Lazily buzzing through flowers and trees…

So that’s that then. Medical school all over. My job starts at the end of July (conveniently just as the children break up) so until then I am on “holiday.” Three weeks in and so far I have moaned about it to everyone I have seen. I am VERY bad at relaxing; a spa day would be my idea of purgatory. I like being busy, and having a massive to-do list which I can then also moan about to everyone I see. Don’t get me wrong, I have a mini “bucket lost” for this time off which includes experimenting with kitchen gadgets, reading the books on every major prize shortlist this year and crocheting a blanket but three weeks in I don’t seem to have made any progress with these projects because my body has reacted as it always does to “down-time” by shutting itself down.

If you have been following the blog you’ll know that I have been relapse free for almost a year now since I started on the copaxone. I have had a couple of wobbles in the last 12 months but am actually very well healthwise at the moment. Apart from the fatigue that hit me last week. MS doesn’t have many universal symptoms but fatigue is one that seems to affect everyone. The “science’ behind it seems to be that it requires more energy to send signals along unmyelinated nerves and therefore our brains get tired much quicker than normal (sadly it doesn’t seem to be that we burn off more calories as a result!) Read anything by anyone with MS and the battle with daily fatigue features repeatedly. It’s like wading through treacle, and sometimes like wading through treacle with legs that REALLY hurt. The only other time I have experienced fatigue like this is when I was in the first trimester of pregnancy when it is a struggle to put one foot in front of another and it can strike at any time while you are doing anything. But in my case it is much, much worse when I’m not working.

So last week, when I didn’t have work to provide structure to my day, my body decided that the lack of adrenaline was a cue to make me lie on the sofa and watch programmes about wedding dresses. For two days. I felt miserable about all the things I wanted to do and couldn’t and anxious that I would never get up again! Eventually the wave of fatigue passed and this week has been better but each day needs to have a to-do list else the sofa will drag me back.

Which makes me reflect on the treatment of MS fatigue generally. Until recently there were two drugs licenced for MS fatigue – amantadine and modafinil. The latter was the most effective but, unfortunately, also has the most significant side effects so the licence has been withdrawn. Conversations with my neurologist about this drug tend to go:

Me: please can I have modafanil, I think it will help me get through junior doctor hours?
Him: No.
Me: Oh go on.
Him: No.

And repeat until he finally tells me to get lost (in the politest, most charming way.) The specialist nurse who had witnessed this last time then referred me for a fatigue management course. I didn’t go. I know they can be helpful to many people but I know about sleep hygiene and the principles of energy conservation but this course would say nothing to me about how to manage a 48 hour working week with running a home and raising two children. Afternoon naps weren’t going to be an option. Part-time work is currently not an option. And, at the moment, NOT going to work makes the fatigue worse. There is something to be said for a reason to get out of bed in the morning and keep going all day. So work will be my drug. A busy ward round will be my occupational therapy. And the next four weeks need filling so that I don’t lie back down and start thinking I will never get back up.

 

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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.

“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.

“That horrendous neurological disease”

The holiday is sadly a distant memory, I’ve been back at the medical school two weeks and already am reminded, once again, that it is not a great place to be an “ill” person. Quite apart from the placement I am doing (which began with three days of standing up) and my new policy of non-disclosure (or more accurately not feeling the need to tell every new member of staff I work with – still trying to find the balance between being allowed to sit down and being treated like I am just about to break) every week someone tells us how horrendous it is to have MS.

Apart from type 1 diabetes and SLE the medical school curriculum seems unduly focussed on teaching about MS. Whilst I suppose that makes sense because it is relatively common, they don’t seem to have decided to teach us that it’s a condition (like the others mentioned) which exists on a spectrum of outcomes. Just as they imply that all people with diabetes will eventually go blind and have their feet amputated, all of “those” with MS will be in a wheelchair. Just after my diagnosis I met a local consultant, diagnosed with MS in later life, who told me that for years before diagnosis he had been delivering a lecture entitled “the worst five conditions to get.” Top of his list was MS! Full of hope I asked him whether he had changed his mind but he dashed the hopes by saying “no, it’s bloody terrible.” Thinking back to that conversation after 18 months I suspect he was in the middle of his grieving process – he was no longer able to use his hands to do the delicate yet macho procedures on which his self-image was probably largely established, he had experienced optic neuritis which I haven’t but imagine must be absolutely terrifying, and he worked in an environment which supported his own view that MS was the most dreadful of all diseases.

