Relentless Relapses

Sometimes I feel like a lone figure cemented into a snow globe, which sits atop a washing machine going through endless cycles.

Shaken, shards of restriction, constriction, pain and discomfort rain down and I flail about, just trying to cope.

During the pauses, the glitter settles, the water clears and I can see through the glass to the world beyond, a world I once inhabited.

I long to rejoin it in all its beauty, imperfections, joys and stresses.

So, would someone switch that bloody machine off!

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Trapped

Yesterday my GP asked me to describe my current state of health. I wanted to tell him that I feel encased in a heavy, thick, sticky substance; painful and suffocating with my soul screaming for freedom. Any effort meets with firm resistance until the only option is to lie still: a living death.

I wanted to tell him that occasionally I glimpse a bubble, a chink, a tunnel and slowly, painstakingly move towards it, only to find that beyond is an electric fence.

Instead, I told him about my headaches, exhaustion, palpitations, breathing difficulties, listed my body’s sensations. Nothing he can do; nothing I can do.

NOT ALL MONSTERS ARE BIG!

 

I’ve often imagined my illness as a huge imposing monster around whom I need to tiptoe for fear of incurring his wrath and consequences. Well…….

It turns out I am dealing with a monster, only it’s microscopic and has a name: Borrelia Burgdoferi, the pathogen which causes Lyme Disease. The chances are I picked it up by being bitten on a hill walk in 2006 and it has been making itself comfortable in my brain and nervous system ever since.

Upon diagnosis, I was elated, almost euphoric. I had an answer to my medical puzzle which made sense: I’m harbouring a bug known to evade, suppress and manipulate the immune system, wreaking absolute havoc as it mutates into various forms: spirochetes, cysts, biofilms and so on. Little wonder I can’t get well.  But there’s treatment so let’s get after these bugs!

Then the reality set in. As I read more about Lyme, I found myself through the looking glass, behind the wardrobe and down the rabbit hole staring into a pit of confusion, politics and multiple scare stories. Let’s start with something rather fundamental. It is a matter of controversy to say you have chronic Lyme Disease; apparently it doesn’t exist within mainstream medicine. Caught in its acute stage antibiotics will be administered. Left untreated for 12 years, the options are decidedly limited. Indeed, my German lab results will not be accepted by the NHS.

So, armed with lots of information gleaned from various Lyme forums and websites, and advice from my independent doctor, I decided on a course of treatment involving antimicrobial herbs. Any lingering hope that I’d had a ‘false positive’ result evaporated very quickly. At even the minutest dose of two herbs I suffered a reaction which truly defines the word ‘intolerable’. Every symptom was cranked up fiercely, I collected a bunch of new and very scary sensations and my every waking hour (and that was most of them as I couldn’t sleep) was accompanied by a pronounced feeling of being in mortal peril. It was truly hellish. After persevering for 3 weeks, I finally gave in and called in the cavalry in the form of my doctor and psychotherapist.

It’s difficult to convey adequately the fear of  being trapped with an infection which renders my life an existence but where the mildest of treatment is infinitely worse. This is truly one of these illnesses where you need to experience the full gamut of its effects to have any notion of how it feels. I’m not ashamed to say that, even after 12 years of this, I was in absolute despair: the suffering was so profound. And, from everything I had read, there was no happy ending.

Around 3 weeks after the first attempt at treatment, and working hard at it, I returned to my ‘normal’ state–very debilitated but not living in a constant state of extreme sympathetic nervous system activation. Time to try again! This time, on advice, I changed the treatment to a form of herbal tea, starting with very low doses and increasing gradually. It took a couple of weeks but again I hit the intolerable wall. This time, I stopped quickly, rested and have re-started, at a glacial pace, with even more dilute and tiny doses. Whether this will work or I’m doing no more than tickling these bugs I don’t know!

I know that the reaction I’m having is well documented as a Herxheimer reaction and there are various schools of thought about coping with it. I prefer the view that suggests it’s a clear sign your body isn’t coping with the rate of die-off and that stepping back to a level where the sensations are tolerable is the way to go.

It’s all very much a work in progress and I view the antimicrobial tea is just another addition to all the other supplements, diet, psychological care and relaxation protocols I’ve been amassing over the years. For now,  I’m in a ‘hope and acceptance’ phase, making the best of an unfortunate situation.

*With my grateful thanks to David Skidmore aka @Lymeloonies who kindly allowed me to include his wonderfully evocative cartoons.

 

 

 

 

 

 

 

 

 

GAME FACE

I wrote the following on a Facebook Group for people with ME/CFS:

 

May I share one of my pet angsts?

Folk who don’t turn up on time! Today it’s my solicitor.
I prepare myself carefully for the appointed hour. You all know what that involves. As the minutes tick away afterwards, I can neither rest nor do anything else besides behave like a meerkat sentry.
Now 28 minutes and counting…..

