Emma Bentley

Bullfrog Art

My Journey: No Man’s Land

living with fatigue

Emma Bentley

CHRONIC FATIGUE SYNDROME (CFS)

According to the US Centre for Disease Control, CFS is “clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially relieved by rest and results in substantial reduction in previous levels of occupational, educational, social, or personal activities”

Essentially, CFS is an umbrella term for a wide range of conditions, with persistent fatigue in common.  The two classic variations (often overlapping) are:

In my case, the fatigue comes without many other symptoms.  I tire like other people, just much much quicker and the fatigue persists for days, weeks, or even months after the trigger exertion.

A classic measurable signature of CFS (differing from all other forms of fatigue) is that of “post exertional malaise”; you feel worse 24 hours later, rather than better.

Fukada, K et al. The chronic fatigue syndrome. A comprehensive approach to its definition and study. Annals of Internal Medicine.

MASKED DEPRESSION

When psychological and emotional stress makes a person physically ill it’s called “somatization”.  The symptoms are real, but there is no physical medical cause to be found, hence often CFS gets put into this category. Biomedical markers are now being found, such as measurements of the post exertional malaise I referred to in the introduction to CFS, and immune abnormalities found in CFS spinal fluid. 

‘Somatoform Disorder’ is the extreme end of the scale of somatization and usually there are co-existing psychiatric disorders,

Although the mechanisms are little understood, there is biological dysfunction, along with the psychological hypotheses.

Where the psychological distress is hidden to an extent, this is often described as a “masked” depression. This is common in older people, as their friends and family die.

In my case, the physical symptoms are fatigue and a complete inability to sleep.  The Self-psychology theory applies to me: anxiety connected with a threat to defragmentation or disintegration of the self.

Somatoform Disorders – For GPs & Health Professionals

Simmaron’s Spinal Fluid Study Finds Dramatic Differences in Chronic Fatigue Syndrome

ATTACHMENT DISORDER

The concept of “attachment” is rooted in childhood and a basic trust in primary care giver(s) and beyond this in a network of trustable and caring others.  This trust leads to “proximity seeking” to an attachment figure in the face of threat, for the purpose of survival.

An attachment disorder is when a child either doesn’t seek proximity, and/or inappropriately seeks proximity in other adults (often a mixture of both, as in my case).  Wikipedia describes

In my case, it may be rooted in babyhood, but not markedly.  Chiefly I displayed signs of autism then, where usually the cause is along the lines of neglect or parental absence.  My mental health issues only clearly became a clinical problem when triggered by rejection in my teens and early adulthood.  But I see it as a description of the symptoms and a way of looking at the reasons, rather than a precise pigeonhole.

en.wikipedia.org/wiki/Attachment_disorder

Chapter 1: Diagnoses

1997-2000  university & Chronic Fatigue Syndrome

2000-2004  working (part-time)

“It” started with getting run down: but getting run down by normal everyday activities. At the time, I was studying for a degree, so this largely meant lectures, socialising and shopping. And I would “yo-yo”; on good days I would run around doing things and exhaust myself, leading to bad days, when I’d do the bare minimum and rest, which would make feel better and so the cycle would continue. After a year of pinging in and out of the doctors, the receptionist knew my name and I had my first diagnosis: ‘Chronic Fatigue Syndrome’ (CFS).

This was my first no man’s land, because of the controversy over whether it’s a “real” physical illness or “ALL in your head” (it’s the dismissal of the physical symptoms I object to). It doesn’t fit comfortably into physical or mental categories.

Since then it has become officially accepted as a physical illness by the medical profession, but back in 2000 it wasn’t, so I didn’t declare it when I started work after university.  I figured that if doctors didn’t recognise it why should I!

Also, there is an illness hierarchy; at the top, physical illnesses are accepted and tolerated; in the middle, mental problems are treated with scepticism and suspicion; and at the bottom of the heap are ambiguous illnesses and physically expressed mental health problems. It definitely doesn’t help that my problems are invisible; I show no outward signs of illness.  Many people were downright hostile; I was often verbally attacked for not being able to do things and some of my family even tried to have me sectioned, when I became housebound. To a certain extent I’ve internalised this and I find it hard to take my illness and myself seriously. 