With the exception of paediatrics, I have had teaching about MS in every speciality we have covered. In my fourth year exams there were questions about MS on three of the four exams. In addition to neurology lectures I have heard about it in lectures about eyes, pregnancy, bladder and bowel, end of life care, lungs, vertigo etc etc. The “finest” example was when someone giving an obstetrics lecture referred to MS as “that horrendous neurological disease.” The upside of this is that it can generally be given as the answer to any question along the lines of “which diseases cause…?”; the downside is that it is a regular reminder of what MIGHT be to come. When I hear that I am bound to become wheelchair bound, incontinent, unable to eat or drink and end up dying because I can’t swallow my own saliva I find it difficult to know how to arrange my face. I am conscious that a fair proportion of the student body suddenly feel awkward or curious to see how I react – unsure whether to believe what they are being told at the front, or what they see in front of them. Because, of course, what we are taught as being likely is not at all inevitable.

The MS Society figures tell us that the majority of MS “sufferers” do not use a wheelchair. I read a report that told me that fifty percent of those diagnosed with MS had given up full-time work within five years BUT that means that fifty percent haven’t (I hanker after working four days a week but that’s not because of the MS, it’s because then I could get my washing done and go out for coffee etc etc.) Whilst I personally know people with MS who are poorly with it, I also know of people who have been well for decades. Indeed my neurologist (and neurologists don’t tend to share the doom-laden view of the other doctors) told me that 1% of people he diagnoses NEVER have another relapse. Now that wasn’t the case for me, but still I refuse to accept the idea that serious disability is my only destiny. I tell myself that many of these doctors were trained when the treatments just weren’t as good as they are now. When I was deciding whether to start the Copaxone  (going well by the way although they still sting like hell) I read story after story of people who were relapse free for years after starting it. For me, who was having a relapse roughly every five months and was at the time struggling to recover from the last one, this was all I needed to hear to convince me that this was going to keep me well.

All of this may be irritating to people who are much poorlier than me. Justifiably they can mutter “well what does she know, she hasn’t suffered too badly yet.” And if you read the forums and facebook pages it is obvious that there are people who are unable to stay upbeat, positive and hopeful. I empathise with the vast majority of these but have had to stop reading them due to my rising irritation with those (a minority) who seem to have taken their diagnosis as a reason to take to their beds and give up on life. Whenever anyone posts anything positive or hopeful they are there ready to tell them they are doomed and that all hope is to be abandoned because they will be unemployed/divorced/friendless/incapable within months. It would be unfair to say that everyone who is ill with MS reacts like this because there are plenty of people on the forums who, despite significant disability and difficulties, are always ready to offer sensible advice and wisdom based on their experience, yet the minority still make diagnosis even more terrifying than it is.

So I want to shout “look at me, it isn’t necessarily completely shit” but I don’t because, of course, it is still early days and there are significant challenges to overcome – not least in the next year. With fingers crossed that I am relapse free until after finals (if the copaxone isn’t working then I am due one, based on the previous pattern, this coming autumn), and that I pass the blasted things, this time next year will find me trying to work as a junior doctor – a job that another doctor described this week as the “worst f***ing year of your life.” Perhaps it is just in some people’s nature to be less than positive…

