Meeting my illness – Part 2 – A new way of Life

A new way of life

By the winter of 2005 illness had taken over my life, indeed taken my life…I was completely bed bound due to severe M.E and reliant on my parents for care. My previous life seemed so far away at this point and I was in a complete state of shock and grief. As were my family. Not only did they have to watch their once healthy, exuberant daughter waisting away, unable to eat or lift her head to drink water, they suddenly had to become carers overnight both physically and emotionally and still to this day, I cannot imagine what that burden must be to bare.

New symptoms, new diagnosis, new illness

I started to develop severe pain, overnight from nowhere. I’d never experienced pain like it. It was so bad I would sob my eyes out for hours during the night, my Mum having to sit with me to console me-all the while getting up to go to work the next day.
I’d wake to find my cheekbones would be swollen, the skin feeling bruised to the touch; I’d feel as if I had black eyes. My collar bones would be swollen too, my joints ached, my skin felt burnt and the pain, god the pain! The best way I could describe it is as though there are knives in my blood stream and they move with my blood flow, slicing and stabbing as they do, becoming more and more vicious in action. Before long I was admitted to hospital, the infectious diseases ward, the ‘bubble ward’ in particular, where they bought me off codine. I was seen by Pain management,  and in time, diagnosed with Fibromyalgia furthering my journey into pain management and a myriad of strong pain killers and medication cocktails.
My Family had to watch their once healthy, exuberant daughter waisting away, unable to eat or lift her head to drink water, they suddenly had to become carers overnight both physically and emotionally and still to this day, I cannot imagine what that burden must be to bare.

The true nature of Severe M.E

During my stay they ran many tests and I remember vividly feeling terribly ill, so desperately fatigued, a fatigue beyond comprehension. Exhausted from it all, I just wanted a break, that I begged my consultant to put me into an induced coma. That is where I was at with my suffering, that was how exhausted I was, how desperately I longed to rest; little did I know how many more years I had ahead of me to endure. A coma would be too stressful on my body at that time, so I was given sedatives, benzodiapiens and morphine to help me rest and to aid pain relief, (a wonderful cocktail for addiction). Later during my stay I had visits from a psychologist, to help me manage my suffering. At this time I had no idea the impact psychology would have on my suffering with M.E. And indeed, as I would learn, the dreadful affect it would have on M.E treatment and misconception of the illness as a whole (PACE trial & A Trial by error, David TullerDrPH) .

Hello Coeliac’s

Through testing I learnt I had Coeliac’s disease, which i’ll be honest was just bloody annoying!! I mean talk about kicking a girl when she’s down! Let’s take away all the tasty food in the world! God damn it!
After sarcastically being annoyed at my new dietary choices and wanting to throw all the gluten free bread at the wall (this is 2006 guys, it was so bad it would’ve dented the wall, I kid you not!) we slowly got to grips with everything that contained gluten (that stuff is everywhere!) and began healing my gut.

The heartbreaking realisation of there being no help

Along those years I had many experiences with counselling (which I’ll go into in another post) and Physio but I quickly learnt that there was NO help for my illnesses, particularly M.E, none whatsoever. And that is a scary place to be. To be so terribly ill and so terribly alone and helpless. To wake up one morning and learn that all the Doctor’s you believed would be there if or when you got sick, suddenly had no answer, or worse, didn’t care to, is frankly terrifying. I was referred to an M.E clinic who told me they couldn’t treat me as they didn’t have an accessible bed for physio to use  in the clinic and then I was discharged from my M.E specialist because he deemed me ‘too severly ill’ to visit him in clinic. I became one of the 25% who was completely bed bound and completely forgotten about.
My GP was my only medical support but apart from renewing my medication, there was and still is very little he can do.
Over the years I have since developed IBS, Hiatus Hernia, Osteoarthritis and Neurally Mediated Hypotension and Sjogren’s disease.
It took years to have my Osteoarthritis pain taken seriously as I was told it was just the Fibromyalgia, eventually after much persistence on my behalf, X-rays were performed and showed it is indeed that.
Symptoms… that were the alarm bells, one’s that seemed at that time deafening to me and my family as I collapsed over and over but silent to everyone else.