I’ve also learnt not to trust myself, because my body and mind play tricks on me, for instance when I have “false energy”.  Yo-yo-ing is a clear example of false energy, or in setbacks there’s a dangerous point when I start to feel better, but my baselines remain low.  My family also attacked each other; my illness has reopened many old wounds.

I was lucky to have an understanding doctor, though.  She told me to regulate (“pace”) everything, so I do the same amount of everything, at the same time, every day; sleep, meals and activity (physical or mental, but how emotionally draining something is must be factored in if it applies). How I wish I’d been told that a year previously! It worked! I wasn’t back to “normal”, but I could function enough to complete my degree and start part-time work.

Nov 2003 split up with Mark

we’d been living together for several years, so this was a major upheaval

Dec 2003  made redundant

stopped sleeping & diagnosed with depression

Oct 2005  diagnosed with Attachment Disorder

Garfield once said “I like to take one day at a time, but sometimes several attack me at once”. A few years later, this is what happened to me: a series of life changing events all happened one on top of another. I felt like I was stressed but coping, but I suddenly stopped sleeping – I just couldn’t switch my brain off.            


Many people who’ve suffered from insomnia will relate to the night passing painfully slowly as you are “wired” and restless and want to get up, but once your alarm goes off and you do get up you feel exhausted, and so the day drags, counting down the hours until you can try to sleep again.

My doctor diagnosed ‘masked depression’ and anxiety ie physically expressed mental health problems.  A breakdown in layman’s terms.  I began taking antidepressants and started sleeping again, though it was patchy and I remained exhausted; to such an extent that I struggled to work at all and ended up signed off sick and on benefits.

But a couple of years later, when I saw a psychiatrist, he told me I’m not depressed; I have an ‘attachment disorder’. For me, this basically means I’ve reacted to life events by detaching from the people around me and from my emotions. I find it fascinating, though, how many other people are “detached” without the ill effects and physical symptoms!

A couple of years after that, when I wound up in hospital, I was told I don’t have “classic” CFS and there’s a possibility I don’t have CFS at all.

Which leaves me in a no man’s land, somewhere between mental health problems and CFS. I don’t belong anywhere, particularly as now I’m less anxious and more drugged I don’t feel particularly mentally ill, so I’m not like other mentally ill patients (though it would seem it’s not uncommon for apparently depressed people to be rediagnosed with more obscure ailments).

I still see the CFS and mental health problems as separate, partly out of habit, partly because I’ve seemingly had each one on its own without the other and partly because mental health problems respond to exercise, whereas exercise makes CFS worse. The ways they seem to overlap are that my mental health problems exacerbate my CFS in terms of brain functioning, sleep and exhaustion; and that other people’s negative reactions to CFS make me feel more detached and anxious and affect my self worth.

But at the end of the day, my diagnoses are irrelevant in practical terms, as the treatment is the same, whatever the diagnoses.

Chapter 2: Deterioration

Aug 2006  became housebound

Jan 2007  confined to bedroom

Feb 2007  saw Neurologist

He confirmed CFS, refered me to a specialist unit in Queens Hospital, Romford (since closed), and recommended I improve my diet.

Mar 2007  stopped walking

Oct 2007 to Apr 2008  Romford ME unit

A golden rule of CFS management is to stop before you are tired / always do a bit less than you think you can.  If I do too much (as I’m afraid I frequently do) it saps my stamina. If I massively, or continuously, do too much I lose my stamina and have a setback. Often setbacks occur several days after the trigger.  A setback is when the amount I can do before I start to feel tired / ill (activity baselines) drops.  But how I overdo things isn’t related to what the setback affects and each setback is unique, in that it affects each activity baseline differently and doesn’t affect all my baselines. For instance when I overdid things brain-wise (cognitively) recently, the setback only affected my morning ablutions (I had to leave washing my face until later in the day), my talking and my blackberry usage. 

