Self-nurturing Ideas

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Staring at Geraniums

Staring at Geraniums

I don’t think I’m alone in this. My body craves high energy food and intense mental stimulation in direct proportion to how depleted I am. So I eat rubbish and clamp myself to the computer or tv where ready sources of my fixes are to be found. When you’re on your knees the path of least resistance is highly attractive.

Occasionally, I’ll have the energy and presence of mind to ask: what can I do now to best care for myself? Generally, I’ve answered that by taking some form of ‘time out’, usually a meditation or relaxation audio. Lately, I’ve asked what else I can reasonably do that is self-nurturing and liable to promote healing, or at least enrich my existence.

The list that follows is what I’ve devised, written in the order that ideas came to mind. Looking at it, I see that stuff can be grouped together into activities that please the body, mind, spirit and the five senses whether singly or in cumulo. Some of them are simply about feeling more like my old normal self. The ones I’ve starred are rather more aspirational than realistic right now.

The quality, duration and effect of each will depend on how I’m feeling at any point. I’m conscious that overdoing any element, or choosing badly, will have the opposite effect to the one I desire but I’m giving things a try.

So far, I’ve rediscovered my record collection. Listening to the tunes of my youth has been a remarkable experience. Lots of tears. I’ve also had a scented bath, by candlelight, practising my deep breathing technique. I was given a bouquet of roses last week and have spent time just looking at them, marvelling at their intricacy and beauty. I even had my make-up on one day!

I don’t think a list like this need be the exclusive province of the chronically sick. I think everyone could benefit from devising ways that help them look after themselves. Only I guess that such lists will be rather more adventurous.

1. Sleep/nap
2. Lying still in a quiet room
3. Three diaphragmatic breaths
4. Listening to music
5. Meditation/relaxation session
6. Bath
7. Applying hand/body lotion or perfume
8. Doodling/colouring-in
9. Journal writing
10. Blog writing
11. Prayer
12. Small amounts of nutritious food, eaten mindfully
13. Laughing
14. Crying
15. Stretching
16. Yoga poses*
17. Physical activity*
18. Fresh air
19. Short visits/telephone calls
20. Massage
21. Knitting/Cross-stitch
22. Just sitting looking at something nice
23. Taking a photograph
24. Looking at photographs
25. Something achieved, no matter how small
26. Sending someone a letter/text/email/tweet
27. Act of kindness towards anyone
28. Drinking a glass of plain water
29. Brushing teeth/hair
30. Dressing nicely/putting on make-up
31. Singing
32. Dancing*
33. Spot of gardening*
34. Cooking
35. Interior design*
36. Heartmath
37. Candlelight
38. Reading
39. Menthol inhalation
40. Drinking fresh vegetable juice.
41. Giving a compliment (or receiving one)
42. Companiable silence/ time spent with my children
43. Practise feeling grateful.
44. Hugs

Language and Metaphors

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Consider the following alternatives:

1. I suffer from symptoms of asthma
2. I have asthma
3. I am an asthmatic

Can you see the difference? Does the language with which we describe our illnesses matter? I think it does. Our lives are a story that keeps unfolding. A large part of that story is determined by what we tell ourselves, and others, about ourselves. Whether you feel you suffer symptoms, own an illness or identify closely with it is a personal choice or, perhaps, simply intuitive but it shapes who you are and informs your behaviour and other choices.

As it happens, I do suffer from asthma symptoms (since early childhood) and I’ve noticed that as my condition becomes more easily managed owing to medical advances in treatment , my attachment to it as a facet of my identity has loosened. So you’ll notice my choice of language now where 30 years ago I would have been labelled-and labelled myself-an asthmatic.

I wonder, however, if that choice is as free or intuitive where ME is concerned. Consider the following alternatives:

1. I suffer symptoms associated with ME
2. I have ME
3. I am an ME sufferer

If asked by a stranger, how many of us would opt for the first alternative? If not, why not? One reason might be because not only have there been few medical advances in treatment there is as yet a complete dearth of understanding about what the condition actually is. Accordingly, very, very ill people are forced to raise awareness and plead for sympathy, understanding and support. Shamefully, this often needs to be directed at health professionals. Thus there is a sense of taking on responsibility for promoting just what’s involved: the sheer relentless, devastating, debilitating awfulness and that means identifying very closely with what’s going on in our bodies.

Ideally, I would aim for option 1 as it gives me the hope that at some point I will no longer suffer these symptoms. They will go as they came or will be capable of easy management. I certainly don’t want to own ME and as for it being my identity …..[insert suitable expletive!]

