedo and Harry Potter lego (and going to the park would be akin to climbing Everest.)

So what to do? The way I see it I have two choices: 1) Keep grabbing hold of the pockets of energy, exploiting the times when I can do things and accepting that for a few days afterwards I will struggle or 2) Pace myself – don’t do anything too strenuous, build in regular rest, live a calmer life so that there is less pain and fewer moments where I can’t find the words to explain the concept of infinity to a curious (and impatient) six year old. Those of you who know me personally know that the only option I will accept at the moment is number one. And that means a stick. Which is scary for all of us. In an attempt to make it less scary for our daughter I agreed that she could choose the colour and pattern of the stick. This was almost more terrifying for me as she has really quite awful taste and I could imagine her finding a leopard-print stick with added bling. Luckily we have agreed on a red one. I have my eye on a spotty one but it’s quite expensive so we’ll see how this one goes first. So if you see me with it please act as though it is a positive thing – firstly so that she can feel its no big deal and feel confident to brush it off if any of her friends mention it, but also because if you see me using it you know I’ve been doing something un-sensible recently and surely that’s worth celebrating!

 

Marathons, trampolines and grief cycling

10014633_10153952393770384_587693281_nMr C ran his second half marathon today (after swearing never to do another) and is talking about running a full one soon. He is bouncy, energetic and full of evangelical zeal about the physical and psychological benefits of this pastime which is entirely alien to me. Not that I haven’t been a bit spritely myself of late. In the dark post-Christmas days I spent protracted hours in the library sitting on my backside and fuelling the revision with popcorn, Twirls and the occasional pasty. I then emerged, blinking, into the February light ready to be a little more active (not least to try and shed the half stone I put on that month.) I trawled around London covering miles with the littlies, I have been out on my bike a couple of times and I even managed a decent time in my last orienteering effort (pushed on by my team mates – my littlest siblings who are as equally drawn to the comfort of a sofa as I am.) I am currently on my elective and working shifts which means I can do the school run some days and I am even getting home, to the top of my hill, without hyperventilating from the effort.

So yay me. Not quite the government’s recommended amount of weekly exercise, but as they have recently alienated me by telling me to give up sugar, my only remaining vice, I am choosing to pretend that walking up and down the stairs to return Moshi Monsters to the rightful home should make up the rest. Anyway, we bought a trampoline yesterday (ostensibly for the upcoming 9th birthday of my eldest, but maybe I could have a little bounce every day…)

Just one spanner in the works – since the trip to London my legs have been playing me up a little. It started with a painless stiffening which slowed me down and gave me a bit of a limp but it has progressed over the last week to stiffness, pain and weakness. I wake up unable to do more than shuffle. If I keep going it gets better but then starts to become really uncomfortable, so I sit down and then it seizes up again. It’s a picture that I’m sure is familiar to anyone who has injured a muscle but it is affecting my arms and legs and I have to admit to being a bit miserable about it.

So it’s time to add another drug, and a drug that takes me further away from the prospect of pretending this might all just go away. I hate taking medicines. I have tried a lot over the past couple of year and hated most of them. Amitryptilline kept me in bed; gabapentin made my entire arm go numb; amantadine gave me horrible dreams about family tragedy. But Copaxone is marvellous stuff so maybe it is worth adding another. Maybe baclofen will be the thing that pushes me out of denial permanently. Because I don’t seem to be doing this grief cycle thing by the book. Elisabeth Kubler-Ross might not recognise the faffing around I have been doing:

Denial – yep. I still spend a fair amount of most days here. Whatever the statistics say about those who are able to work full-time five years after diagnosis, I am (almost) fully convinced that my body will be able to cope with junior doctor hours no problem. And my colleagues and patients will find my occasional word-finding difficulties endearing rather than weird.

Anger – can’t really be bothered with this. I get angry about injustice and inequality and people on Question Time and people who post those Facebook statuses that pretend that everything was great in the ’70s. Otherwise I just like life. My legs might be going haywire but I still have books and Dr Pepper and lovely people and Googlebox in my life.

Bargaining – “please let me get through my exams without a relapse and I promise I will start taking those big Vitamin D tablets that make me nauseous.” I did take one this week.