Forever fainting

My story with Neurally Mediated Hypotension is very similar. Every time I have mentioned those symptoms to Doctors over the years they’ve always been shrugged off, belittled as me being tall, thats why I faint etc (despite my blacking out in my wheelchair daily), yet myself and my Mum have always known there has been more to it- after all as a family, we live it daily. Eventually after researching a specialist myself  (Professor Julia Newton) and recording my heart rate and blood pressure readings, presenting these to my Doctor, then I was given a referral. It was through this referral my diagnosis was made and I was given treatment- treatment I could’ve been having for years. I can’t help but wonder if this current severe relapse might have been prevented if this had been taken seriously earlier, after all it was my symptoms that would later be diagnosed as Neurally Mediated Hypotension, that were the alarm bells, one’s that seemed at that time deafening to me and my family as I collapsed over and over but silent to everyone else.

Ongoing investigations

Once again I find myself in a similar situation where after three years of suffering stomach pain and nausea (my symptoms being attributed to my chronic illnesses or IBS), it has taken a emergency trip to A&E and for me to be unable to eat for tests to be performed and for one to come back positive for Inflammatory Bowel Disease, for scopes to show Colitis. I’m now waiting to see my gastroenterologist to discuss the results and have prescribed nutrition shakes from my GP as my nausea is so constant it is difficult to eat well, if at all.
Me, today
So this is where I am now, with quite the collection of illnesses, bed bound, feeling like I look like one person to the world and I’m another on the inside; one that is incredibly misunderstood. I long for treatment, for help, to be heard and I hope that day comes soon. That is a big part of my mission with this blog. I want those who suffer in silence to have a voice, to be heard, to feel less alone in this world that can sometimes feel so hard, so cruel. I spent the majority of my earlier years of illness without the benefits that social media can provide to those isolated by chronic illness; friendship, solitary, support. I want to be able to offer that to others. If there is one thing that running my instagram @myillnessmythoughts has taught me it’s the generosity and kindness of others, while they are suffering themselves.
I read this quote and it inspired me, I hope it inspires you too as there is something reassuring knowing that we are not alone.
‘Tell the story of the mountain you climbed. Your words could become a page in someone else’s survival guide.” -Morgan Harper Nichols


Picture of a bedroom, with a bed with white linen and two throw cushions. Written on front of the image in large text is the title of the post "Meeting my illness part 2 a new way of life".

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  1. I think that this disease begins in many shapes and forms. I know that most of my life I have been sick. I have barreled IBS/Colitis since a child. I had a severe panic disorder at 25 that led to agoraphobia. In 2005 I had a minor car accident that ended in severe back pain! My body began having all kinds of medical issues that led to extreme job stress over missed days. I was using disability and working when I could. Then my father became terminally ill, which led to a temp. Leave from job to take care of him. This led to more stress. Wanted to keep my job, but so hated by management at this time. Finally quit my job, then husband became very ill with kidney failure, needing a transplant! I think that was the final straw for my overly stressed body. It was not sudden, it kind of grew as I fell apart. The pain became scrambled, fibromyalgia, neural burning pain everywhere, and exhaustion. So severe I could not get out of bed! A good day led to a worse day. Then it just all became the same day! Pain, exhaustion, can’t get out of bed. Weakness so severe I could not eat. Talking was exhausting, but still had to manage husbands illness and surgeries and hospital stays. Total collapse. Here I lay wondering WTF happened! I was so active, outgoing, extroverted and managing life well. Now it’s just gone. I had one rebound in August 2017. Work up, felt great for about a month, then my husbands kidney failed, led to a year of emergency situations and back to looking for another kidney. Before he even got his strength back in March 2018, I crashed even worse. Trying to run it all from bed again! Every test run, Drs just tell me I am wired differently. Decided to detox off of not all, but a great deal of pain meds for last two years thinking it would help. It did not, but learning to deal with pain. But fatigue is all consuming. No answers, no real hope it will get better either. I just exist day to day. Trying to help husband who is trying to help me, and both of us sick and frankly just out if options. Do I sound drpressed? The doctors think so, but I take all kinds of meds for that too. I think fed up, giving up mostly is more the thing. We are older now. My time was stolen and now I just really no longer care to live on like this. Not suicidal, just convinced that at my age 63, the answers will not come in my lifetime. I know it’s real, although many just feel I need to get up and move, exercise my way out if it! . I know too many of us to not be real. They will figure it out one day. First time I just put it out there. Sorry it was you. But your story resonated and Gave me the platform to purge this madness that no one but us understands.

