#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.

End of term report

End of term reportS has had a generally good year with some promising aspects in her development at work and home. There are still some ongoing areas for development which are preventing her from being entirely satisfied with her progress to date.
Work: S has now gained full registration as a doctor. This will come as a surprise to her non-medic friends who thought she already had that. She has had a generally successful year, although we note that her enthusiasm levels have dipped occasionally. Surprisingly, she has shown no interest in doing any of the exams necessary to further her career. This is particularly surprising to her younger colleagues, many of whom are mightily ambitious and energetic! Nevertheless, her bosses seem happy with her progress, her admin skills remain top notch and the people she looks after seem to like her. She continues to worry that this is all smoke and mirrors and, at some point, someone will realise that she doesn’t know half the stuff she knew during her final exams only last year.

Overall: good progress
Parenting: S is finding parenting a sweet-natured seven year old to be thoroughly rewarding and enjoyable. She is adept at hugs, providing cheesecake, praising piano skills and making up silly voices for reading books aloud. She is less good at feigning interest in Minecraft and always listening when he talks about Star Wars/Harry Potter/pokemon/moshi monsters/multiple other all-consuming obsessions. Must try harder.

More challenging is parenting during the maelstrom of early-pubescent hormones that seem to have taken over her ten year old. Despite her best efforts S is currently not succeeding in pleasing said child and there is a great deal of stomping, shouting and sulking taking place on both sides. S needs to remember that she is the adult!

Overall: needs further development
Marriage: There has been a mutual decision to never again go on a camping trip together. 

Overall: happy state achieved despite daily stresses and occasional grumps.

General life: S has not effectively got on top of her domestic to do list. Her living room curtains are still hemmed with safety pins and the decluttering project is still not in progress. Despite the plethora of cookbooks she owns she does seem to serve an awful lot of pasta and her front garden desperately needs weeding. S also continues to occasionally clumsily blunder her way through interactions with other people but is blessed with loyal, tolerant and life-affirming friends who luckily don’t mind if she is sometimes a numpty. She needs to develop more emotional resilience although her lovely friend J says that she also needs to remind people that she doesn’t wear a sticker saying “please tell me exactly what you think of me at all time” because actually she is a bit of a delicate flower. She has been attempting to list on Facebook things to be grateful for each day with varying success. One day she could only list being grateful for soup. Her friends would be more grateful if she posted less on Facebook.

Overall: work in progress

Health: S is the proud owner of a shiny silver stick. She covets a spotty one. Generally she has had a good year health-wise and has astounded her husband by actually being able to run (read plod ungainly.) She is entered for the half marathon which is ridiculous but she can’t drop out now because she is raising money for the NSPCC (running for the MS Society seemed a little self-serving!)
But she is bone-tired and hasn’t been feeling great recently. For three months now her pesky migraines have returned to plague her and scupper her attempts to be ever cheery. This has meant multiple trips to the kindly GPs who, at one point, offered her dementia screening because it was offered to everyone with MS L The new tablets seem to be working but it’s tentative progress. Even more irritating is that she can’t see properly out of one eye and that the fatigue is, at times, overwhelming. Having to sleep during the day affects her mood as she feels like she is unable to do any of the things she needs to to improve all the things listed above. Although the ten year old likes a mummy who lies on the sofa watching TLC because that’s all she wants to do as well – so maybe that’s a bonus.
General summary: S tries hard but is showing signs of really needing a holiday. Unfortunately she doesn’t have one planned so instead she might just treat herself to an end-of-term cider, watch rubbish TV with one eye and pretend it is mindful, ignore the curtains, and maybe have another nap…

No news

It occurs to me that I am the worst blogger because I keep neglecting to post. This is because the blog is supposed to educate and inform about MS and MS is the least significant aspect of day-to-day life at the moment.

But then it occured to me that I could tell you (and more specifically those newly diagnosed and stumbling over this blog) that: that three years on, at the moment, I have neither headspace nor need to think about MS every day.

No room for it amongst work/children/Mr C/friends/playground politics/endless domestic admin/holidays/feeble attempts at running (yuck)/reading/drooling over cookbooks/mooning over dress catalogues/fannying around on the internet.

And no need because everything seems to be in relatively good working order.

Hope everyone else is finding things to help them relegate the rubbish to the bottom of the pile.

Mothering Sunday

Last week the final year medical students at our university got their exam results and this week they started “assistantships.” This is essentially a period of time where they do the work of a junior doctor under direct supervision. It’s been a great week; we have great enthusiastic, helpful students and I get to be a teacher again. And not only about medicine, I took the opportunity to drone on a little about the history of the British Mothering Sunday – a date in the Christian calendar where you are supposed to attend your “mother Church” and so a date where traditionally domestic servants would be given the day off to return to their families and attend the main Church in their area of birth. 