Depression – I don’t think I feel this. My only experience of depression myself was after the birth of my son and I haven’t felt like that since. I feel the usual monthly miserableness and the occasional jolt of self-pity but, frankly, I live a pretty charmed life. My adult life has been one of happiness, opportunity, love and comfort. So far, even this stupid disease has touched me only lightly.

Acceptance – so maybe I do occasionally reach this end point in the cycle. It was acceptance that made me finally agree to inject myself every day and that decision has proved to be a wise one. And it is acceptance that has led me start taking this new drug. I want my legs to work. I want to be able to keep up with the nearly 9 year old on her bike. I “want” to be able to crouch on the floor to watch the reenactment of the hybrid film “the Return of the Jedi Moshi.” I want to bounce on that new trampoline.

But I don’t ever want to run a marathon.

Internet nonsense and good news

My daughter gave up chocolate for Lent. She is an enthusiastic Christian but only lasted two days before she converted it to “being nice to my brother.” I haven’t seen much evidence of this but she says its because I am too busy to notice (!) A friend of mine has given up Facebook for Lent and tells me this morning that she is sleeping better, getting so much more done and feels happier (if a little out of touch.) I sometimes envy people who have a religious faith- a bedrock of certainty on which to depend on in times of difficulty and anxiety – because when I get anxious I seem to turn to the internet to find “the answer” to whatever problem I am wrestling with. And this, inevitably, draws me to internet forums (fora being correct I know but for some reason I can’t bring myself to use it seriously!) The internet was 25 years old yesterday and for many of those years I have been a big fan. And for nine of those years I have been experiencing a love-hate relationship with internet chatrooms and advice boards. For a few years it was only ones about pregnancy, childbirth and raising small people. Firstly I was an enthusiastic member of babycentre and “met” a number of lovely women who are still now my friends and who have seen me through the ups and downs many people experience at this time (poorly babies, unexplained infertility, miscarriage, PND) but the nutters and trolls outweighed the good and it was time to leave. Mumsnet is a much more fun place – you share less so people don’t “know” you – but, again, I found myself getting drawn into late night arguments and debates with strangers about the most peculiar things which would consume my brain for days. One particular question I asked about whether my son should wear a cardigan to school when he started got 765 replies, some of which accused me of child abuse! It’s a great place, but not if you let yourself get too involved (for it at its best I recommend  penis cup!) I have mentioned before how I try to avoid the MS forums. I am conscious that its not really for me at this stage and that my particular brand of resolute upbeatness is irritating to those who are much less well so I don’t feel I really have anything to offer.

But the forums I have been remembering this week were the ones I used when I was applying for medical school and in the early years of my medical degree. Full of the naysayers and doom-mongers I remember clearly one person writing that “everyone who starts medical school married finishes medical school divorced.” Blimey! So it wasn’t just giving up a career I enjoyed and was good at, a pension, fantastic holidays and a decent salary – I was giving up my marriage as well. I chose not to mention this to Mr C and ploughed on regardless sharing the ups and downs of entrance exams, interviews and offers with strangers going through the same process. And I turned to many of those same strangers when, midway through my first year the combination of a poorly toddler and junior doctors telling me they “never, ever saw their children” made me march into the Dean’s office and announce I was leaving the course. Luckily for me he had seen this before, offered me a year out, and I went back much more committed but through this process the chatrooms told me that it was impossible to do well in medical school with small children, that my marriage was doomed (again), that I would never, ever again go to another sports day/school concert/parents evening etc etc. These groups, like the rest of the internet was tinged with the view that it is impossible to have a career and be a mother and partner and I trawled in vain to find people like me, who had done it.

Yet now it occurs to me that those women do exist, they just don’t have time to tell me about it on chatrooms because they are busy juggling, living life and working hard. And maybe this is why the positive stories after diagnosis of MS are not found on the internet because the people who are physically able to just get on with it are doing so and not up in the middle of the night trying to work out if the fuzzy feeling in their thumb is the start of a relapse and ending up terrified that life in a wheelchair is inevitable.

So, were the horror stories about medical school correct? It has been an intense time for many of us. Friends have lost loved ones, struggled with stress and depression and some relationships have broken down. I am not the only person to have been diagnosed with a potentially “life-limiting” condition whilst there. Personally, especially recently, life at home has been stressful as Mr C and the littlies “enjoyed” living with a wife and mum going through the rigours of final exams.

