Do You See ME Now?

25th July 2024

The road to acceptance of M.E. by Jacqueline Fromont.

If somebody had told me four years ago that I would spend 70% of my life inside in the quiet and dark, mostly alone, and that I couldn’t make it to the shop or see friends, I would have laughed, prepared some weapons and asked which day exactly would the zombie apocalypse be starting … but seriously, here I am four years on, living exactly that life. I would like to share this journey with you, hopefully to shed some light on what it’s really like to live with this condition and throw a few of my poems in for good measure.

Looking back now, I always knew I was the type of person who didn’t ‘stop’ very often. I had a child young, studied, worked. I hardly ever stood still but when I did it was due to tonsillitis, really bad tonsillitis, like multiple times a year. I would get really ill for a few weeks, then as soon as I was better I was straight back off again. I have heard many times M.E. being referred to as a person stuck in ‘fight or flight’ mode; growing up with a few adverse childhood experiences I often wondered if my M.E. was triggered by a trauma response. Was I always stuck in ‘fight or flight’ mode? Was it due to a messed up stress response? Who knows?

Denial

Anyway, the great 2020 hit us all like a ton of bricks and Covid happened. I was suddenly forced to stop, whether I liked it or not (I mean not completely: I did have two young children that needed the dreaded home schooling!), but for the most part I was suddenly stuck at home. At first I put the ‘tiredness’ down to not being as active as usual, but it soon became obvious that more was happening. Don’t get me wrong, there have been little signs of M.E., such as the throat issues and food sensitivities, for years, but it was now when I realised that it was affecting my daily life. I would find myself needing to nap in the afternoon, but again this wasn’t unusual in Covid times and I put this down to just not being stimulated enough (I mean, we could only leave the house for an hour!) but as the world reopened and more was expected of me, I soon began to struggle. As my youngest child was only little, I only worked part time. On the days I would work I would get to work around mid-afternoon and start to zone out, seek a quiet place. On my days off I would do the school run, come home, set an alarm and nap on the sofa. Very quickly I became reluctant to travel very far. I couldn’t place why I felt this way, I just thought perhaps it was the after-effects of Covid or having a young child. I just found myself ‘seeking’ out sleep whenever I could, but it never made me feel better.

At this point my previous doctors had always suggested I had slightly low iron, and so I returned to see if this was the root cause again. This doctor again placed me on iron tablets, which did nothing, so after a few rounds of my husband saying, “there is literally something wrong every day, you are never ok, you need to go back to the doctor’s”, I finally sought out another doctor, and I am very aware that I was extremely lucky in finding this doctor: I know not all of us get a diagnosis or are even taken very seriously. He listened to me for a long time and instead of fobbing me off with low iron, he actually suggested a condition called Myalgic Encephalomyelitis. I told him I had never heard of it and he said he wanted to do a full blood screening, which he did, and after they all came back fine (which they will do a lot of times, and as frustrating as this is, it doesn’t necessarily mean nothing is wrong) this doctor referred me to a special M.E. clinic. Within a few months this clinic was in touch and we had a phone call. They were very good and offered me breaks (I was just pleased I didn’t have to travel there!), they went through my medical history and ,unbeknownst to me, a lot of past problems I’ve experienced all related to M.E.: as mentioned, the throat issues, the stomach sensitivities, dizziness and sickness etc. They noted all this down, we discussed my past medical history and symptoms I had. They said they would look at my medical history and let me know if they thought I have M.E.

This is ME, now.

You crept in like a silent assassin
drawing out a small part of me
each day.
You took the light,
you took the noise,
you took the strength
from my bones.
I was suddenly made from glass.
The only question was
how long before I shattered completely,
crash,
a shell coating,
a woman that never changed,
trapped,
praying every day for the strength to
keep fighting you.
But your persistence was strong,
the wounds came fresh from my head
now, you finally burrowed your way
past the flesh.
Blurred the most beautiful point
I had always kept safe.
And this was the most devastating
blow of them all.
Do you see ME now?

2020 was also the year I was supposed to fly to Vegas and get married, but Covid soon put a stop to that! So throughout all this I had to replan my whole wedding here in England for 2021! I also got a new job, which came with more hours, and at this point I thought I would be able to cope withit; little did I know how things would turn out.