 

I received a lot of supportive, empathetic replies from folk who understood my predicament, the finite nature of my resources and the knock-on effect for my health. There were a couple of unexpected replies that took me aback a bit and got me thinking. One chap said: ‘ you’ve a Type A personality, google it’ and another lady kindly outlined her strategies for filling in the time when other people are late: reading, knitting and so on.

So, if this lady can calmly adopt distraction strategies, why can’t I? Is it a product of my personality? Can I make any changes to benefit me?

Normal working day

It then struck me that, for the majority of my adult life, being prepared and alert has served me very well. I’m accustomed to getting in the zone, putting on my game face and gearing myself up to respond to all possibilities. Quite literally putting on the war paint as it was a standing joke in the office that ‘Mary must have a tricky meeting today, she’s wearing red lipstick!’

Similarly, at home, with sole responsibility for 3 children, being alert and responsible at all times was entirely appropriate and useful.

And there is nothing wrong with this whatsoever.

Only, I haven’t worked now for over 4 years and my youngest is now 14 and can manage most things himself 😉

Being in a very alert state drains energy rapidly, introduces adrenaline and can be sustained for variable but always limited periods of time before I start to struggle in a variety of increasingly unpleasant ways. Then there’s the recovery…..

I think becoming aware of this is the first step to doing something about it. It would benefit me enormously to keep relaxed no matter who’s visiting and whether they’re on time or not. At the moment, I’ve no grand plan as to how I’m going to reverse decades of ingrained behaviour but I guess I’ll start on it with my next meeting tomorrow.

All ideas, comments, thoughts and suggestions are very welcome!

I DON’T KNOW HOW YOU COPE

My 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!

IF AT FIRST YOU DON’T SUCCEED…..

Keen observers of this blog might have spotted that I’ve been somewhat reticent on the committing thoughts to the ether front. Not that I’ve been entirely idle in the last couple of years, just not sure that writing about it would be valuable to writer or reader. I’ve decided to give it another go and thought I might start with a brief overview of various steps I’ve taken in the quest for knowledge, treatment and recovery. In short, I’ve employed the services of a health coach, a doctor of functional medicine, and a psychotherapist. I’ve had a number of biochemical tests, the results of which have helped me understand a few things that are amiss, some of which I’ve been able to do something about. The coach and psychotherapist have helped me deal with the enormous challenge of  managing a dysfunctional nervous system.

So, what did I discover that I could act upon? Quite a lot actually: vitamin deficiencies, mitochondrial dysfunction, food intolerances, the presence of and sensitivity to toxic chemicals especially lead and mercury, iodine deficiency, neurotransmitter imbalances, chronic infections, chronic hyperventilation and so on. It’s a source of deep concern to me that the NHS does not conduct these tests. Who can say what my prognosis might have been had mercury been identified as an issue when I raised it in 2006 as a possibility?

What steps have I taken? My diet has changed radically. It’s probably easier to list what I do eat: meat, sardines and mackerel, vegetables, potatoes, nuts, seeds and a handful of berries. I drink only filtered water and ginger tea. For a treat Ombars and Deliciously Ella energy bars. I lost over 3 stones in a year despite being horizontal most of the time. As well as being intolerant of wheat, gluten and dairy I’m off -the-scale allergic to eggs which I’d never have guessed!

I’m also on a regular supplement regime, and another one, pulsing on and off, to try to rid my body of the mercury which is stored in my tissues. I did try an infra red sauna which is highly recommended for sweating out toxins. Sadly, I had a truly unpleasant reaction and am unwilling to give it another go right now. The main thing I did was have my amalgam fillings replaced, over 4 intensely stressful sessions.

I’ve also added self-hypnosis and yoga nidra to my battery of relaxation techniques.

Am I better though? After all, that’s what I want. I think it depends on how you define ‘better’. If it’s overall function, then the answer is no. My ability to perform normal activities remains as grossly impaired as before. If it’s about coping better, having more knowledge and understanding, and being more confident in the choices I make then the answer is yes. Mostly. Largely, it remains as it always was: walking on quicksand, with no certainties, no baseline of ‘safe’ activity levels and a sense of keeping going, doing my best with what I’ve got.

All of this is ongoing. I’m due to take another test on my hormones soon and will be repeating the mercury sensitivity test. I don’t consider that the time and considerable expense have been wasted just because I am still very ill. The knowledge I’ve amassed alone makes it worthwhile. I live in hope that, over time, the small changes I’m making, or one I’ve yet to find, will finally unlock the big door marked ‘Healthy and Well’.

 

 

 

 

HOW ARE YOU FEELING?

‘I feel like I’m discovering hidden nooks and crannies in a deep, dark pit of suffering. Occasionally, I stumble upon a ladder but, after a rung or two, it gives way and the pit becomes deeper, its sides more sheer and unassailable. Meanwhile, the rescue helicopter of medical science is grounded on a sticky platform of psychobabble, ego and scandalous politics. Such doctors as are obliged to venture close peer down at me, shrugging their shoulders and shouting helpful advice: ”Work within your capabilities”, ”Don’t fight your body”, ”It’s possible to relax too much” Sometimes, they try to throw a ladder but it’s too short, or made out of gossamer. Then leave me to it. Alone. In silence. In the dark. ‘

Or

‘I’m fine’

It makes no difference.

