I DON’T KNOW HOW YOU COPE

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1502199311008My usual pithy reply to this oft-repeated gesture of sympathy is ‘because I have no option’ which is true and generally suffices. After all, no-one wants to be treated to a viva voce dissertation on coping with the slings and arrows of chronic illness. 

But I know you want to know, don’t you?

It comes down to just these three approaches:

Maintaining Low Expectations

I don’t go beyond the lowest rung of Maslow’s hierarchy of needs. Self-actualisation is so last century! I don’t compare or compete. My aim is simply to feel as calm, relaxed and comfortable as possible. If that has an ‘end of life’ vibe about it, that’s just how it is. I’m not ill enough to die (mercifully) but no-one would mistake my existence for living in its truest sense. Anything I manage beyond that is a bonus.

This works. After all, it’s the hope that kills you!

Relaxation

My nervous system involuntarily runs on fast-forward, like an LP played at 45 rpm. It dictates the play for every bit of me. This is exhausting, scary, uncomfortable and sometimes painful. Relaxation comprises being horizontal, breathing consciously and keeping calm. No candlelit baths and floaty music; tried that-far too stimulating.

Repeat this as often, and for as long as required, to achieve relative peace.

Distraction

Besides the distractions that come with life, there’s a real skill in finding stuff to do, or think about, that is commensurate with one’s current state of craptitude. It can’t involve much level of commitment as unreliability rules. It can’t be too boring as I’m still a sentient being. It shouldn’t be too stimulating or exciting or I pay the consequences. I fall back on audiobooks (shout out to Listening Books, an absolute Godsend of a charity), a bit of telly, spouting drivel on Twitter, and an occasional dive into Duolingo pretending to learn Greek.

And writing this, and communing with my offspring, and supporting Celtic, and looking at my garden and…..

And that’s it. Now you know!

1502199311008

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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

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!

What I Did On My Holidays

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eilidhh's 128As promised, here’s the lowdown on my break. The first couple of days were hugely relaxing, almost like a weight of responsibility had shifted .Mostly, I slept and read and ate just what I wanted. I glimpsed briefly a possibility of wellbeing. Thereafter, the break resembled a real holiday: gippy tummy and a hangover every morning!

So, what have I learned from this experience?

I missed my interaction on Twitter and Facebook but there is no doubt that without it life was calmer, with more space, and my head was clearer. Physically and mentally.

What else? For the first few days I did stop myself thinking about my health but gradually that thinking returned, not too surprising given the intense pain in my gut. I also found I was checking my heart rate. But I didn’t question myself too much about whether the things I was doing were correct or not. Forgive the pun, but I went with my gut instincts.

I tried to focus on enjoyment but the reality was that felt artificial. Either I lack the necessary imagination or the fact that I was within the same walls, with the same set of limited opportunities, made it impossible to engender any sense of satisfaction.

On the plus side, I did perform a few physical feats–emptied some boxes, made soup and….wait for it, walked to the end of my road (and back) without (so far) setting off a major setback. Might not seem much over the course of 10 days but I know the achievement they represent.

For me, trying to recover is a bit like stumbling about in a dark cave, not knowing the way out or even if there is a way out, with no-one able to guide me except the bright lights of manifold articles, stories and opinions which blind rather than show the way. Perhaps, only by living my own life and own health will I discover how to improve my lot, or, if this isn’t possible, to live as best as possible with it. My former doctor gave me a wonderful piece of advice: don’t fight your own body. Perhaps, for me, that’s the only advice I need right now.

In practical terms going forward this means:

1. Avoiding articles, stories of recovery, advice and so on and listening only to what my body is telling me.
2. Reduce the length of time spent on the computer. Enjoy quality moments and exchanges.
3. Be careful about my diet. Nothing too drastic but my gut dramas let me know that anything most certainly doesn’t go.
4. Aim for a relaxed approach to any activity; shift permanently the weight of responsibility about recovery that anchors me into a miserable cycle. Stop bloody worrying!
5. Stop feeling that I ought to be more than I am or do more than I can; go with the flow.
6. Keep testing my boundaries without apportioning meaning to any outcomes. Some days will be better than others.That’s true for everyone.
7. Continue to seek out enjoyment without guilt. Similarly, not to become despondent if nothing feels fresh, exciting or rewarding.
8. A recurring theme of this blog: practise gratitude. Make a point of noticing all the good stuff.

So there we have it. No miraculous recovery by trying to do things differently but some useful insight.

A final thought: I think the premise behind my break was right. Efforts to focus on recovery inevitably become a focus on the illness itself. When you focus on something it becomes bigger, stronger and better developed. It takes over. You identify with it to the exclusion, or suppression, of everything else about you and in your life. I think it would be in my interests to find something, ordinary or special, that occupies my attention away from the world of illness and disease, and which can be managed within my limitations. What that might be is as yet a mystery to me.