 When I have a setback, because I lose my stamina, it then doesn’t take much to trigger another setback.  And because it takes months to fully recover from a setback, it’s very likely that I’ll have another setback before I’ve recovered from the first. Thus I tend to have a run of setbacks and spiral down and conversely when I’m relatively stable I tend to stay stable and be able to increase my activity baselines, for months at a time.

But the process has the feel of a surreal game. Max Rivers (in Recovery from CFS*) describes it well; “the rules change as time goes by, getting stricter and stricter, until you aren’t allowed to do anything at all, and still there are violations that get punished and it feels like the ceiling gets lower and lower until if you stand up tall that is a violation and down you go.” It’s like being stuck in a bad dream.

When I have a setback, the list of things I should do builds up and I feel under huge pressure to do them. For instance, around when I first became housebound these “shoulds” were mainly medical appointments; I should get a blood test, I should see the dentist, I should see the neurologist etc. There’s also a really dangerous point when I start to feel better, but my baselines remain low i.e. I have false energy. This is the point where I often squeeze in a “should” and have another setback.

Going downhill in 2006, I reached a point where I couldn’t manage washing up or cleaning; so I had to have carers. But I found carers exhausting and as a result I rapidly spiralled downwards.

*Barton, A (ed). Recovery from CFS 50 personal stories. Author House. 2008

AT MY WORST

It affected every part of me: mind, body and spirit.  Everything was exhausting.  For instance, the only way I could manage my morning ablutions was to spread them through the day – I was washing my face at four in the afternoon!  I felt ill and completely drained 24/7 – I would wake in the night feeling ill and be ill in my dreams. 

I particularly struggled with mornings; it took me two hours, two alarms and some very gentle stretches before I could even sit up.  I lacked the energy to get dressed and I had to be washed by carers.  Carers cooked for me.  Carers and my aunt did my shopping.  I wasn’t easy to care for, because I couldn’t talk and because I had Irritable Bowel Syndrome (IBS) so badly that even water at the wrong time gave me cramps.  I also found it difficult, physically, to eat – using my arms felt like the game where you have to pass a wire loop along a piece of wire without touching it.  Or like doing something fiddly above your head.

I didn’t wear my glasses, because I couldn’t cope with the visual stimuli (which had amusing side effects; what’s that pink thing? Oh it’s my fingers!).  I cut my fingernails at a rate of one a day.  I couldn’t talk to my carers, write, or read.  I gave my aunt ‘Power of Attorney’, so she could manage my affairs and she kindly typed (and retyped!) a rota for the carers. I made little notes for carers by cutting words out of packaging and magazines and my doctor kindly filled in the DLA benefit form.

Because I could barely talk and all my energy went into carers and shopping lists, I had no quality of life; I was just (barely) existing and I didn’t want to be alive.  I didn’t know who the prime minister was, as I didn’t have the energy to ask.  I couldn’t cope with visitors, so I didn’t see most of my family for a couple of years. 

As anyone who’s done a sponsored silence will tell you, not talking isn’t as simple as just shutting your mouth.  I compensated with sign language, but not being able to communicate made me feel like the lowest form of pond scum.  It also meant I often went without things.

I was light, noise and movement sensitive, so I only opened the curtains a little bit, for a few hours a day and when I went into hospital the constant noise would sometimes reduce me to tears – it was like nails down a blackboard. 

I couldn’t walk, so I was almost bed bound and I couldn’t crawl because I didn’t have the strength in my arms, so I used to move around my bed by rolling or waddling on my knees like a duck.  All of the above led to knee and hip problems. 

Also, there’s a joke that goes “what sits at the bottom of the sea and shivers?  A nervous wreck!”.  I was like that – I was so tense and anxious I used to shake uncontrollably (though I couldn’t tell anyone in case they sectioned me!).  My anxiety stemmed from the feeling I was sliding down a hill; I could see what was at the bottom, it was terrifying and I couldn’t see a way back up.

The strange thing was, though, I wasn’t particularly bored, in spite of spending most of my time doing nothing. I think this was because I only gradually got worse, so I gradually got used to it.

