My Story with ME/cfs

I’ll admit I’ve wrestled for quite a while with whether or not to put this on my blog. But when asked by a fellow blogger what ME/cfs is, realised I have skirted around the subject some what. I’ve decided it makes some sense to explain, so here goes.

ME/cfs

Myalgic Encephalomyelitis

aka – Chronic Fatigue Syndrome

I hope the paragraphing helps. If you’re feeling delicate, I suggest you leave it for reading at another time. 

This page is a work in progress and continues to evolve as I gradually remember detail and summon courage to add it.

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ME/cfs is categorised as a Neurological Condition by the World Health Organisation. 

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My History in brief pre-MEcfs

I think I have had some fatigue issues most of my life, past toddler hood that is. I had masses of energy, but was always the one who threw up on long journeys.

On one particular journey through France & on to Spain by car which took 3 days, I remember asking my mum if we could stop one night longer before another full day of travelling. I was just so weary & felt ill. I was about 10 years old at the time. I think this was my first real awareness of fatigue, apart from during childhood illnesses.

My childhood was fun, but also challenging, which I suppose most people’s are, in some way or another.

Was extreme fatigue something new?

There have been various phases of exhaustion during my life, after surgery in my 20’s to try & repair the damage done by BTOS (Bilateral Thoracic Outlet Syndrome) I couldn’t hold a cup! It’s still quite a problem.

Post study, career moves & stresses of life, but not on every occasion. I’d say I’m a good coper.

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When did MEcfs appear?

The exhaustion started to rear it’s head again in my early 30’s, whilst I was living in Asia with my husband & children. Life there was a wonderful experience, along with challenges which I won’t go into. There were other factors too, pesticides, pollution etc.

We settled back in the UK in my late 30’s. This process was more stressful than I had anticipated. We had packed up our life in Asia and I was heartbroken to leave my friends.

I was pretty under weight, but doing ok. I resettled our family & continued to be very busy. Overlooking the fact that the wonderful support network I had been a part of in HK, was not with me in the UK.

But I developed new, and thankfully had maintained some long-established, friendships. These were to be priceless.

I was a busy person

I secured a job, (which I mostly enjoyed). Juggling motherhood, running a home, walking our doggo, worship life, singing/entertaining, amateur musical theatre, volunteering etc (I liked to make the most of time). I had made plans for the future. I was happy.

Then some more life pressure.

One of our children had a period in hospital. Not long after that my father passed away unexpectedly. It was a shock and so painful. My sibling had a car accident. Thankfully unhurt. I nearly passed out at work when I was told. We moved home.

I increased my work hours. Well you would, wouldn’t you?

Then in 2003

I started to get really weary. I sought advice from my GP, who wasn’t at all concerned. I ploughed on. Big mistake!

In summer 2004

I had a very bad cold prior to some time off from work. It wouldn’t shift. I went to see a GP again. Nothing. Take supplements containing copper was the only help suggested. I dragged myself in and out of that consultation, then dragged myself back to work. Strangely enough the same Doctor came into the library where I worked and saw me drag myself to the counter to check their books in. Any recollection of me was not there.

Then the crunch!

On my son’s birthday in 2004, ME hit, full on (although I didn’t realise at the time). I had what I thought was a virus, then became infection, went to bed, after barely being able to walk in the park on that day & wham!! That was it. All system shut down. I was 41. I’m now in my late 50’s. My body basically said, enough is enough. I have no more to give.

I then developed a kidney infection.

It later transpired that I also had a very serious pelvic infection which went on for months undetected. Because no one believed how much pain I was experiencing. I cannot put it into words. But searing hot daggers comes close.

A hospital Dr (who I think was phsychology connected) dismissed it. And went on to ask me ridiculous questions such as, when was the last time I had intimacy with my husband and how many hours did I work.

Even though I was below 8 stone, couldn’t function, eat, work, or barely walk. Another opportunity missed. I sat in front of Doctors pleading with them to do something. It went on for months. Like a game of cat and mouse. As my health continued to decline and I eventually lost my job, far too ill to return.

The infection was only finally detected because I requested an ultrasound. I knew something was wrong. The wonderful and extremely thorough technician rang the alarm bell, telling me that this needed to be attended to without delay. I was still met with disbelief, even though the scan detailed everything. To say I was angry is an understatement. But I didn’t express it. I am so grateful to that technician, and the many others, who really know their stuff.

I had over 54 medical appointments in the first 12 months. Without diagnosis of what was wrong.