I’ve noticed in a few articles recently fantastic examples of people using language, specifically metaphors, to describe their experience with ME. Paul Tomkins describes it as half a man, one half stolen. You can read more about this here and Marie Curran describes it as her invisible friend here. Both articles are beautifully written and thought-provoking and I’m grateful to Paul and Marie for sharing their insight.

For my part I have long envisaged ME as an uninvited, abusive monster that lives within me and with whom I am forced to co-habit according to his draconian rules. ( Sorry guys, but I very much see ME as male!) More specifically, my ME monster looks like the giant in Jack and the Beanstalk; he’s huge, powerful and I have to tip-toe round about him so as not to wake him up and rouse his ire. He’s also very fickle. One day I might happily potter around with him only grunting in his sleep but on other days the same level of activity will unleash a ferocious backlash.

I’ve found the only way to handle him with any degree of success is to bore him into submission, largely by a process of aggressive resting, as I saw it described recently, living within my capabilities and taking few risks. Not much of a way to live (understatement) but accepting this does bring a measure of ease.

By using such metaphors we are able to try to make sense of our situation, to communicate with ourselves, with other sufferers, and with the wider world with the ultimate aim of getting ME firmly on the scientific research map to deliver treatments so that we (being optimistic) and those who come after us may have a chance at really living.

Over to you, what story do you have to tell?

Is It Really That Simple?

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I asked myself a question: what is it that I do that makes me feel worse/better? Here are the answers:

 

Worse Better

 

    • Standing/walking (physical activity)
    • Relaxation/Meditation session
    • Computer use
    • Reading/dozing
    • Disordered sleep
    • Restorative sleep
    • Emotional upset/worry/stress
    • Love and compassion
    • Eating
    • Drinking water
    • Infections

 

At first glance it seems so very simple. The first category are stressors, the second relievers. Avoid the first and do more of the second and surely recovery is a given?

 

Is it really this simple?

 

Of course not. So much is outwith our control and we can hardly avoid eating and standing up! What we’re left with is trying to forge a balance, sometimes from moment to moment, depending on what the external world is throwing at us and what our bodies are capable of withstanding. This involves making conscious choices we know will make a difference: choosing the right foods, having a rest instead of being clamped to the computer and so on. And not giving ourselves a hard time if we don’t manage.

 

Also, there’s a world of difference between feeling better and being recovered. But feeling better is a good start!

Holiday

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eilidhh's 271It has dawned on me that I’ve reached a point where my recovery is going nowhere. Since my last day at work, on 6 June 2013, my principal occupation, nay preoccupation, has been to strive to recover a reasonable level of health and functionality. I have treated this as I would have any legal problem: engather and analyse the facts, take expert advice, assess the options, and proceed accordingly. At this point, I feel that the facts are not certain and impossible to establish, and the advice contradictory and confusing. I don’t even know for sure what illness I have: is it ME, Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome, Dysautonomia, Cardiac abnormalities or an illness that is peculiar only to me? I have no definite idea of its causes, its pathology and thus no certainty about what to do for best.

I spend a lot of time seeking out information and advice. Lately, where I would have found inspiration from a recovery story I feel alarm. Typically, they run along the lines of; I was desperately ill, tried everything, limped along, then finally the key element dropped from the sky and now I’m running a marathon. That key element varies enormously from finding sensitivities to mould, diet change, addition of supplements, to psychological or other lifestyle changes. How do I know what my key element is or even if I have one? I’ve found myself questioning the basics. What does pacing actually mean? What am I meant to do? What about diet? Supplements? Sleep? Attempts at activity? How do I know if I’m doing the right thing for me? Worse, am I doing myself any harm? Have I damaged myself irreparably? I’m wracked with indecision and self-doubt and that can’t be good for me of that I’m certain!

From tomorrow, my boys are on holiday from school for the next 10 days so it seems to me that the time is right for me to take a wee holiday, not from the illness itself (I wish!) but from my job of trying to recover. For the next 10 days I’m going to try to forget that I’m ill at all, put aside all my protocols and act as if we were away in a foreign country, cut off from the normal run of things. What will this look like:

• I’m putting aside my computer as if I was leaving the office. I’ll put on an automatic reply to emails and avoid all electronic contact, including my normal social media lifelines.
• I’m taking off my heart rate monitor.
• I will eat what I want and, with the exception of vitamin D and fish oil, ditch all supplements.
• I’ll sleep as long as I want, when I want, where I want.
• My journal will not record any symptoms, thoughts or ideas about illness or recovery.
• I will banish any thoughts about illness or recovery.
• I will focus on enjoying myself, just as if I was on holiday.

By doing this, I hope to return to my ‘job’ relaxed, renewed, with a metaphorical tan prepared to embark on the next stage of my recovery. I will miss my many online friends meantime but, just as with a normal holiday, I’ll be back with my boring photos and tales of what I got up to.