Rusty Bullets

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.

Living Life My Way

I last left the house was on 26th November last year. Actually, November was a remarkable month because I went out twice. Both for medical appointments; the effort of which exacerbated my symptoms owing to my systemic inability to tolerate exertion. This core feature of my illness has been recognised in bold neon headlights by the Institute of Medicine in the USA. Indeed, it has recommended that the universally derided term Chronic Fatigue Syndrome be re-named Systemic Exertion Intolerance Disease. The debate is raging currently both about the proposed name and diagnostic criteria:

My gut reaction was to welcome the criteria as they fit most closely with my particular experience (especially orthostatic intolerance) but I recognise that naming a disease after its symptoms is problematic. Only time will tell where this will go but there are some promising signs that the seriousness and degree of devastation of this illness are being recognised.

Although I can’t do very much without suffering the consequences, I make it my mission to purposely enjoy what I do have and can do. I’d like to share a few of the things that brighten my days. Firstly, I’m blessed indeed with having an ever-changing spectacular view from my bedroom window. Here are a few snaps I’ve taken recently:

 

Another joy in my life is reading. My condition has to be at its most severe before I am unable to read or comprehend. I spread my reading among social media, books and articles on health or for sheer enjoyment and, occasionally, to broaden my knowledge and horizons. Among the books I’ve read lately:

The Medicinal Chef Healthy Every Day by Dale Pinnock

As the title suggests this is all about eating good, unprocessed, healthy food every day. I love it! I can’t do a lot with it though as it involves standing to prepare and cook. I have managed a couple of recipes though: chicken curry, seafood one pot (although I did eschew the squid in favour of more prawns) and a mackerel salad. Quinoa features quite a bit. Tried it; prefer rice.

Eating well so as not to stress our bodies with processed food is a good thing to do. This book has some excellent recipes to try. I just wish it came with a personal chef 🙂

Silent Pain: How Stress and Trauma may lead to Chronic Fatigue Syndrome by Helen Germanos

This is Helen’s story of her illness, soul-searching, investigation, therapies and recovery. I was attracted to reading it because it is based on Polyvagal Theory, about which I wrote a post last year. It is a hugely interesting book and Helen’s three-tiered approach to recovery has given me much food for thought. I consider it a most valuable addition to my store of resources about holistic medicine. I also want to thank Helen who has been hugely kind and generous in answering my questions, sharing her knowledge and wisdom, and directing me to sources of help.

The Last King of Lydia and The King and the Slave by Tim Leach

I love historical fiction. I read Wolf Hall and Bring up the Bodies recently, Hilary Mantell’s award-winning books about Thomas Cromwell. To be honest I found both very ponderous and tough going in places. She was rather harsh on Thomas More too which I didn’t altogether appreciate! It was therefore a delight to encounter these two books which follow the fortunes of King Croesus from king of unimaginable wealth to slave. Exquisitely written and a joy to read. The standout man of the books for me is Isocrates, a fellow slave, who gets all the best lines and wisdom.

The Girl on the Pier by Paul Tomkins

I didn’t know who Paul was or anything about him until I read an article tweeted by the ME Association which, very probably, is the best article I will ever read about ME. I then learned that he was a football writer and had penned a novel. So I decided to give it a go, having no real knowledge of what it was about but expecting it to be well written. Oh boy! It knocks your eyes out and takes a good rummage round your psyche, poking sharp elbows in tender spots. It defies categorisation somehow, possibly psychological mystery comes somewhere near. That Paul managed to write a book of this quality while trapped in the ME divers’ suit is remarkable. A fantastic read!

Speaking of football, my last homage to stuff that cheers me is the current fortunes of my beloved Celtic. I’m thrilled that we have signed the cream of Scottish talent in Gary Mackay-Stevens and Stuart Armstrong, both of whom scored (the former within 38 seconds) in the debut game against Partick Thistle the other night. Add to that a hot young Irish talent in the form of Michael Duffy and we’ve had the best transfer window in recent memory. Signing Michael also brought us a new American fan in the shape of Fr Michael Duffy who had never heard of Celtic until he got loads of tweets welcoming him to the club. He knows the history now alright 🙂

I might not be able to attend games now but my passion is undiminished. Presently, we remain in the league (first place naturally) and 3 cup competitions including the Europa. Next week sees us take on Inter Milan in a full house at Celtic Park. The last time I managed to attend and enjoy a Euro tie was against Barcelona on 7th November 2012. We won and the night defies description. It was electric, raucous and magical. I’ll finish this post about some of the joys of my life with a picture of the pre-match display from which I still have my bit of green plastic:

Self-nurturing Ideas

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