Rusty Bullets

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There is no silver bullet cure for ME. Indeed, there is no silver bullet for managing the condition. Some folk recover, fully or partially; some endure ups and downs but never really get better; and some, sadly, get progressively worse. Why that should be remains a medical mystery.

I’ve read countless stories of recovery. As I’ve mentioned previously, I don’t always find these inspirational although I’m delighted for the people concerned that they have found a path to wellness. Meanwhile, I continue on my own path looking for any old rusty bullets that might do the job of supporting my body in its healing work.

Last week I had my first session of Craniosacral Therapy. This involved a fairly gentle massage of the spine and head. Immediately afterwards I felt delicious, normal tiredness. I also had a flash of insight: after all I’d suffered and endured, researched, studied and learned I was still failing in the basics of looking after myself.

I realised that I remain in striving mode, pushing for improvement, measuring, reviewing and finding myself wanting. I feed my cravings for activity and force my development. Invariably, I give more than I’ve got, pushing at or beyond my limits, often in an air of quiet desperation.

That led me to thinking about the recovery stories. What is it that each have in common? After all, they seem to be so different in narratives, symptoms and variety of drugs, supplements, treatments and lifestyle changes. I think it is this: to stand a chance of recovery you must be disciplined about being kind and gentle with your body, mind and soul.

I liken it to bringing up a baby. Who would feed a baby liquidised burger and chips, allow it to be over-stimulated by flashing images or ask it to walk and talk before it was able? Then scold it for failing to thrive?

Does this sound like the ultimate paradox? To recover, we need to stop striving to achieve it. Instead, be disciplined enough to take proper care of ourselves. For my part, I thought I had been doing just this and the reality came as a bit of a surprise.

So, I’ve paused and am contemplating the way forward. With self-discipline and gentleness.

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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

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?

Resilience

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In the past week alone I’ve had a fair smattering of life’s slings and arrows. I can’t go into much detail as they involve other peoples’ business but suffice to say that a couple were notice of serious ongoing issues, a couple involved poor behaviour on the part of folk, one or two were reminders of just how ill I am, and another was quite amusing.

If I’m honest I think that these events would have taxed the capabilities of someone who was fully fit. When, however, you are ill finding the resilience to deal with what feels like a tsunami of problems, irritations and slights is hard. Particularly with this kind of illness which interprets problems as an attack and ramps up my already dysfunctional nervous system to deal with them.

This creates an unhealthy cycle. Horrid event——-> worry/concern/debate/self-doubt——–> physical reaction: symptoms are increased, functionality decreased——-> anticipation of the next awful incident——–> greater sensitivity and decreased ability to withstand the next horrid event. When, as happened this week, there are more than a few of these in a short space, with little recovery time in between, my health suffers badly.

Resilience is a key component of good health. Upsetting events happen all the time; they are a normal part of life. How can I build the necessary resilience when I feel fragile?

Ideally, it would be good to get off the world for a bit! Given that this isn’t likely to happen, what else can I do?

• Firstly, be as kind to myself as possible. Recognise that it is ok to feel bad when bad things happen.
• Try to minimise the age-old patterns of worry, self-recrimination and doubt. Make a decision and let the situation rest. Don’t use precious energy going over and over the events.
• Rest properly using mindfulness and relaxation techniques to give my body the space and time it needs to do its healing work.
• Simplify life as much as possible; take the easiest routes where the harder would be the automatic response.
• Be open, curious and non-judgemental about horrid events; by assigning them a level of horridness I’m building in a level of reaction which, at a physical level, will translate into a huge over-reaction. Tone it all down.
• Look for help and support.
• Concentrate energy on the good stuff that is also happening. Find something to make me smile or laugh.

In other words, there is much about my external environment I cannot change so I need to adapt my internal environment to allow me to withstand life’s knocks without them, in turn, making me more ill. It is a tough and ongoing process but absolutely vital to the recovery of my strength and wellbeing.

What Am I For?

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The sad passing of Tony Benn today caused me to pause and ponder upon my beliefs and values. Shaped by my Catholic faith and upbringing and honed by my life experiences what do I believe? Here is what sprung to mind from my heart:

I am FOR:

1. I believe that each human being, born or unborn, is unique and of equal value.
2. Fairness, justice and freedom.
3. Protection of the vulnerable.
4. Fair distribution of the planet’s resources.
5. Compassion, kindness and community.

I am AGAINST

1. Abortion without compelling reasons.
2. Old boy networks, ruling families, secret societies and other forms of unmeritorious advancement.
3. Abuse of power, prevalent in such measures as the bedroom tax, welfare reform and NHS dismantlement.
4. Nuclear weapons, and indeed weapons generally.
5. Selfishness, venality and the vacuous culture of acquisitiveness and worship of celebrity.

Perhaps you might spend a moment or two today pondering upon what is important to you too?