One of our students was telling me that his mother was excited for his visit home this weekend so she can celebrate her son, the new doctor. And as he was telling me I realised that for many people Mother’s Day is a straightforward day where they go and make a fuss of the woman who loved, supported and raised them.

But for some the day is not straightforward. For me it is not straightforward.

The Internet is not the place to talk about my mother, who is still alive but not a part of my life. Suffice to say that even when we were in contact there was never a verse in a Mother’s Day card that reflected the complexity and difficulty of our relationship. Spam emails about celebrating wonderful mothers are never really welcome here.

And of course I too am a mother. A mother that took a long time to get used to the role. For many years my lovely husband used to treat me to a weekend in a boutique hotel with a huge bath and wonderful food, all by myself, as a Mother’s Day gift. And I needed the escape. I love my children but when they were small I frequently found them overwhelming …  frustrating … exhausting. I wasn’t the patient, perfect mother I had hoped to be (although I now realise none of us are!) and, on occasion, I felt the urge to run away.

Of course they don’t stay young forever and now the great moments of motherhood come every day but I still deal with the bad moments badly. I don’t need to escape any more because life is less exhausting. It is also much more fun and now my gifts are home made and full of little person love. But the day will still be spent trying to keep the eldest in good humour and the youngest off the iPad. Mother’s Day, a day celebrating my role, doesn’t feel real. Perhaps it won’t ever feel that it’s about me while I am still someone’s child. Perhaps it won’t until they are young adults and coming home from university/work/travelling with a bunch of flowers and a hug for their daft old mum (hopefully successful, happy and above all, healthy. I can cope with my diagnosis, I couldn’t cope if they had inherited these dodgy genes.)

So it’s a complicated day for me. But I also know it’s even more complicated for others and so tomorrow I will be thinking also of my friends.

Thinking of my lovely friend who recently lost her mum to cancer. The funeral is on Monday and despite her strength and determination to get on with life I can’t imagine the pain of having to face her first Mother’s Day without her so soon.

Thinking of the wonderful woman who cared for my babies with love and patience at the local nursery who does this work with determination every day despite bearing the unutterable sadness of infertility.

Thinking of those who are both father and mother to their children without help or a break.

Thinking of those struggling hard to keep their relationship with a child a positive one despite all kinds of challenges – external, hormonal and medical.

Thinking of those who mourn for the loss of their children and those who miss their mums.

To all of you I send my top tips for coping with tricky days: a deep bubble bath, chocolate pudding with chocolate custard and an episode of trash TV. And a reminder that you are not alone in finding this day hard – I am thinking of you and send you strength to ignore the interflora adverts and unrealistic expectations.

Work, life, balance

While the neighbours enjoy the sounds of the children bouncing on a trampoline and I await the arrival of curry and the start of Strictly I am musing fondly on the joy of family weekends. It must sound odd because we have been parents for nearly ten years, but the idea of a weekend is relatively new around here. When they were little and I was still teaching weekends were often just a more exhausting version of weekdays; small people don’t allow for hanging around reading the papers and pottering which is what I like best. Then, as a student, weekends were spent working (either teaching to try and contribute something to the food shopping bill, or studying) or feeling guilty about not studying. There was no “Friday feeling” because the work didn’t ever end. Now I am enjoying weekends of “nothing to do.” By which, of course, I mean cleaning, shopping, ferrying children around to different clubs, parties and activities, fitting in the Forrest Gump running tendencies of my husband etc etc. But there are also lie-ins, the weekend papers, seeing friends and time to play. There is a sense that I am working hard but that I get proper time off.
My dad will be pleased. He worries about my lack of “down time” and has long been (gently) urging me to try and reach more of a balance. And I have never been balanced (I blame my recent emotional lability on the MS but actually I’ve always been like this!) I have always worked too hard and taken on too much. I am a joiner and never like to say no to an invitation. There’s too much I want to do with each day. I want to be an expert cook, super singer, virtuoso knitter, an active campaigner, a “culture vulture.” Oh yes, and a good doctor/mum/partner/sister/friend. It isn’t always possible and the scales occasionally tip precariously.
And I don’t always balance. I spent a year falling over. I fell off chairs, fell over in supermarkets and toppled in operating theatres. I had an unusual initial presentation of MS – most people seem to have either sudden weakness or eye symptoms which end up with them being reviewed by the neurologist. I remember sitting with a fellow medical student looking up causes of vertigo and seeing MS right at the bottom of the list. Experienced medic friends joined me in dismissing it as a likely possibility, consultants in other specialities told me it definitely wasn’t MS. But an MS weeble I was. I worked hard, did my rehab exercises and can now do a Sainsbury’s shop whilst staying upright but the balance at home still sometimes alludes us. Amongst the issues are:
1) providing balance for a nine year old who is bright and ambitious but who is so busy with sporting activities that she lacks the time/motivation to do the academic work her mother is conditioned to value above all else.
2) allowing a six year old who has no “down time” in the week to spend as much time as he would want at the weekends on some form of screen. He is exhausted by full weeks of school/club/childcare necessitated by the working hours of his parents and fully relaxes with Minecraft or Temple Run. But getting him off the screen can be a battle and none of us have got this balance right.
3) In a world where we are hyper aware of the dangers of Internet bullying and stranger danger how do we equip our children with independence? How do I balance the desire to let my daughter to explore the world, walk home from school, enjoy what the Internet can offer her with the need to make her aware of why she always needs to be vigilant.
4) How can I balance the needs of a boy who tells me he is never cutting his hair and wants to look “different to every boy in my class,” with the anxieties of his grandmother who says his hair makes her weep 😉
5)After five years of putting my “fulfilment” first it’s Mr C’s time. His choice is not career change but proper running. He seems to have a talent for it and is chasing ever better PBs over ever longer distances. But is sure does take up a lot of time and we are ever more time poor.