Having to assert my needs, and almost sobbing when hospital tests were finally initiated. There were so many problems, the GP didn’t know what to address first. I thought finally, we’d get to the route of the problem and I would be on my way to recovery. I couldn’t have been more wrong.

My immune system went on to take a battering with antibiotic, after antibiotic. Infection after infection. I still have the list of those meds I cannot tolerate always to hand.

Then all  the ‘wonderful’ symptoms began! 

• The vile fevers, drenched in sweat,
• Horribly vivid dreams,
• Endless acute nausea, and I mean endless. All day and night for weeks, months and years.
• Insomnia day & night (still happens).
• Night horrors. I went weeks/months on end barely sleeping at all. The sleep problems have continued.
• Acute pain, which went on & on, and which is now kept under control (most of the time, but not all) through medication and rest.
• Additional pain, akin to being stabbed with a protractor.
• Body tremors (still happen). They really are disconcerting. Your whole body vibrates.
• Neuropathic twitching (which is vile, disconcerting & exhausting).
• Acute emotion and insecurity, fear, crying all the time.
• The indescribable weakness throughout body and mind, was totally alien to me. And to be honest, still is!
• Not tolerating noise, light or glare, touch, smell, (these 4 still happen).
• Clothes felt like lead and often still do.
• Grainy eye sight.
• My hair fell out.
• My skin turned yellow.
• My nails stopped growing.
• I couldn’t eat.
• Acute gut disruption for years.

The list goes on.

• Loss of balance.
• Further weight loss.
• Acute weakness.
• Breathing difficulties.
• Heart palpitations.
• Horrendous brain fog.
• Cognitive problems.
• Sensory overload.
• Light sensitivity.
• Spacial awareness problems.
• Clumsiness.
• Loss of balance.
• The so-called, tired but wired, went on and on.
• ‘Brain burn’ as I call it, like your skull is on fire on the inside.
• Weeks and months on end stuck in bed, barely able to function. I basically existed. Crash after endless crash.
• Barely able to speak, my singing voice and physical strength were trashed. I LOVED singing. I can occasionally manage one verse, quietly.

Then what?

I fought and fought through it, along with test after test and kindness from my GP. I retrained myself to eat, morsel, by tiny morsel. Finding any food I could tolerate. Then ever so slowly started to add minute amounts of supplements into my diet (that took years. I am not exaggerating).

Some medicines have helped with the pain, and B12 injections enabled me to read again after 7 years of not being able to. I could barely speak and my voice was a whisper for years. My speech was slurred and still can be, I called a pencil celery (words still get muddled & the wrong ones come out), I couldn’t read or write. Both are still a challenge.

My face was numb on one side, which still happens and is an alarm signal. I couldn’t listen to anything either. Memory problems & not remembering what someone just said to you. My speech is still weird.

I couldn’t wash or shower (still a major obstacle) & sometimes couldn’t pass water. It was a living nightmare. I needed Osteopathy on my back, as due to being bed bound so long my disks started to slip — agony, along with massive muscle spasming.

I’m being honest when I say, sometimes I can hardly believe I survived it. But I did and I carry on. Thanks to my faith in God, my dear, dear husband (who has to had to fight my corner and shout my corner and still does), my children, my dear friends (four in particular), my family (especially my mum), my GP, two Neurologists, two Occupational therapists and a number of test technicians. And ultimately dogged perseverance.

Sadly, MEcfs doesn’t give up and stop there.

Each day of MEcfs life presents new challenges. So the need for medical appointments and tests does not suddenly cease. You just hope that they may be less frequent. Even more sadly, there are never definitive answers. Your body is irreparably changed. It is a case of trying to hang on to and maintain what is left. That is a challenge in itself. And often a heartbreaking one.

I was told around 2010 that I was young enough to recover. By one of the few ME Specialists in existence at the time. It still hasn’t happened. The same Consultant who had backed specialist inpatient treatment. Which my husband fought my case for, but it came to nothing as MEcfs treatment pathways were dismantled. *GET and *CBT were being dished out and have caused untold damage to ME sufferers. Myself included.

I won’t going into that now. But suffice to say, that we all await the day for the truth to out. But progress has been made in the fact that GET and CBT have been removed as treatments for MEcfs from the draft *NICE guidelines. Massive thanks go to the many advocates working tirelessly to ensure this decision is stuck to.

You can read a bit more about that here – https://hopefoundinme.com/2020/11/11/get-lost-farewell-to-graded-exercise-therapy-for-uk-me-sufferers-hopefully/

So it is vital to keep speaking on this subject, in the hope that the newly diagnosed will have more hope of recovery and not be left to face decades of uncertainty and dreadfully poor health.