Dear taxpayer…

ImageYesterday it was my best friend’s birthday and a fun evening was spent celebrating it at a local restaurant. There I chatted to another one of her friends and we were discussing a Twitter site “BestoftheMail” which highlights some of the more bonkers comments left by Daily Mail readers. Today I wondered how the average Mail reader would react to my new medication regime – on one hand I am a middle-class, white, British woman, mother of two non-hooligan children, qualified teacher, training to be a doctor, “tragically” struck by illness in my prime – all very respectable and likely to elicit sympathy. On the other hand I am a (gasp) full-time working mother, a leftie, a feminist, a Republican, very keen on Human Rights legislation and multi-culturalism, an atheist and … I am now massively expensive to the tax payer. Not only do I not pay tax at the moment and “scrounge” around £50 a week from the NHS bursary, I now cost the taxpayer an additional £18 a day in a daily injection. AND I have been “gifted” a free sharps bin for my bathroom. I am a drain on society. What would Katie Hopkins have to say?*

So, how has the time between curling up on the floor in fear and injecting myself in hips been? It has been different to what we expected but nowhere near as bad. Since diagnosis I have had three relapses and an infection-induced exacerbation. They have been debilitating but not disabling and only once could I not walk at all. I have not required hospital treatment and have only had four days off work in total. So far, so good – I refuse to lie on the sofa and become “ill” so I make myself live my life as I always have done.

Some things have had to go – I have resigned from my voluntary work and from my role as a school governor, but this could be as easily ascribed to a Candy Crush addiction than to MS. I am giving up my part-time job but who in their right mind studies full-time and works part-time with two children anyway? There are things I can no longer do – I can’t do Zumba (shame), I can’t bounce on a trampoline, I can’t go on rollercoasters, and, with genuine sadness, I can no longer dance for an entire song. This is partly because of the dizziness but mainly because of the muscle fatigue. I can’t stand up for an entire ward round and, when it is really warm, I can’t walk up the hill from the children’s school to home.

Because it is the fatigue that is the real bugger of all this. At the end of every day my muscles and joints hurt. Through the day bits of me will become heavy, or be struck by pins and needles or a weird buzzing in the muscles which feels like a mobile phone on silent. Each day I am struck by a wave of tiredness that means I need to stop doing what I’m doing and have a rest. This is not entirely convenient if I am trying to supervise homework or make tea but it is OK – we are adjusting and I still live life to the full.

The latest relapse was the longest and caused us a bit of worry – I kept forgetting the words for things and stopped wanting to go out with friends, or have people for dinner, or do anything really. Weekends were spent pottering and sleeping and that wasn’t fantastic for the children (like many little boys, my five year old son is like a labrador and needs plenty of outdoor exercise every day!)  My MS nurse persuaded me that it was time to start what they call “disease-modifying therapies.” Beta-interferon is the best known of these but has side effects that can make you take to your bed, or cause/worsen depression, so instead I opted for Copaxone. It is a daily injection but has few side-effects and is designed to try and reduce the rate of future relapses. My relapses have been frequent but relatively mild – the wonderfully upbeat nurse reckons the injections might mean I don’t have another one for years.

I have 362 Facebook friends. I am a really big fan of Facebook; when people tell me they are not on there I am genuinely puzzled as to how they keep up to date with what is going on with their friends and the wider world (apparently they talk on the phone and read newspapers – weirdos.) I have an eclectic mix of Facebook friends – my family, my friends, ex-colleagues, ex-students (now young adults and refreshingly un-Daily Mail), new parents who I taught as expectant parents, old school friends, current co-students and many people who I know only because of the wonderful forum-filled world of the internet. I have decided to pretend that each one of them has individually paid for a day’s injection, which will take me to next summer when I should start paying taxes again. And so I thank them, as taxpayers (or future taxpayers) for allowing me the opportunity to be well – to qualify (please, please) as a doctor, to laugh with my husband, to sweep my boy into my arms for the best cuddles in the world, and to have the mental capacity to answer the very many questions of the world’s brightest and most curious** eight year old.

Now – where’s that sharps bin…?

*Incidentally Katie Hopkins has this week declared that having a children is a luxury in our cash-strapped times and that all maternity leave should be capped at 6 weeks, unpaid. You can find her article in The Huffington Post on Twitter, but not today if you are following the boycott.

** This assertion is not proven fact 😉