But I passed. And I made a show of myself by sobbing in a corridor when I passed. And people keep asking me if I am happy and I wonder if I am. I think I am mainly relieved. And I wonder if my lack of elation is due to five years of reading the internet about how rubbish it is to be a junior doctor. And how rubbish it is to have holes in my brain that *will* mean that the cognition I now enjoy will gradually diminish. But I am probably just tired (I am writing this just before going off to do a late shift on my elective because we don’t actually finish placements until June.) So, if anyone reading this will forgive me, I am just going to focus on the positive to give me a reboot into joy:

I passed medical school despite having very small children and having five relapses of MS in two years. I am currently well and have fantastic, loving people around me. I have done well at medical school so should, in theory, be able to choose the job I want. My children are healthy and happy and now the horror of revision is behind me I have space for books and cooking and crochet and friends again. I have a big birthday coming up and people to celebrate with. I am blessed and so will now be staying away from internet discussion boards where people may want to disavow me of my positivity and naievity (or at least until I need the Candy crush forum to tell me how to get through this tricky level…)

 

I don’t know how she does it.

Six years ago today I handed in my PhD thesis with an emotional flourish only found in those who are 38 weeks pregnant. With a toddler at home and still teaching full-time I was determined to get it done before the new baby arrived and indeed I did. As soon as I’d finished, after finishing with the weeping, I swore blind to my husband that I was done with studying … Since then I have done a specialist diploma in adult education and am almost ready to sit my medical school finals and I am WELL AND TRULY FED UP WITH STUDYING.

The library is now full of my colleagues looking wide-eyed and anxious, or anxiously reassuring each other that there is nothing to be anxious about. They arrive first thing and leave last thing at night, or they don’t leave at all as the libraries are open 24 hours. This frenzy of studying and revision will reach fever pitch over the next couple of weeks and some of them will look at me and the smattering of other parents on the course and gasp “I don’t know how you manage it … with children!”

Because of course it is different. I can’t work for hours on end, I work until the clock says I need to pick them up to take them somewhere to do something, or feed them, or just spend some time with them. This can be frustrating when there is lots of work to do and I want to finish a train of thought, but it does make you very disciplined. I work smart because I have to. I also cut corners because I have to; I hope I will be a good doctor but I won’t be a doctor with a detailed understanding of some of the more difficult scientific concepts or a memory of exactly how all these drugs work because I have to skip over them. I will cram knowledge into my head for the exams and hope I retain the important stuff for afterwards but I know some will fall out instantly, or get pushed out by the fact that I simply choose to give home more of my attention.

Because however much I want to be a doctor I want to be a good mum more. I want my children to grow up secure in their parents’ love for them and for each other, to be happy, honest and healthy and to develop into balanced, fulfilled adults. Of course I also want them to excel in all that they do and be kind to each other at all times but this is obviously a work in progress!

But I have never felt that I needed to stop working to do this. What I need to do is be very good at loving them, very good at multi-tasking and ridiculously organised. And I am. And it is exhausting. But it works, and it works because I realise that to “have it all” you have to cut corners at home as well as at work. So my house is not very tidy, and sometimes my kids don’t eat enough fruit, and my son has occasionally slipped a 12-rated film under my radar. And sometimes I am not the parent I want to be – I am the shouty, irrational woman I swore I would never be and although I always say sorry, I wish it wouldn’t happen. But it doesn’t happen often and I have an excellent “wing-man” to keep me on the straight and narrow and to remind me that the children don’t need it to be perfect, they just need it to be done with love.

There is a scene in the book “I Don’t Know How She Does It” by Allison Pearson where the main character, a working mother, is up at midnight bashing shop bought mince pies with a rolling pin to make them look homemade. She is doing this to impress upon the “schoolgate mums” that she can do “it all” – work full time and be a “proper” hands on mother. The scene makes me smile but it is not something I recognise. Don’t get me wrong, the stream of requests from school for cakes/donations for tombolas/outfits can seem relentless but frankly the children don’t seem to care if my efforts are sometimes a bit crap as long as I remember. Shop bought is often fine by them. Shop bought is the only option in their eyes if it involves a packed lunch – homemade bread is apparently a social disaster when you are eight. I have only forgotten once and luckily the lovely teacher covered my tracks. So there’s not much point knocking myself out to bake the best cake or sew the best Victorian costume, just as there is no point me missing a family dinner time to learn about the finer points of immunology.