I remember the first time it really dawned on me that something was wrong; well, maybe not dawned on me, but absolutely terrified me. Yes, sure I thought I was tired but I could sleep and get better, right? There will be a medicine that can help fix whatever this thing is that is wrong with me, right? I will get better. That moment shattered when I started to forget things. I remember walking into a shop one morning: I only needed one item, did the school run, went into the shop and suddenly my mind was completely blank. I felt like I was reaching around my head trying to find what I needed; I stood there, people passing me either side, absolutely devastated: what on earth was happening to me?! This wasn’t just forgetting something, it was total and utter confusion. Why was my head not working, did I have early dementia? The term ‘brain fog’ is so accurate because you just feel foggy, like mist swirling around your head, and it’s so terrifying. I just left the shop and went home and cried; all of a sudden this was very real. I plodded on, these first two years, although things changed. I also didn’t really understand the condition or the impact of just ‘pushing through’ instead of resting, so I just kept going. It didn’t take long before I was struggling at work: my job is a busy one, working with young children; I just didn’t stop, there was no time for breaks, and as I hadn’t been officially diagnosed with anything, I couldn’t exactly say what was wrong. So after speaking to my head teacher, we decided it would be best if I cut down to three days so I could cope better.

Brain fog

The trust is gone.
It was an awful,
resentful moment.
The moment
I wandered,
Lost,
unable to grasp
at anything,
foraging
around,
desperately
scrambling,
for that
link, I knew I had
already made, not
hours ago.
Fear engulfing the
resentment,
the failure I was becoming.
Lost.
Vulnerable.
Stupid.
Blind.
I can’t quite reach
it.
The clouds too dark
in this sky.
So
is this
who I am now?

and if I can’t trust my
own head,
what can I trust?

My wedding soon came around. The day before I was sitting making up gift bags, writing on huge mirrors, when a letter arrived through the post from the M.E. clinic: there it was in black and white, an official diagnosis of M.E. There was something wrong with me, they had confirmed it . Something I didn’t know if I could ever get better from. I could lie and say it didn’t sit heavy with me, but it did.

I got an early night at the hotel and woke up super early to enjoy my day! I hadn’t quite perfected or understood the art of pacing at this point, so I just vowed to enjoy every last moment and pushed the letter to the back of my mind. This isn’t to say I didn’t struggle in the days after, because I really did. Snatching a few quiet moments here and there throughout the day so the brain fog and total fatigue didn’t take over. I’m so thankful that my wedding happened when it did, before, perhaps, the M.E. got worst, before people knew and started to treat me differently. I’m so grateful for memories like that, that were not governed by pacing or rest or naps or worry. It was a wonderful day.

Shortly after, I lost one of the closest people to my heart, my Nanna. Whether or not the grief from this made things worse, I don’t know; I do know, however, that by 2022 M.E. hadn’t just taken physical things away from me, it had taken a mental toll as well.

The Promise

They all promised
this was designed right –
the exit.
But the human body was
never designed to let
go.
There’s no way you were
meant to live on this earth
with this
hand pressing down
on your chest
every day.
No way you were
meant to search
the face of every person
you pass
just in case there was a terrible
error.
The human mind cannot
erase the anger.
It cannot comprehend
the conversations that
didn’t end,
the smile stuck and dusty.
No,
the human body was not
made to endure
a life without you.

The M.E. clinic were back in touch with a phone call introducing ‘Pacing’, a method which typically means you manage your energy to avoid PEM (Post-exertional Malaise) – basically where all your symptoms worsen or further a ‘crash’, where everything gets worse for days, weeks or months. For me these crashes leave me bedbound, not eating, needing a dark ,quiet room. ‘Pacing’, to me, seemed like such an alien concept – rest before you need to rest – like is this even possible? Especially with two children and a job, this seemed ridiculous, and to this day I don’t think I’ve mastered pacing; I’m much better at it, but I wouldn’t say I’ve got it down to a fine art! The clinic also referred me for Cognitive Behavioural Therapy, which at first, after reading around M.E. and all the theories about it being psychosomatic, I was perhaps a little insulted by. You have to remember that as I was diagnosed they had only just ruled out graded exercise as being useful! The frustrating thing about being diagnosed with an illness like M.E. is you feel like you’ve been thrown into being your own doctor, as nobody really has any answers for you and there are a hundred different opinions and options and disbeliefs about this condition … yes, major disbeliefs! Like I would choose to turn my whole like upside down, affect my marriage, my children’s lives, my own mental health, just for kicks!?

Hypochondriac

What do I need to do
to convince you
I’m sick,
crack open and split?
I see you searching
for the broken bone,
the off colour.
Examining every
part of me
for proof.
Is this really the only way
I will be believed?
Helped?
Do you know how
belittling it is
to feel this
scrutinised?
This
hopeless,
this weak?
Is it really that
incomprehensible
by the human brain,
this invisible pain?
I pray one day
you don’t have that person
standing over you,
saying
“But you look fine.”

