#thanksliving

It’s a fortnight since we got back from a “holiday of a lifetime”  – long haul flights, theme parks, cruise ships and Caribbean islands. It was long planned and much anticipated and three of the family had the “best time ever.” My own fun was a little limited by my first ever experience of the flu and although I still had a great time my mood since returning has been a little flat. Post viral fatigue on a background of demyelination is enough to keep you in your bed for a week it seems!

But the weekend brought an improvement, gave me time to catch up with some friends, and it also brought the sunshine and things look rosier. I really like spring and it’s the five year anniversary of my diagnosis this week – time to compare what I thought my life might be like at this point to how it actually is.

As readers of previous entries might know, as well as fear and uncertainty, a prominent emotion at the time of diagnosis was relief that what I was experiencing was “real” and that it had an explanation. I still feel this now. I have a diagnosis that people recognise, I qualify for various “treats” such as a blue badge and my new shiny radar key, and I generally understand the course of my own particular version of this illness so that when I do take to my bed I am (at least 75%) confident that at some point I will be able to get back out again. And the darkest fears that kept me awake at night half a decade ago have not come to pass. I can still ride on (tame) rollercoasters, I can still drive huge American cars, I can still walk around Diagon Alley with wonderment instead of pain and, even if I can’t scuba dive, I can still watch my family do it from a lovely boat floating on a turquoise ocean. I am a lucky woman.

Day to day I try to remember how lucky I am but, inevitably, the positive feelings can be buried under the pressure of being good enough at my demanding job whilst giving enough time to children who need more emotional input than ever. The anxiety of a never-ending to-do list occasionally makes me want to hide under a blanket and on those days I don’t feel thankful or grateful. But I also spend a period of time each year trying to focus on the things each day that I have to be thankful for. Because I am a chronic over-sharer I tend to outline these on Facebook which I worry may come across as a little smug, but one thing I am trying to cross off the to-do list is “worrying what other people think of me.” It helps me, it is appreciated by many people I love, and it may inspire people to find their own good bits in stressful, frenetic and occasionally troubled lives.

The inspiration for this year’s positivity comes from two places. Firstly my choir. I love my choir. I am almost certainly the least tuneful member of it but no-one is mean enough to mention it. And we sing a great warm-up song with the lyrics “love lifted me.” Every time we sing it it makes me think of all the ways that love has lifted me up when illness/stress/exams/worries about children, money, relationships etc has laid me a little low. The love of other people and the ways in which they show it rarely fails to lift me but perhaps I don’t always acknowledge how grateful I am for that. So my first tag this month will be #loveliftedme.

And the second comes from another place where I feel calm and mindful and that is the Church where my husband and children are members. I am not a Christian; I don’t have a religious faith. My husband has faith but was disillusioned by the narrowness, intolerance and small-mindedness of the Church in which he was raised so didn’t attend for many years.  But he has found a spiritual home in the place he now attends, the children subsequently chose to be baptised there and I like to go along to sing, see people, and listen to the sermons that preach messages of love, inclusion and self-challenge. A recent sermon by a visiting Minister discussed the concept of “thanksliving” – of living each day purposefully acknowledging your blessings and actively showing your thanks for what you have. This could be through daily acts of kindness, charitable works and volunteering, or simple recognition of what you have to be thankful for. References to this on Google are almost universally faith based but there is no reason why it can’t be applied to a secular setting and this is my new challenge.

I face the same difficulties as any working mother. I am tired, my children are over-scheduled (although happy to be so it seems), I communicate with my husband mostly via text arranging who needs to do what when, I fail to give any of them five portions of fruit and veg a day and one of my son’s classmates last week told him the world book day costume didn’t look like I had “put much effort in.” (!!!) I haven’t had my hair cut in a VERY long time and I can’t remember the last time the windows were cleaned. I don’t give enough energy to my work and I wish I had more energy available to see my friends and family. And I have a (currently) incurable and progressive neurological condition which, on some days, makes all of the above seem less like a quirky list of shortcomings and more like an overwhelming ledger of how I am failing.

So I will do what I need to do to focus away from the malfunctions and towards the loveliness. Away from the irritation and more to the blessings. I hope it doesn’t annoy those of you who see it, but if it does I apologise a little but it is helping me a lot!

#loveliftedme   #thanksliving

 

 

 

Let it Go

It’ll soon be five years since I was diagnosed. Five years of learning about this weird condition and my own particular version of it. Five years of working out what I can and can’t do; what I want and what is still left to strive for. And recently I have been thinking more about what I want – what I want to achieve, what I want to do work-wise, how I want to live, who I want around me.