At the moment we mostly get the balance right but of course there is the nagging doubt about the future balance. Fatigue is the biggest threat at the moment because fatigue makes me foggy and grumpy and neither of those help with the necessary hyper-drive. The fatigue of MS is overwhelming when it strikes, but a combination of Capaxone, high dose Vitamin D and Vitamin B complex seems to be helping. And anyone with small children lives life with fatigue – when I started medical school my son was still waking four or five times a night, a legacy of neonatal illness, and I still managed to go in every day and learn some stuff. So although it’s not fun, it’s doable. But what if, when, it gets worse. Reading about rehabilitation and disability this week I learnt that the average MS “patient” progresses from diagnosis to disability in 5-8 years. But that 31% are only “mildly disabled.” When I started this course, full of optimism about healing the sick, and ignoring the look of panic on my husband’s eyes about the financial implications of giving up paid work for years, I didn’t think that my hope at the end of it would be for “mild disability,” but there we go!

So, in the spirit of good parenting I have a decision to make about my children. Recent information from the MS trust http://www.mstrust.org.uk/information/opendoor/articles/1311_10_11.jsp suggests my children have a 1/40 chance of developing MS, a chance that “might” be reduced if they take high dose Vitamin D too. But there are no trials, no evidence about potential harm and no real guidance so what to do? I actually have no idea so I shall add pondering about this to my list of procrastination techniques (currently includes Candy Crush, True Blood, detective fiction and cleaning out cupboards) over the next month. Would be interesting to hear what people think…

“Hysterical lady pains”

This time last week I was waiting for an ambulance to take me to the hospital. Completely un MS-related the general consensus was that I had appendicitis. It was all quite inconvenient because Mr C was away and I had plans. In the spirit of someone who has given birth without drugs (not by choice) I had already taken my children on their first demonstration, ferried them around to parties and Wagamamas AND “hosted” a Strictly party in a fair amount of pain before finally giving in and getting myself seen to, and thus learning about medicine from the patient’s perspective.

Not that I haven’t been a “patient” before of course. And the whole experience reminded me of the big fear I had when I was first ill – the fear of being “medically unexplained.” For those of you not familiar with this term, it is the label given to people whose pain and symptoms are not explainable by current medical testing or understanding. It is the name sometimes given to conditions like ME, fibromyalgia, IBS – conditions that doctors can’t explain scientifically, and some doctors don’t even accept as real. “Medically unexplained” is used by some as shorthand for “possibly all in their head.” My biggest fear before my MRI results was a diagnosis of ME because, however much more seriously it is taken now than twenty years ago, it still comes attached with a lot of assumptions about the type of person who gets a condition like ME and thus how they are treated by the medical establishment and wider society. And I didn’t want people making those assumptions about me – if there’s one thing I like, its being taken seriously!

I may have mentioned that my neurologist is eccentric to say the least – kind, very patient with my repeated (and denied) requests for modafinil, straight-talking and off-the-wall. One comment from my “diagnosis” appointment with him was him telling me “twenty years ago we would have said your symptoms are caused by you being an hysterical woman … now we can use MRI to see there is actually something real wrong with you.” So I can be grateful for the white patches in my brain! A quick peek at the MS fora reveals hundreds of people in what they call “limbo-land” – symptomatic but waiting for a definite diagnosis, either because they have only had one relapse (you need two really for a MS label) or because their MRI doesn’t show the characteristic changes. This uncertainty must be frustrating, frightening and above all, difficult to explain to those around them and therefore for them to get the support and empathy they need. The initials MS mean that I don’t really ever have to explain further why I am struggling to walk some days, or why I am sometimes too tired to go out with friends. Without the label I would have to waste time worrying that people might think that what I have isn’t something “real.”