Anger

Anyway, mentally I was declining. I was finding it hard to accept that I had to change, that this was a real, serious illness I couldn’t just get better from. I was angry; worse than angry, I felt weak, and this was something I had always associated with being vulnerable, not good enough. You had to always be strong, for everyone, for everything. Quietly I just got sadder and sadder. I accepted the CBT, as since a young child I had also suffered from Obsessive Compulsive Disorder; this combined with M.E. was THE worst combination, so fatigued you can’t see straight, yet your mind forcing you to double check the locks over and over was not a good combination. I had heard good things about CBT helping with OCD, so I agreed to give it a try. My sessions were once a week through a video call with the most wonderful lady. I had never had any form of therapy before and to say I was cynical is putting it mildly, but I was willing to give it a go. We talked about my OCD, my M.E., and how it all made me feel, combined with coping strategies for the OCD, which I still put in place today. I found it just uplifting to have someone listen to me talk about the way this illness made me feel, in a non-judgmental way. The most important thing my therapist taught me was that M.E. was not my fault. She literally got me through.

I realised the amount of guilt I had been carrying around with me was so, so heavy. I was letting work colleagues down by calling in sick; I was letting my husband down, now he had to do more; I was letting my children down by resting and not being there all time. The sheer weight of all this self-blame was so heavy, I had to learn that this didn’t make me a bad person, it wasn’t my fault and nobody blamed me for anything. It was a tough lesson. I don’t think I’ll ever be completely free of the guilt that comes with having a chronic illness, but I have to try.

Stupidly, I was concerned that my anti-depressants I was on for the OCD were perhaps having a negative effect on my symptoms; now don’t get me wrong, I don’t regret stopping them as I find the numb feeling they create hard to live with, but I do regret doing it so quickly; it’s not big and it’s not clever, folks! Do what the doctor says. After stopping these and the subsequent end of my CBT sessions, I literally sank to the lowest I’ve probably ever felt.

Depression

It was a hard few months: I just wanted to cry all the time, I stopped talking to a lot of people, did what I could and slept the rest of the time. The term “bone-deep exhaustion” was one I now fully understood. I had never felt so heavy, physically and mentally. Until one night I sat down with my husband and I just broke down. I’m so good at just getting on with things regardless of how I feel (a trait I had definitely learned from my childhood) that I don’t think even he realised quite how low I had become. I felt worthless. I felt like a burden. I felt like I was taking up space that was putting people out. Giving up anything I did for me as I no longer had the energy had robbed me of all my self-esteem, I even felt like I was no use to my children. I told him, “Everyone would just be better off without me”, and just sobbed and sobbed and sobbed. It was a hard night, one of the hardest. With this revelation and honesty though, came hope. I think even my husband, who lives with me, had struggled to understand what M.E. was. I told him imagine if I took everything you enjoy doing, even the things you don’t, all of your choices away. Imagine now you were left waving everyone off to go and live their life while you went back to bed, alone. You can’t earn as much money as you once did. You put on weight. Your hair falls out. Your arms feel like you have weights attached all the time, so sometimes you can’t even shower for long. People treat you differently, friends you thought would be there don’t have the time for you now. You wake up every day with something hurting, never quite feeling ok, just weighing up every last move so you don’t end up sick. Your life is governed by this illness, robbing you of spontaneity, just a life you live, not survive. I think from then on he understood a little bit more; not that he wasn’t absolutely amazing, he just couldn’t stand in my shoes and understand the severity of what it was doing to my mental health.

Chronic

Everyday it’s like a roulette
of symptoms.
A guessing game
of how far I
can push normality
on my bones
until they cease
to comply
with all these phony
“I’m fine”s.
The doctors never said
loneliness would
be the worst
side effect,
but it swallows
you whole.
Along with the guilt
for being such a weak
thing.
But this is where
the irony
lies,
because it will
never be understood;
the strength
it takes to live
like you.

Acceptance

I realised after this I needed to start accepting this condition for what it was, and instead of fighting it, I just needed to learn to live with it. In October 2022 we decided to rehome a little dachshund called Alfie; my husband, although not a dog lover, realised how lonely I had been getting while everybody was at school or work. This to some people might sound daft, but to the dog lovers, you know. As I write this now, he’s lying at my feet. He gets me to go out for walks when I feel able and just sits with me on the sofa when I need a rest. He’s brought so much light to our house, I really think he was meant to be. I also went back to an old survival method of writing poems; this had started as a young girl as way of dealing with a lot of things. I had forgotten how much just writing things down had emptied my head and made me feel a little better; that’s why I wanted to include them in this to demonstrate that there are positive ways of helping you through hard times. I finally collected them and put them in a book called “Secret Lights”.

