#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

 

 

 

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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.