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…..

Every Day’s A School Day

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Fear, anxiety, worry, uncertainty or whatever you want to call that peculiar feeling of unease are woven inextricably into the fabric of my illness. Every day at some point I will ask myself the twin questions: Can I manage that and will that do me any harm? Depending upon the degree of my debility at the time this might relate to going to work, taking a trip out, having a shower or sitting up in bed.

This anxiety is not irrational. It is based on grim experience. It is a safety mechanism to prevent me from doing more than my body is capable of doing. I’ve found, however, that it is not always my friend and that it can make me more susceptible to the very symptoms I’m trying to avoid, described as an acute episode in a previous post

In the last week I’ve had two such acute episodes one day after another. I’d like to share what happened and what I learned.

In the first episode I was lying quietly in bed. I became aware of a tingling and numbness down my left arm which intensified. I became concerned about what this signified which caused my body to be flooded with fear and adrenaline. The more I thought about it, the more distressed I became and yet more adrenaline flooded in leading to more catastrophic thinking and worsening, alarming symptoms. Almost a textbook case of a panic attack. Only this lasted for over two hours. I tried to deal with it by remaining calm and doing relaxation exercises. Crucially, I discovered that, for me, doing this was fanning the flames as the exercises focused my attention on my body and the alarming symptoms. It was pretty desperate. At one point I got up, ran cold water on my wrists and looked at myself in the bathroom mirror. These acts of distraction stopped the flow of adrenaline and allowed the situation to calm.

In the second episode I simply did too much physically. I was out viewing houses and pushed myself beyond my body’s limits. I had no worrying thoughts. Instead a body which was exhausted, overwrought and a nervous system in overdrive. The symptoms sound the same as for the panic attack. Dizzy, swirling head, heart pounding and arrythmic, gut spasms, unease and so on but the quality was different. Each were unbearably uncomfortable but this time the key to alleviating the symptoms lay firmly in relaxation. As the episode was caused by physical activity that my body could not tolerate so rest and relaxation were the answer.

This is the first time in eight years I’ve been able to distinguish so clearly between an episode caused by worrying and one caused by physical activity. I suspect that many of the episodes I’ve suffered over the years involve elements of both. At least now I have a choice about how I will respond: distraction or relaxation.

Oh, and I had an offer accepted for a house so, all being well, we will move on 28th May. I suspect that the next few weeks will provide many more opportunities for learning!

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Ten Top Tips To Try

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I’ve heard the process of recovery compared to the progress of the first rocket to the moon which was only on track for 2% of the time. 98% of the time it was making adjustments. Those adjustments are how we look after ourselves.

The incomparable Toni Bernhard, whose writing you can read here, suggested that we ask ourselves a deceptively simple question: What can I do best now to care for myself? I’ve asked myself that question repeatedly, especially when I know I’m veering off a healthy path. One such time was last night and here are the ten thoughts that came immediately to mind:

1. Limit screen time. I’m such a hypocrite, forever lecturing my children about the perils of such while doing the same myself. It’s not difficult to understand why this is. Particularly when I’m exhausted, my brain screams at me to be entertained and stimulated. Television, Twitter, blogs etc. provide this instantly no matter how flat you need to lie in bed. This creates further exhaustion, boredom and, on occasion, distress.
2. Persist with this blog. It’s both a creative outlet and a method of charting my thoughts and progress that I can look back on. I also hope it’s of use to other folk who might be in a similar position.
3. Keep additional commitments/activities to a minimum and have days where there are none. Under-estimate my capabilities. This week I had visits on three consecutive days, each hugely enjoyable but took a cumulative toll.
4. Ingrain extended daily relaxation practices. These sessions have multiple benefits and, as I’ve said before, are the key tools in my self-repair kit.
5. Stop fretting about events outwith my control. Specifically, the fact that my house refuses to sell.
6. Continue juicing vegetables. I’ve been making a concoction consisting of spinach, celery, cucumber, green apple, lime and ginger. It’s a bit of an acquired taste but I know the concentrated micronutrient content will aid my recovery.
7. Don’t allow myself to become overwhelmed and consumed by the behaviour/reactions of other people. I need to target my energy for healing.
8. Simplify life in every way possible. Have shopping delivered, children help with household tasks, accept that good enough is, well, good enough.
9. Try some gentle stretching. My body can’t cope with much physical activity yet but keeping mobile is important too.
10. Get to sleep at a reasonable hour. Sleep a long, soft sleep and wake refreshed.

I daresay that list will be different the next time I ask myself the question. What would you list right now as the key elements that allow you to live a more comfortable life and/or promote recovery?