I also think my body finally started to regulate after coming off the anti-depressants. I think I became more honest and less embarrassed about saying, “I don’t feel well enough today”, “I need help” (coming from someone as independent and stubborn as me, this was a big deal!). I think, before, I was embarrassed about the condition (it’s not real, it’s not a big deal, I don’t want to make this all about me when there are people out there with far more serious illnesses), but after learning much more about the condition, by joining groups, reading all around it, I didn’t feel as ashamed and I also didn’t want to make myself worse, as it was dawning on me that this was a real, possible outcome, if I didn’t pace. I think people also made a huge difference: it became very eye-opening to see people’s true colours when something like this happens; suddenly I wasn’t the one making plans, or the plans needed to be adapted for me to be able to come. Suddenly my world became a whole lot smaller, but I saw the people who did adapt, who did google the condition, who did ask me what would work for me, and I couldn’t love them any more for this! I also saw the people who would eye roll and were probably thinking, “God, must be nice to have days off work at home doing nothing!”

Yes, there will be people who treat you differently or who fade into the edges, but you will learn who you need in your life very quickly.

I bought a Fitbit and read more around pacing. After a few CBT review sessions, I heard nothing more from the M.E. clinic and still haven’t to this day! Apparently it’s a condition you can be discharged from. This is something that really needs to change: the support around having conditions like M.E. is still severely lacking; people need more than just a quick phone call and leaflets on “pacing”, they need ongoing support, mentally and physically. Throughout everything, I feel like I was left out to dry. I started to set the HR pacing app to alert me as to when I went over my higher heart rate. This prompt really helped. Towards the end of the summer term at work I began to struggle again. I worked two days one after the other and even though work had a health and safety plan in place so I could have little rests, I didn’t always rest (the guilt pressure again!). So the PEM in the following days was too much and I began to miss days at work again. After a long consideration and a lot of tears, I decided that cutting down to two days was the only option. Another blow. But I was lucky I was in the position to do that, I know some people aren’t. I am lucky I can have a few days’ rest at home in between the school runs. It took me a long time to see this as “lucky”, as I was resentful that again I had to give up more for this condition.

I think finding peace with it is the key to surviving a chronic condition. I never realised that all those years I was grieving for the person I used to be, for a past life I was angry that had been taken away from me, the days I could wake up feeling energised and just not have to think about the bloody cause and effect of every last movement!

Broken Battery

I buried a friend today.
I stood over her grave
and sobbed.
Hard, salty tears
encircling
the wood.
I remember
dancing till late,
the careless beauty of
not thinking too much.
I remember the
smile that didn’t
end at the eyes.
I remember the
family events
that didn’t have
to be excused.
I remember the
looks that weren’t
drowning in confusion
or pity.
I remember the system
I didn’t think
would fail me.
I remember the
fire that hadn’t been
extinguished by
a lack of energy.
Today I grieve.
I grieve for
my friend:

The person I once was.

I had gone through most of the stages of grief – denial, anger, depression, and finally, acceptance. I had to finally let my old self go. It took a lot. Especially while still trying to be a mum. At Christmas 2023 I had read an article around LDN – Low Dose Naltrexone – and after trying every vitamin combination under the sun, I thought what would be the harm in trying something else? These were through a private doctor, as the NHS wont prescribe them for M.E. (so not cheap!). It was a long process of gradually upping the dose every week until finally, in 2024, I reached the highest dose. Now don’t get me wrong, these are NOT meant to cure you and don’t contain magic. But what I did notice straight away was that it was helpful with some symptoms. My brain fog was much better; it was still there, but it was more apparent on days I need rest, so now I know that if I’m struggling to concentrate / slurring my words/ struggling to remember, I will rest, whereas before, it was all the time. I noticed my legs were hurting less after work (I had tried a lot – painkillers / leg compression machine / heat!) and now I use aids much less frequently. Other than vivid dreams, there are few side-effects with LDN, which I was over the moon about as I’m not a massive fan of tablet taking for long periods, but so far, my experience with LDN has been a positive one and although I still get fatigued, I find myself able to do a little more.

I am in no way an expert in pacing or managing my condition, I just found with acceptance came honesty: will I still come home and clean the house even though I should be resting? – absolutely; will I still push myself sometimes to attend some of my children’s events – definitely! But now I will manage it better.

I know people won’t always understand and that’s ok, but I will not put myself out to please them, I will not make myself sick to make them happy; it is what it is. After a massive roller coaster of a ride (that is by no means over!) I’ve learned to rest if I need to rest. I’ve learned that M.E. doesn’t make me any less of a person, that my children still see me as their mum and love me all the same (no matter if I need a nap in the afternoon!).

I’ve learned that living with an invisible illness doesn’t make you invisible.