    1. Thank you Debi for sharing your story with me. I can imagine it took a lot of strength to do so for the first time. It sounds like you have been through SO much and I know you won’t have even touched the surface with what you’ve shared today. I’m so terribly sorry for all you have and all you are suffering. I find one of the most difficult things is not only to live with this illness that is so cruel and strips you of your life with it’s ongoing physical torture but the lack of understanding and discrimination we face daily from others; it is as though we have two battles to fight. You sound so incredibly brave, giving and strong. What I hear is someone, who despite their own agony has gone above and beyond to be their for their husband and that takes bravery. And in my eyes, that makes you a very special person. Sending spoon hugs your way x

  2. I enjoyed this article very much. I’m sorry that you’ve had to be misdiagnosed and put off for so many years, and suffered extra pain.
    I was about 45 when my illness hit me, and I could no longer work, and became housebound for the most part. I’ve been told I have Fibromyalgia and Osteoarthritis, but not given any relief or information. I feel that I have ME, after learning more about the symptoms. I was already learning on my own how to live within my limitations, but truly, no one understands the depth of fatigue.
    I soooooo appreciate your Instagram page, and that you give time to upbuild a while community of people like you.
    Thank you!!!

    1. Thank you so much Erica! That really means a lot to me. I’m so happy you appreciate it. I’m so sorry to hear about your illness. We do have a very similar illness pattern don’t we. I, like you was given no relief or information when it came to Osteoarthritis. I did see Pain management for Fibromyalgia who gave me pain killers. I completely agree, no-one understands the depth of fatigue in the slightest do they, it truly is all encompassing. Thank you so much for sharing your story with me, and while I’m so terribly sorry that you can relate, I hope that you can find some reassurance knowing you’re not alone in your fight. x

  3. “I long for treatment, for help, to be heard, and I hope that day comes soon”

    This illness has for so long been ignored, even ridiculed, but the tide is turning and once a definitive diagnosis is available seriously ill people like Amy won’t have to fight for belief in their symptoms. Research is ongoing but it is desperately underfunded worldwide, millions have been wasted on the flawed Pace Trial, whose results actually further harmed patients.
    Medical science solved the AIDS crisis, can M.E. be next, please?

  4. Hello Amy! My name is Carole, I am from France and I too suffer from M.E. I wanted to thank you for sharing your story, it feels unbelievibly good to read your thoughts since I share quite a lot of them with you. When I got sick and saw that no doctors knew that I had, that some even made fun of me because they thought I was exagerating, it was indeed terrifying. I can walk and do stuff but I ultimately pay the price by being unable to leave the bed for weeks or months afterwards. The painful think is that my family still thinks that « it’s in my head » and it depresses me so much. When your loved ones think you’re faking, you always feel like a fraud. I hope one day I will learn to be stronger than what people think and be able to help people, like you do. Thank you again Amy and take care of you! Carole Guimaud

    1. Thank you for such a lovely comment Carole and for sharing your story with me too. I’m so glad to hear it helped to read my story, that is exactly why I wanted to share it. It is just awful how doctors can act. They’re the people we hold in high esteem (or at least used too, before I became sick) believing they can help us, and then they treat us terribly when we are so sick. I’m so sorry you’ve had to go through that. And to not have the support of your family must be heartbreaking! You are not a fraud. I believe in you and you have you support of the whole spoonie community behind you. Please take care of you x

  5. Thank you for sharing your experiences. I started suffering from ME seven years ago, following cancer and chemotherapy. I was not as severely ill as you but it was still horrific. The fatigue meant I could do virtually nothing. I was back and forth to hospitals and my GP for about 3 years, all a complete waste of time. I then heard about Dr. D.G. Smith who worked for the NHS but who has now retired. I saw him and the advice he gave was invaluable and I gradually improved considerably to the extent that I now lead a close to normal life. He has a website with lots of extremely useful information and advice and I would thoroughly recommend it to anyone suffering from ME.

    1. I’m so very sorry to hear about your experience with your health. It sounds as though you’ve had such a rough deal!I’m pleased to hear you have managed some level of recovery and are doing better than you were. Thanks so much for sharing that info with me, I will check it out!

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