However, these are essentially first world problems. And in one area we have a balance which has improved all of our lives. When I met my husband we quickly formed a modern partnership based on a 50-50 split of household responsibility, domestic chores and financial contribution. Children, part-time work and then years of study tipped this balance out of whack. He earned the money and I ran the home and family. He did almost the same amount of stuff but I “project managed” everyone – I did the admin, the sorting, the planning, the phone calls, the shopping, the cooking, the laundry; all the stuff it takes to run and home and family and I issued that family with list and instructions to keep it all going (lucky them!) Now I can no longer do it all because I am at the hospital for so many hours a day. Someone asked me this week if my husband “minded” and was surprised when I said he was pleased. Because now we have our balance back. We are both responsible for getting it all done and it feels more natural to share the load (and the costs.) I make fewer lists; he has started knowing when things need doing and who is supposed to be where. I even walk in to dinner on the table some evenings! So while the weeble phase is in remission long may it continue.

Love and best wishes.

(Disclaimer: contains soppy sentimentalism and may cause feelings of nausea)

An ex boyfriend of mine got married last week. He is the only ex boyfriend I am still in touch with and it was lovely to see his joy. It does feel a little odd to talk about “ex-boyfriends” when you have been with the same person for 17 years but it led me down a path of reminiscence of past relationships and, on the whole, I enjoyed the nostalgia. This has been extra fuelled by watching the first series of Girls and wincing at mistakes made and melodrama played out in my own history.
My daughter asked me how you choose a husband and why I chose her daddy. I talked a little about what not to choose and what not to accept, but only a little because she is only nine. I also talked about how not to treat people, drawing on my own guilt at adolescent meanness. I told her about my first, kind and gentle boyfriend who gave good cuddles and whose mum always fed me up, with both food and love; I didn’t explain how he and his family provided me with a refuge from troubled times at home and I didn’t expand on how I abandoned him to go and smoke and drink and listen to The Levellers in fields.
She knows the simplistic answer that I left the next one (the now newly wed) because he “kissed another girl.” I haven’t yet told her about the unsustainability of a relationship built on 17 year old intensity and over-emotionalism (mine) combined with fiery academic ambition (mine) against a desire to explore different ways of living and simply just be chilled (very much his.)
And she knows there was a mean one. She doesn’t know, may never know, how mean but I fear that one day she will also put up with rubbish because of “love” as many of us do in our early 20s.
“So how did you know Daddy was going to be our Daddy?” At 23 I didn’t know. I knew he liked my hair, liked me being clever and liked being around me. In our 20s he proved himself not completely terrified of helping me cope with some of the remaining damage from a troubled childhood and in our 30s has supported me through postnatal depression and our new unpredictable challenge of MS.
The other day a friend on the brink of engagement asked me “what is good about being married?” It was the middle of the night and I was even less eloquent than normal, but what I wanted to answer was: it’s not the marriage per se, it’s the overwhelming feeling that you are in it together and that, whatever happens, you won’t be fighting it on your own. We are stronger together because of knowing that the other one is always willing to glue back the fragile pieces. Our future is uncertain – the past three years has been about getting used to the idea that a big relapse is coming, and then trying to live life to the full despite that. And when I read about what I should be doing/eating/thinking to combat the MS I simply think I have what I need to fight today’s fight – great friends and family, fulfilling work, fantastic kids, daily little injections and my Mr C.