Resistance Is Futile

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The aftermath of my mum’s death has proved to be a period of sorrow, reflection and contemplation. A lot of sadness yes, but interspersed with moments of joy and gratitude especially to the many people who got in touch to express their sympathy. I’ve also become acutely aware of my own mortality and latch on to any stories involving illness, particularly cancer, and especially if it’s a terminal situation. Yesterday, I read about Lynda Bellingham, the effervescent actress who has written about facing up to terminal cancer. She described herself as a liver and lover of life. This resonated with me. It paints a picture of someone who cares about living their life to the full, wresting every last drop from the experience.

So I thought: what does it mean to live life to the full? Does it mean having many and varied experiences, travelling the world, seeing the sights, sampling different cultures, speaking different languages? Does it mean being successful in your work, gaining promotions and being recognised as an expert? Is it about having a successful marriage, having children or a successful social life, a wide circle of friends? Or is it about being creative: writing poetry, painting, playing a musical instrument, singing and dancing? Or is it about being kind and charitable? Does it mean being politically active, seeking to change and influence the way the world conducts its business? Or does it involves meditation, prayer and contemplation? Is it about having money in the bank and nice possessions? Does it mean having a comfortable home, a retreat , a space to call one’s own? Is it about peace of mind? Is it about embracing culture? Or having a passionate interest in sport? Is it about eating well, exercising adequately and taking care of your body? Is it about the pusuit of knowledge and understanding?

The answer is that there are as many answers as there are people. To use my favourite legal phrase: it all depends on facts and circumstances. Context is everything and it changes.

Resistance to change creates suffering. In my case, I realise that I cause myself physical suffering by fighting to do the things I used to take for granted and emotional suffering by believing my imagination about the things I ought to be doing. Specifically, I believe that in order to live my life to the full I ought to be living in a certain way. After all, I see my contemporaries doing this: going to work, raising their children, having nights out and holidays and various activities from the list above and I want this too. This longing causes anguish. All the more so because I did not choose my change of circumstances. I did not ask for this illness and I would like it removed, with immediate effect.

But hold on, isn’t it possible for me to live my life to the full in a different way, taking account of my illness rather than resenting its presence? After all, I was never going to be Prime Minister, Pope or a pop star anyway. Can I find a way to have a variety of enriching experiences, and enrich other peoples’ lives, within the context of my existence? In other words, can I reframe my life from one of loss, longing and suffering to one of fullness? If so, what, realistically, would that look like?

I think it begins with acceptance of my limitations. Toni Bernhard writes about this so beautifully in her book ‘How To Be Sick’ and I recommend a read of this for anyone trying to manage a serious illness. It’s about bringing peace to your heart, mind and soul. From there, to consciously direct my attention on what I do have and what I can do and the achievements I can make, not some mythical perfectionist ideal. Thence to listen to, and act upon, my instincts, being kind and compassionate with myself.

So, this might mean that a full life for me in any given day involves learning about the day’s events by watching tv, engaging in a social life by having a visitor or exchanging tweets, being creative by writing this blog or (on a good day) standing for long enough to make soup. Or counselling my children from a prone position. Or offering a listening ear and gentle advice. Or watching the changing seasons from my window: like an ever-changing triptych painting. Or reading and dozing, allowing my body to rest. Or taking pleasure in seeing, reading about and hearing the exploits of my friends. Or simply being: having time in peaceful solitude, untroubled by external pressures. Or being grateful for the many and varied ways in which goodness and kindness express themselves in my life.

This doesn’t mean that a corner of my soul doesn’t long to be outside gadding about with gay abandon; only that the thought doesn’t prevent me living my life, with all its limitations and debilities, to the fullest extent.

What does living life to the full look like to you?

Three Days In The Life

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May 12th marks Florence Nightingale’s birthday. It is suspected that she suffered from an illness akin to mine and thus is the day chosen to raise awareness of this most mysterious, relentless and life crushing condition: Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome. My contribution is an intensely personal one: to share the following three entries from my journal with a view to affording non-sufferers a glimpse of what life is like. The context in which these entries are set is the struggle to get from day to day and, in particular, to fulfill my family and work commitments while feeling my strength ebb away and symptoms proliferate.

Tuesday 26th February 2013

‘Oh dear. It is not good just now, not good at all. Over the weekend I had hellish, excruciatingly painful bouts of diarrhoea. Still soft this morning. Symptoms are running very high. Hyperventilation and head swimming, exhausted and uncomfortable, aching. Didn’t sleep well last night and am now in bed at 6.30pm. Meditation during the day is almost like the desperate act of someone drowning. So busy at work but achieving so much less because I’m so debilitated. Just now, head is swirling and neck, shoulders and back ache terribly. No assistants in tomorrow–yippee! Just keep going!