And that’s the worry that came back last week as the doctors argued whether it was my appendix (all the physical symptoms but normal blood tests), or ovaries, or something else. In the end the pain subsided and after a couple of days I was home again and back to normal (with a doctor’s warning that my appendix is likely to play up again soon and THEN they will take it out – here’s hoping its not Christmas day.) Three separate medical people have since told me that up to 40% of people admitted into hospital with pains like mine are “medically unexplained” and that most of those are assumed to be “women who are a bit needy.” This is taught as fact to medical students and junior doctors by the type of doctors who are only really interested if there is something to cut out. And undoubtedly that may be true of some – children feel emotional upset in their tunnies, why wouldn’t adults? But being on the receiving end of that assumption is horrendous. I could have told them that I was generally feeling physically better than I have for two years (hurray for Copaxone), that I feel relatively positive about the exams, am excited about qualifying and loving life outside of work so therefore could they please just stop fobbing me off, fix whatever it was and let me get home for the spaghetti putanesca I was dreaming off whilst they had kept me nil-by-mouth for 48 hours? I didn’t tell them any of this because frankly they wouldn’t have cared and because I have the rather infuriating habit of bursting into tears whenever I get fired up, thus completely undermining my own credibility. So I came home, apologised to all the fab people who helped with the children and getting my husband home, made the spaghetti putanesca, and spared an extra thought for all of those who suffer pain and disability daily and who don’t have an answer as to why. Because with an explanation comes hope of a cure, or at least the chance to slow progression or live more easily with the symptoms.

PS A number of people have asked me this week what I thought of the Jack Osbourne appeal for the MS Society on BBC1 last Sunday. My general view is that if you were a newly-diagnosed person or family member of such it would have been absolutely terrifying to watch because it highlighted how shit it all could be. But I suppose that’s the point of an appeal – the MS Society and MS Trust provide so much in the way of support, education and medical research that every donation helps each one of us every day. In the light of that perhaps your Christmas list could include one of these.

I haven’t got time for this!

A blog forum I am linked to asked for people to blog about their to do lists and this seemed like an opportune moment to empty it all from my head in an attempt to order an increasingly fuzzy mind. There now follows a number of reasons why I sometimes don’t have space in my head to remember the correct word for the fridge. (Warning: if middle-class women bemoaning their first world problems irritates you you may want to skip this one!)

My to do list (by category, I am a keen filer).

Children:
Raise them to be kind, independent-thinking, empathetic and fun. Try to stop shouting as much and develop “Mother Earth” style patience. Try to stop being so demanding. Keep on top of all the school “stuff” so as to not forget money/outfits/donations/trips/events. Try to remember the arrangements for all the after school activities they do 1) because they love them 2) because I am trying to teach them that it’s not just about academic achievement (whilst undermining this constantly by tiger mother behaviour during homework sessions.)

Specific to Girl: perfect various celebrity hairstyling techniques. Listen to lots of clarinet practice. Help her with time-management as she is massively over-scheduled and fitting in homework/practice/relaxation is a challenge. Keep resisting the clamour for another after school activity. Keep up to date with new children’s books so she has access to the best stuff around. Remember which member of One Direction is which.

Specific to boy: lots of reading practice for this emerging reader. Try not to panic about screen time. Try to remember all the rules of chess because chess has replaced screen time as his latest obsession. Keep listening at all times because he moves from Harry Potter to Star Wars to Strictly Come Dancing to his school topic with alarming speed and I am frequently left behind. Try to get out of him the names of the people he wants to invite to his birthday party. Remember the names of the Moshi monsters. Try not to panic about the occasional burst of stick waving.

Home:
The never-ending round of washing, ironing and sorting stuff out. Maintain feeble attempts at decluttering. Keep teaching children how to sort out their own stuff. Try to recycle the kids’ toys without them noticing. Tidy the desk in my study. Pay bills/phone people/try to work out what to do about the wasps nest. Try to keep the house in enough order that I am not completely embarassed if someone drops ’round. In this area I am blessed with a fantastic friend who cleans for us and I also have a wonderful robot hoover. Both are essential.

Friends:
See as much of them as possible. Spend a significant amount of time on facebook keeping up to date with them all ;) Read the books for the different bookclubs. Book restaurants (my favourite places) and find people to visit them with me. Remember to tell them how fantastic they are.

Christmas:
(Today I bought Christmas wrapping paper. I have never bought for Christmas in November before, I think all that time on Facebook is filling me with a sense that it somehow needs sorting NOW). Try and work out how to meet boy demands for a wand that does real magic and a broom that really fles. Keep telling the girl that Santa’s elves don’t make mobile phones. Spend some time thinking about making some presents (I suspect I won’t get around to this this year.) Organise Sinterklaas meal for family.