A DAY IN HOSPITAL

I would drink set amounts of water at set times, so as to only use the commode at times when I had the necessary energy.  I would spend an hour waking myself up with very gentle exercises, then eat my breakfast.  After breakfast, I would wash either my top half or my bottom half.  Taking into account rests between all of the above, by this time it would be time to eat again (nuts and berries) and fill in the menu card (using sticky labels as I couldn’t write). 

Then, after a rest, it would be time for a 10-15 minute therapy session or activity.  This increasingly meant small activities like opening a parcel, or tidying my bed table.

After lunch (tuna and vegetables), I would do a meditation (usually not very well, due to the constant noise!), then squeeze in making a greetings card.  After a rest, it would be time for another therapy session or activity slot.  After a snack (salad) and a rest, this would be followed by another therapy session or activity slot. All my activity slots were in the middle of the day because this was when my activity levels peaked and because this was the only part of the day when I had energy to spare (getting up filled the early part of the day, winding down took up the last third of the day).

Then I would start to wind down, by listening to music and washing my face, before tea (carbohydrates and vegetables).  Around 6pm I would pull the curtains completely around my bed space (I would have them closed except for a “doorway” during the day, as I couldn’t cope with the stimuli of having them open) and put sunglasses on, to signal to my body that it was nearly time for bed.

After supper and cleaning my teeth (going over them twice to compensate for not being able to brush them in the morning) I would go to bed around 8.30pm – wearing earplugs and an eye mask (they didn’t turn off the lights at night). I would be ill in my dreams (whether it was people jabbing me with needles or just realising I couldn’t do something because it involved walking) and wake every hour or so.

Ever fed up of trying to explain time and time again what M.E feels like, why you can’t “just pop to the shop” or “down the pub”?
This is an edited down version of one lady’s explanation (the original is twice as long) when her best friend wanted to get beyond the medical definition of Lupus, and understand what chronic illness FELT like, not physically, but what it felt like to be sick. 
As Christine was in a diner, she grabbed all the spoons she could, thrust them at her friend, and said “Here you go, you have lupus”

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

At that moment, the spoon theory was born…  I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said “No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained that I didn’t even bother to add into this game that she was so nauseous that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that … the difference between being sick and healthy is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”… [but] I see this as a blessing. I have been forced to think about everything I do. [The Spoon Theory] isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general.

Chapter 3: Recovery

Apr 2008 to November 2009  Oakdene rehabilitation unit

Oct 2008  first outing

Jan 2009  gained “independence”

June 2009  started voluntary work

November 2009  released back into the community

When I split up with Mark and was made redundant, I lost my identity and sense of self, because they made up a large part of how I defined myself.  I’ve had to redefine my sense of self, using my personality. For example, through NLP metaprograms I’ve come to realise that who I am by nature is very different to who I’ve learnt to be by nurture.  For instance, by nature I’m absorbed by the here and now and details; whereas the “shoulds” are about what’s next – I’ve learnt to plan and seek a broader perspective. 

I’m learning to play to my natural strengths, rather than fighting them, because using weaknesses is more draining.  For example I need to keep things simple, and just do one thing at a time, when I’m cooking.  And I’m a jack-of-all-trades; which suits PA or one-person-office work, rather than a more specialised job, like I was doing before.

I’ve also discovered that using a ‘Blackberry’ to email people suits me, because I can do it in small chunks, (as I think of things) and from my bed.

Doing craftwork, when I couldn’t do much else, kept me constructively occupied and was detailed which suits my personality.  It also allowed me to switch off for a while – something I’d not been able to do before.

Now I can’t rest actively I’ve had to get used to my own company and learn to occupy myself mentally, rather than physically. I’m gradually learning that I’m not that bad a person that I need to run away from myself and becoming more comfortable in my own skin, especially since I turned 30.

I’m also learning to use my subconscious, again rather than trying to surpass it, e.g. using my instinct to tell me when I push myself too hard and am overdoing things; or when I’m seeking a piece of information I know is somewhere in my brain it will often come to me later if I leave my brain to ruminate.