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Where to from here?

I still have severe ME & have to manage my life ultra carefully, but many sufferers are affected far more severely and remain bed bound in darkened rooms, with some folk having to be tube fed. I recognise that I am so very, very fortunate. And feel it is only right to have given more detail. There are many who can barely communicate.

I call the shots now as far as that is possible not the ME, unless I push it & the claxon sounds — too late, you’re in SETBACK (or worse, RELAPSE. A word which makes any MEep shudder, and cry probably), there are still a lot of those. Rest, relaxation, pacing (as opposed to PACE), peace & quiet & reasonable routine help. But that has taken time & alot of effort to learn living in a different way, with what you have and on most days, that’s not alot.  And to stop comparing yourself, to your previous self or others.

ME basically deconstructed my life overnight. Now, ever so slowly, I’m reclaiming and attempting to maintain whatever bits I can. This is why I’m writing this blog. To share faith, hope, encouragement & discovery, and to attest to the harsh realities of ME/cfs, that many think is all in the mind. Believe me, it most definitely is not.

It took over a year for a formal diagnosis or rather exclusion and almost 17 years on, there still is no formal form of diagnosis or any definitive treatment. I lost my job, so did my husband as he had to give up work to become a full-time carer for a long period & still is a carer, whilst now working full time.

It messed up our finances, we spent a year with no heating & have had times when we couldn’t afford food. And we now rent the home we used to own. It’s been tough and still is, on our little family, but we survive. Travelling of any sort has been a problem from day one for me & continues to be, so I can’t go far or often. I rarely leave our home or home town. This is the person who used to travel long haul solo with 2 under fives.

This isn’t intended as a bleat or a pity party, it’s simply to convey what this particular condition can do and does. Some folk may not comprehend what happens behind the scenes when health fails. Also that the term Chronic Fatigue, implies simply fatigue, and as you have read, there is unfortunately so much more to it than fatigue.

You need rocks when your health changes, & thanks to God, I had and have them. And, if you’re in need of a good cry out, listen to the song below…music so often expresses emotion I simply can’t put into words.

Fix You ~ Coldplay

So there it is, my story in a nutshell. What relief to get that over with! 

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Research into MEcfs

Postscript March 2019 ~ I’ve recently had the opportunity to begin taking part in some research into MEcfs, with a UK ME Biobank. They very kindly travel to me as, I can’t travel to them. I am delighted and hope to write a little about it. But I am sad at the realities of what MEcfs has done. My hope is that the research will find answers for the newly diagnosed. Meaning that they won’t have to resign themselves to little or no help.

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More Research

I was approached in 2019 by Sheffield Hallam University last year. They were interested in using my story for teaching purposes. In helping undergraduates in the subject of conveying a story on life change connected with a chronic illness. I hope it’s of help to them.

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In Print

I have also had my piece

Is Chronic Illness Live Art 

published by the Live Arts Development Agency. In their Live Arts Almanac Volume 5.

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Thanks so much for reading. I do hope you’ll read and enjoy my blog posts. They are in the majority on a lighter note. As quite honestly, I can struggle with discussing ME/cfs. Acknowledging what it has done to my life gets stuck in my throat. But it still has to be said, one can’t hide from reality.

Have a blessed day🌸

Penny @hopefoundinme

*This piece is a work in progress. It literally causes physical pain and to want to run away and hide to write the realities, but it is important that folk know. This condition is more than just being a bit tired. MEcfs takes a wrecking ball to peoples lives.

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Some ME/cfs terms

MEep or PWME ~ a person with ME.

Pacing ~ managing energy available for the day without using it all. This is very difficult when you really don’t have enough at all. This goes from pacing the next 10 minutes, to the day, week & months.

Brainfog – indescribable.

PEM~ Post Exertional Malaise. Can kick in hours, a day or days later and can be physical, cognitive or frequently both.

Payback ~ exacerbation of symptoms following activity, be it cognitive or physical.

Crash ~ when you push beyond available capacity & have to lie down immediately, or you would simply collapse.

Setback ~ can last for days, weeks or months.

Relapse ~ can last months or years.

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*NICE – National Institute for Health and Care Excellence

*GET – Graded Exercise Therapy

*CBT – Cognitive Behavioural Therapy

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I must point out & stress that – The information in these blog pages in no way replaces the need to seek professional medical advice & attention in connection with the condition or symptoms mentioned or described. Thank you.