 

In December I changed job roles (again – the shifting nature of the junior doctor years goes on and on!) This time I was to find myself in A&E, a notoriously difficult place to work – very physical, horrible rotas, facing crisis every day. Whereas I had been very well in my sit-down, office-based GP world with long but regular hours, the very thought of this new change made the fatigue kick in and the legs give out (more on the effects of stress and anxiety on my MS in a future blog I think.) So to be proactive I decided to seek some adjustments at work. Although I would ideally work part-time I feel the pressure of my age and unpredictable heath to complete this final stage of my training as quickly as possible. So off to Occupational Health for me to ask for “reasonable adjustments to my hours.”

The result was satisfactory – limited to 50 hours a week, no more than five working days each week and a reiteration that I don’t have to work nights. The process was generally smooth, the occupational health doctor was lovely and I found the whole experience … deeply upsetting. Why? Because I had to sit in a room with a stranger and talk about all the ways in which this disease makes me feel not quite normal. To everyone else I downplay most of this stuff; brush it off with talk of “feeling a bit rough.” Here I had to talk in detail about the days when my legs wobble or the days where I have electric shocks shooting around my body. The days where getting out of bed feels akin to climbing a mountain, or the days where I should be using tena lady (but refuse because I am too damn proud) or the awful, awful moments where I can’t think of the word I need (this is increasingly the most distressing part of my condition – I forget words daily now and apologise here to the friends who have to put up with my blather. My husband has developed the habit of finishing my sentences for me – I am not enjoying hat much! )And I had to explain all of this whilst desperately hoping that she wouldn’t say I had to stop being a doctor. Because I think I am a good doctor. I am even a pretty good A&E doctor if I don’t have to move too fast!

And she didn’t say that. Of course she didn’t. I am “mildly” disabled most of the time and patient care isn’t affected. But it shook me and I had been feeling a little low and anxious since. A friend and colleague recommended a website called moodgym (an Australian website which is CBT-based) and it has proved very useful. There are core erroneous beliefs that we all cling to despite them being unhealthy, and in times of anxiety they manifest themselves more strongly. So my new year’s resolution was to challenge those “wrong” thoughts, to try and eradicate unnecessary stressors and to “take it easy on myself.” When your body is unpredictable the rest of your life needs to be much more so. As dull as it is I need routine and regularity – routine hours, regular activity, stable relationships and a reduced to-do list.

So I have made a NOT TO-DO list

  • Stop working shifts. This is relatively easy to achieve as I have just finished my A&E work. But for future work planning I need to remember that what my body needs is to generally get up at the same time each day and go to bed at the same time. It needs food at regular and predictable intervals. Daytime sleeping makes the fatigue worse and my mood lower.
  • Stop the physical challenges. I gave up PE when I was 12. Before I was diagnosed the only exercise that I actually enjoyed was dancing and possibly a bit if swimming (if it wasn’t too cold … and there wasn’t anything good on the tele…) After diagnosis I seem to have been sucked into a world (of my own creating) where I need to be one of those people who will “defy the odds” and run marathons/do open water swims/climb mountains. I decided I was going to train for a 10k run in a couple of months – partly driven by the desire to shift some excess weight, but also by the “need” to prove that I am still physically capable. But I never was physically capable! And I definitely am not now. I started training and took to my bed. So I’m not going to do it. I have nothing to prove to anyone. I do enough as it is (50 hours working week is still pretty full-on!)
    I will still do the long bike ride in the summer that I have planned with my lovely friend, but we can take that steady, and eat Mars Bars on the way.
  • Stop obsessing about other people. I am VERY bad at this. I am quite a jealous person and also quite an over-sensitive one. Slights cut me deeply and it takes me ages to move on. I waste a huge amount of emotional energy fretting and it is starting to sap my physical energy too. So it is time to put a stop to it, and to remove myself from some friendships that are only causing me anxiety and, in some cases, anger. As a wise friend said to me the other day “you only have a limited amount of free time, why waste it seeing or thinking about people that you don’t even really like or have been mean to you or yours?”
  • Stop filling every moment. The cult of busy is strong in this house. The children are crazy busy and keep pestering to cram more in (although the boy child, recently turned 9 did burst into tears the other day because he “didn’t have enough time to play Fifa!” We had a chat about first world problems.) I like a nice full calendar – I like to see my friends, I like to sing in my choir, I like to eat in restaurants and have people for dinner. But I am approaching burnout. Me and Mr C haven’t spent an evening in together since Christmas. So I need to balance seeing the people I love who don’t live with me (and who are a great factor is keeping me steady – in “lifting me with love”) with the seeing of the one who does.

 

So my theme of February is “Let it Go.” Let go of guilt, let go of toxic relationships, let go of frantic busy-ness and, hopefully, let go of this anxiety.

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: )