All in all, psychologically it’s been an opportunity to learn and to rebuild myself, more sustainably, starting afresh.

And I find I now have time for little things and to think and for me time.  I’m now quite content to have cleaning as an important activity in my schedule and popping out to the Co-op as the highlight of my day!

Physically, in hospital, they gradually acclimatised me to resting lying down, so I now rest flat on my back, not moving (unless I get an email – ho hum!), for 25 minutes, which means I get a better quality of rest.  They also got me walking and washing myself again, literally one step at a time, by setting weekly goals, increasing each activity by about 20% each week.  I still pace myself and alternate activity and rest, but CBT has taught me to spread my energy through the day and my current physio believes in smaller (10%) weekly goal increases; all of which has helped me stabilise.

Cognitively, I paradoxically had to take a step backwards before I could move forwards, because I was carrying on past the point of exhaustion.  New medication may also have helped.

My sleep, sensitivities and IBS have all improved naturally, as I’ve got better (and in the case of the IBS since I cut out wheat).

ADAPTING

There’s a saying; “if life throws you lemons, make lemonade” and I’ve found a variety of ways of getting around things and making the most of a bad hand.  I’ve also decided against being “normal” and doing things the “normal” way, which definitely makes life easier.

For instance, if I get straight out of bed in the morning I “crash”; my body and brain shut down and I have to go back to bed.  But I’ve found some very very gentle yoga stretches, which help me get up gradually e.g. wiggling my toes and flexing my ankles while I’m still lying down. Similarly, breakfast is too much of a shock to the system early on, but I need food for energy; so I start by drinking, then progress onto fruit, then move onto nice mushy weetabix. 

As I only have energy for one bit of cooking OR cleaning per day, I’ve had to minimise what needs doing.  For instance, I cook large batches of food and put pans in the fridge when I’ve made something.  When making lunchtime soups I cheat by using frozen vegetables, whereas for tea I cut up fresh vegetables but cheat by using couscous

I’ve discovered that as I’m partially ambidextrous I can rest my right arm by switching to using my left arm, then switch back when that gets tired, for instance when brushing my teeth.

A DAY ON GAINING INDEPENDENCE

I still have to drink little and often (I still get very thirsty), but I can walk to the toilet no problem, so my water regime is more relaxed.

I can manage a quick shower now and wash my own hair.  Getting up takes less time and I get up a little earlier, so I’m now ready to go out by 9am. I usually get a bus somewhere and walk up to half a mile.  Once a week, I do 50minutes of a drop in IT course.  When I get back, I like to catch up on the news on my Blackberry (sitting out in a chair, where before I’d have had to do it in bed).  Later in the morning I usually have a therapy session (up to one hour long) or do some kind of cognitive activity and brush my teeth (now I have spare energy in the morning).

Either late morning or during the afternoon, I cook (a batch of soup or couscous) or do a bit of cleaning.

After lunch (lentil, soya and vegetable soup), I do a meditation (more successfully now it’s quieter!), then cycle on my exercise bike for 10 minutes (feeling like a hamster on a wheel!).  After resting, I then read for an hour (again, sitting on a chair).

I don’t need to wind down before tea (vegetable couscous) anymore.  Afterwards, I write a couple of sentences, before dimming the lights around 7pm.  I also go to bed a little later (9pm) and now, fingers crossed, I generally sleep like a log!

A WORKING DAY

I now go out twice a day: once for a maximum 2 mile walk: once for a maximum 2 mile cycle.

My morning outing is now more purposeful; I spend the first half of the morning either doing a course, or doing voluntary admin work, for an hour.  And its so nice to be out and about and doing something useful!  I’ve started a super-flexible-distance-learning course, for a Diploma in Business Writing (hard work, as I’m having to unlearn and rethink the way I’ve always written).

The most noticeable difference (to me), though, is that I’ve rediscovered boredom and if I’m not careful I thus spend my “rests” surfing on my Blackberry.  This doesn’t use much energy these days, but it definitely isn’t quality rest!  I’m having similar self-discipline problems studying for my diploma.  But at least that means I’m motivated (just by the wrong things!)