Monday 18th March 2013

‘There are only so many synonyms to describe how truly awful this is. I think on top of all else I’m developing a bout of sinusitis. Head so sore today, vision dissociated, tic in left eye. Did virtually no work. Aching, exhausted and now starting to feel low, bitter and sad. This spell has dragged on since January. I’d challenge anyone to withstand this. I haven’t had a single day recently that hasn’t had either grinding misery or acute scary spells. Over the weekend I did precisely nothing other than read, watch Ashes to Ashes or pick mum up. Yet I still feel so ill. So very, very fed up of this. No escape route anywhere. Life loses its joy, colour, texture and I turn into a blob. It is so difficult to perceive managing again, to feeling capable, jolly, accepting. In truth, being ill every single day really is taxing me to the very limit. Quiet frustration indeed. I have no vitality, I find it impossible to go with the flow; I’m ill, fatigued, helpless and hopeless. Yet tomorrow I must get up and do it again. Perhaps the best way is to be unthinking–the opposite of mindful–because being mindful of how I feel is simply amplifying it. Also, my craving for junk food is back with a vengeance. The crappier I feel, the more I want to eat crap food—ach, this too will pass, this too will pass….’

Friday 7th June 2013

‘It would be an understatement to say that the last few days have been difficult. On Tuesday I had no flu symptoms and managed the whole day at work by pushing it. On Wednesday, just felt really unwell, masses of symptoms so much so I said to my boss at lunchtime that I had to go home. Was wired and tired, couldn’t rest and got very little sleep. Stayed in bed and worked there on Thursday morning then went into work at 12.40. My sister drove me to the train station and I got a taxi from Haymarket to work to conserve energy. Had meetings before my committee meeting. Went to the committee room where it was incredibly warm which I think was the last straw. Within a relatively short time I felt very uncomfortable: hot, heart racing, palpitations, aching chest wishing that the meeting would be over quickly so I could escape. After a few minutes it became unbearable; thought I was going to pass out so I made my excuses and left. I ran cold water on my wrists and lay down. I had a full blown acute episode which refused to subside. Every time I sat up, the world swayed. I’d permanent burping, rigors and feelings of alarm. After a couple of hours an ambulance was called and we went to Edinburgh Royal. Got lots of sympathy for having ME but not one person knew what to do. In fact, the A&E doc asked me! Advised her–rest only. ECG was fine, BP 166/90, HR high, temp 38.5. Classic signs of my nervous system cracking up. This episode was so long–must have been from just after 3 until after 5 before it subsided, maybe even later. It was absolutely, deeply, horribly unpleasant and scared my work colleagues too. And then the saddest thing of all today. I missed Eilidh’s graduation. I got up and got dressed but that effort sent my heart rate soaring. I couldn’t risk having another episode at her school so packed Eilidh off, alone, in a taxi. Wept about it. For the next few days I won’t be far from bed–clear I need lots of rest.’

I haven’t been far from bed since. I didn’t make it back to my work. The struggle continues.

For more information, stories and poems: May12thBlogBomb

Another Fine School Day

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My car has been poorly with a perforated exhaust for around the last eight months. Almost every day I’ve asked myself whether I’m well enough to drive a few minutes to Falkirk to get it fixed. On Monday I judged the time had come to attempt it. So I set up a rendezvous with Davie the exhaust repair man and off I went.

I had been prepared for feeling anxious. During the wait, I sipped cold water in a cafe, listening to one of my favourite relaxation tracks. It was uneasy and uncomfortable but I managed.

I had been prepared for a sympathetic nervous system over-reaction. It didn’t come which was a huge welcome surprise.

What I had not been prepared for was what actually happened. I can describe it only as an inflammatory response. Starting in my head and spreading down my neck and spine into my back was a feeling of pressure and pain as if some fiend was pumping pressurised air into me. It pressed on my eyes, making my vision strange and on my ears giving me feelings of vertigo. It was as if the touch of sinusitis I had been feeling had intensified and spread throughout my upper body.

Again, in eight years I’d never experienced anything quite like this. Or, to be more accurate, I’d never watched symptoms like this develop so closely before.

It was a huge relief to get the phone call saying the exhaust was fixed.

I’m glad I tested my boundaries on Monday. I’ve both learned something else about the ways in which my body will react when pushed beyond its limits and got my car back on the road. A huge achievement set in the context of recent (non) events. For now, I’m resting to allow the symptoms to subside. Then I’ll think about my next exploit…..