Paid work:
I teach for a parenting charity and it is good, rewarding work but it involves a lot of emails and trying to find the right support for those who have specific concerns. Keep on top of these emails. Plan next courses. Explain to people why I am still doing it even though I have announced I am giving it up more than once.

Marriage:
Pay him some attention!

Hobbies:
Stop feeling guilty about the lack of pilates. Do more orienteering. Finish the Star Wars cross-stitch (maybe it will distract him from the lack of Christmas broom.) Carve out more time for knitting/crochet/cooking (all of which I love.) Find some time to do the census transcribing for a charity I volunteered for and for looking at the family history stuff my uncle gave me. Read more non-fiction. Conquer Candy Crush compulsion which will help with that time carving.

University:
Keep going. Stop panicking. Prepare for first exam in a month. Turn up at the hospital every day and learn things. Try and remember the stuff I am learning each day. Stop pointless worrying about what life is going to be like if I DO pass the exams and have to work such long hours.

and finally the MS:
Remember the injections every day. They really are helping. Yesterday was a bad day but currently most of them are good. Keep finding people online who have MS but are living life to the full. Continue to ignore all theories that tell me that if I stopped eating sugar I would recover completely. But I HAVE started trying to take high dose vitamin D every day (lots of evidence for this) but I keep forgetting. It’s almost as if I don’t have the time for it…

It’s not always the MS

It is 121 days until my finals exams and it safe to say that background panic levels are rising within me and some of my friends. It was helpful this week then, that at our weekly practice session I could show them my dodgy eyes for their educational benefit! I currently have something called nystagmus. In user-friendly language this means “wobbly eyes:” if I try to follow a pen my eyeball flits around. I don’t have it all the time, can’t always tell when I do have it, but having it is a sign that all is not 100% with my health.

It has been a stressful week. My husband has been away, the cat has been ill and forgetting a key event in the school calendar meant a sad little boy and lots of irrational breast-beating from yours truly. I have also started a new placement with a slightly intimidating supervisor who already patently thinks I am worthy of contempt. She asked me a simple question and, on the spot, my mind went blank. She curled her lip. I wanted to stamp my foot at shout “it’s not fair, I literally have patches of nothing where I used to have brain, how can I be expected to remember words like diabetes!*”  And then I started getting all “MS-y” again – deadness in my right arm, tingling in my right hand, dizzyness and swirly headaches (technical term.) This followed by days of nausea and lack of sleep and I was all set to sink into a gloom about the injections not working. Every other relapse was separated by six months, mine’s a month overdue but here it comes…

Or not it seems. In previous posts I have mentioned avoiding the MS fora but I had a bit of a look (mainly to see if I could blame the injections for my symptoms) and read repeated warnings about putting everything in life down to MS. There is a completely irrational part of me that believes that now I have MS that I won’t get anything else – I am immune to cancer or heart disease or anything else nasty. I also forget that in the autumn loads of people get colds. My husband has had a cold since the marathon. He tells me how difficult it is to feel achy and tired all the time (I gave him one of my looks).  Both of my children are croaky, and my university friends are one by one taking to their beds …. Hang on! Maybe I’ve just got a cold – sore throat, a bit feverish, a bit headachy, want to sit in my pyjamas all day – tick, tick, tick, tick (the last one is a tick but also normal for me.) And so the learning curve of living with a long-term condition goes on – if you have MS viruses give you MS symptoms, bacterial infections give you MS symptoms, stress gives you MS symptoms (my eccentric neurologist once advised me to avoid “stress, getting cross or ever getting tired … so give up the medicine and the children”), not getting enough sleep gives you MS symptoms (saw the same neurologist last week who resisted all efforts to get modafinil from him but did prescribe “three cans of red-bull a day”) even pre-menstrual hormone changes give you MS symptoms. And it’s OK. Well, I mean its a pain in the arse, but knowing that’s why I sometimes feel a bit off means a bit of me can stop being so scared of relapses … and I can focus all my fear on counting down the next 121 days…

 

 

 

*(For the reassurance of all future patients I can remember things but sometimes I can’t think quite as quickly as I used to.) Your children will be safe in my hands. I still remember how to make a puppet out of a surgical glove… :)