And I’ve started feeling drawn to someone.  But I don’t really have the time or energy for a relationship.

Yesterday I went to the local Hampshire Friends with ME group.  It was nice to be with people with similar norms to mine.  Topics of conversation included pain and lack of understanding from doctors.

Most patients with a neurological version of CFS (ME) tend to suffer from pain and unpleasant nerve sensations.  One lady described how, on calling the doctor out because she was in so much pain it was preventing her from sleeping, the doctor told her she was depressed!

This is in spite of the fact that the medical profession now officially recognizes CFS.

SEIZE THE DAY, THE WEEK, AND THE MONTH

November 2010 to 2013 Acupuncture with Nigel

January 2011 to 2013 Osteopathy with Laurent

I “accidently” started seeing an acupuncturist, Nigel, as far as it is possible for someone who hates needles to accidently ask someone to stick needles in them!  I went for pain relief and he slowly got my rest and medication needs down.  But then I had to increase them again…

I decided to use Christmas to level out my walking and cycling activities, as I’d got into a bad habit of doing a lot one day then compensating by doing very little the next day.  I knew it was draining my energy reserves. But when trying to level my activity I set the levels too high; which quickly triggered a setback; which triggered sleep problems; which triggered more setbacks.  Thankfully only physical setbacks so far, but I’ve become almost housebound in the space of just a month.

In desperation, and knowing that Mel’s (acupressure) massage cleared by physical “congestion” I decided to try lymphatic massage; ‘The Perrin Technique’ with Laurent, an osteopath who’d crunched my back previously.  Who, it turns out, understands the psychological factors perpetuating CFS.

And yes, not listening to your body (banging your head against a wall you know won’t move until you stop banging it) is top of the list!  I’m learning to rest when my energy drops, instead of when I’m desperate to, and I’ve figured out that the nausea is a sign of passing from tiredness to exhaustion (easing with acupuncture and rest now) and the anxiety is a sign of not addressing issues as they arise.

Next I have to tackle the “living several days at once” [note from Laurent: or several hours at once!].  I’m a terror for not being able to put something down and leave it be until I have the time and energy to pick it up again.  So the “so many things to do, so little time” pressure builds up in my head and makes me tense, which wastes precious energy.  It feels like being left in a room with a bar of chocolate you’re not allowed to eat: you are aware of its presence, even if you are lucky enough to have something else to do!

I suddenly remembered though, talking to someone else with mental health problems, that I used to say to a health worker “I just feel flat”.  I’ve since become happy –without noticing!- so I know now that my physical problems aren’t due to low mood (though my cognitive fatigue may be).  I find myself singing, thanks to my neighbour and Dr Wear, though “warbling” describes it better as I’m pretty tuneless!  The trick is a) to start gently by humming and b) if you DON’T sing along to music you sound less out of tune.  If you want something REALLY challenging, though, try singing a ‘positive affirmation’ like this one.

Positive Affirmation

To the tune of ‘I am Sailing’ sing:

“I am healing, I am healthy

I feel better day by day

I am healing, I am healthy

I feel better in every way”

Now my mental health has improved, the pressure in my head is immense:  I desperately want to do a quilting course.  And a screen printing course.  And get a bloke of my own.  And a cat.  All of which individually are out of my reach at the moment, and done together might prove a challenge too far!

Getting a cat and a bloke would require taking on responsibilities, which seems for me to be the third psychological hurdle I face.  Sometimes it’s easier to blame the pressure in my head than to take the driving seat and say “No”.  Similarly, overdoing things is also easy to shift the blame for; too much to do and too much pressure to do it.

Nigel pointed out one day that “my health has to be my priority”.  I instinctively opened my mouth to argue, then with a little thought realised that nothing is more important than my health, although I tend to prioritise my activities and other people.  Which is ironic, as the only way to have more energy for my activities and other people is to first prioritise my health so I get a little better!

EXERCISE

In every cell in our bodies there are mitochondria.  They are what produces energy for ALL our body’s functions, large or small.

So it’s not surprising that they seem to have a role in some people’s fatigue / CFS.  Not everybody’s – as I said in the introduction CFS is a range of conditions with fatigue in common.  However they seem to play a role in mine.

I’d already tried a supplement called Co Enzyme Q10 (CoQ10) but a friend of my mum’s said standard CoQ10 (ubiquinone) isn’t a form readily useable by the body.  Your body has to convert it to ubiquinol, and if your body is struggling to produce energy it won’t necessarily convert it.  But you can buy ubiquinol (the “body ready” form).  And now even a water soluble version (rather than fat soluble), which aids absorption further.

After a few months on ubiquinol I’d not noticed any changes, so when I reached the end of the bottle I stopped.  And came down to earth with one heck of a bump! It seems the changes were really really gradual, but there.

So we came up with a strategy: a month off it, then mitochondrial blood tests.  These are only available privately, but my disability benefits were up for renewal so I checked and with doctors’ support the results would support my claim.  The benefits money I was getting would pay for the tests and ubiquinol.  I was shaking when the results and medical report came through from Dr Myhill.  Sure enough, the test results were – for the first time in years of tests – abnormal!  Where 100% is the lowest end the “normal range” my mitochondria were producing 40% of this expected level of energy.  This reflects pretty accurately my observable energy levels.

After another 6 months or so on ubiquinol the nausea was only an issue if I overdid things.  And when I overdid things it would usually be days rather than months before I recovered, so I was relatively stable.  Where I am now playing Snakes and Ladders, before I was playing Snakes without Ladders, as Anna Lyndsey describes her extreme light sensitivity (in Girl in the Dark*).

Amazingly, I was also ready to exercise!

*Lyndsey, A. Girl in the Dark. Bloomsbury Circus, 2015

PILATES

March 2015 to present Everybody Pilates

My first attempts were pretty pathetic and destabilising.  I booked 1 to 1 sessions at a specialist Pilates studio, took a banana break halfway through and focused chiefly on trying to pull in my tummy, with mini breaks between each stretch.  At the end of 50 minutes I was shaking so I could hardly stand up.  I did this twice a week and in the third week my stomach muscles kicked in.

After a few months they found me a “buddy” with arthritis, and after another few months they turned my Tuesday and Thursday 11am Slots into a “slow and steady” class for people with limitations and absolute beginners.  I’ve now been doing Pilates a year.  I’m now the one who knows what they’re doing and can do most of the exercises with a few adaptations.

AS A RESULT

There are no Pilates classes in the afternoon and with getting there and back it takes up the whole morning.  So I’ve totally re-jigged my day.  I now have a relatively “normal” morning, where I go out most days, then I spend the afternoon resting in bed.  My body accepts this and it gives me more freedom as I’m not diving out between rests.  Because of the CFS I still have to rest AT the same time and FOR the same time (more or less) everyday, so that my body knows what is expected of it and gets the same “essential repairs” time.

Chapter 4: Surfacing

April 2015 to present – In a relationship with Tim

PSYCHOLOGY

It feels like a parasite, tailored to me, has taken over my body – like something out of ‘Red Dwarf’.  The form my illness takes reflects my psychological profile.  Most obviously, I am very introverted and my health problems mean I struggle cognitively / dealing with people to an unusual degree.  It’s also changed me; I’m emerging as a different person and it’s become part of me and who I am.  I learnt to accept and embrace it.  As Gretchen Brooks Nassar (in a Call For Soulwork*) puts it “you can accept where you are and still want to be somewhere else”.

But getting into a relationship has finally brought my mental health problems to the surface.

I have always been very introverted, but it was exaggerated by my parents’ destructive relationship and then masked by trying to be like my peers in my teens and twenties.  And my mum’s mental health problems and negativity clearly had a huge impact on my own mental health.

I am still a chameleon around other people (brilliant for secretarial work!), though I detach and shut down when I feel at all threatened.  I had autistic traits as a child and – like many girls on the autistic spectrum – I have adapted my behaviour to mirror that of those around me and was never diagnosed.  This clearly pushed who I actually am well below the surface, so that it was not apparent even to me what my psychological issues were.

*Brooks Nassar, G. CFS is a Call For Soulwork. Cold Tree Press. 2005

NEGATIVE THINKING PATTERNS

Because of having negative relationship examples, and because these negative examples were reinforced by my mum, in relationships I expect the past to repeat itself.  I catastrophise that all my relationships will ultimately fail; it’s just a case of why and how far in the future.  My early relationships were doomed, as everything triggered a flight response.

Fast forward to 2015, 12 years after my breakdown and after 10 years of choosing to be single and focus on myself, and I made a conscious decision to start dating.  After a few months, I unexpectedly found myself in a relationship with a near perfect match.  But I felt I didn’t deserve a tim, and I couldn’t see what he sees in me; “Tim is a good person and I am a bad person; eventually he will see who I really am / I will surely show my true colours!”.

A year on, we are still solidly together and so far have managed to talk our way through everything life has thrown at us.  Our personalities are amazingly similar, so we find it easy to talk about most things.  He often understands me better than I do, and he can see when I am trying to do too much.

With the help of a Relate councillor, I have realised I am negative, judgemental and unrealistic about myself and my body.  And I blame myself for my mum’s treatment of me.  Her passive aggression triggered a flight response, so I feel I should have been able to respond and react rather than shutting down.

My relationship with Tim is remarkably positive, as we were determined from the outset to make the most of finding a 97% match.  So, like a lump under the rug, the effects of my mental health issues are instead affecting the CFS, in the form of self sabotage.  I have gone back to yo-yoing and denial of the illness.  Not accepting it of course involves negativity and judging myself harshly again for not handling it better.

CHANGELING: A SPIRIT OR FAIRY CHILD SWOPPED WITH A HUMAN BABY

Wikipedia; changelings

Historically, babies with physical and developmental problems are thought to be fairy children secretly swapped with a human baby.  Like a cuckoo, they are a drain on family resources; causing mayhem and a threat to the family.  “In particular, it has been suggested that children with autism would be likely to be labelled as changelings, due to their strange, sometimes inexplicable, behaviour.  For example, this association might explain why fairies are often described as having an obsessive impulse to count things like handfuls of spilled seed.  This has found a place in autistic culture.  Some autistic adults have come to identify with changelings (or other “replacements” such as aliens) for this reason and their own feeling of being in a world where they do not belong and of practically not being the same species as the other people around them”

I identified with the changeling in folklore, when the concept came up at school.  What I didn’t know then, is that it’s traditionally been used to describe children with physical and/or developmental problems.  I had autistic traits as a baby and although – with coaching – I had basically caught up by school age, I was still a misfit socially and I have always plodded along and got places in my own way and at my own speed.  This is also why I am very driven; my brain rarely stops because then I get behind and can’t catch up!  So I now live a life of extremes; whirling round getting things done or lying down – thinking.

The driven-ness has been exaggerated by my illness.  As I heard a blind person comment; you are either an object of pity or an inspiration to others.  So I am always trying to justify my existence.

And the exhaustion means I need a lot of rest time – however much I battle it – when my mind is free to wander relatively unhindered.  And the need for what I call “active inactivity” or “focused unfocus” (I think it’s an NLP concept?) when my hands are occupied by artwork.

Art (and writing such as this narrative) is a powerful form of expression / expressing who I am.  I’m naturally poor at verbal communication, so I have always struggled to be understood, and since the breakdown I have struggled with figuring out my identity.

When I was confined to bed, I started folding paper from envelopes and cutting out snowflakes with nail scissors.  It was something positive and creative (when my life was entirely focused on the basic necessities) and I had an end result to show for it.  It was powerful, because I was making something beautiful from something mundane; finding life and light in the everyday – and without any help.  From there I progressed to a tartan rhino, then craft courses and greeting cards and finally art courses, including life drawing; which was the real game-changer in terms of expression.  I discovered that I could draw big confident line drawings of nude ladies.

Posted on August 29th, 2019