My Story – Living with Severe M.E.

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Foreword:
Myalgic Encephalomyelitis (M.E.) is an incredibly isolating and debilitating condition but I don’t want your sympathy, that’s not why I’m writing this piece. All we (the M.E. community) ask is for understanding and education. We want to be taken seriously by medical professionals and for funding to be made available to research this devastating condition. M.E. has been recognised as a neurological disease by the World Health Organisation (WHO) since 1969, so why do so many medical professionals still deny it exists? It’s estimated that 17 million people worldwide suffer from M.E. How many more have to suffer before action is taken?

If you want to learn more about Myalgic Encephalomyelitis (M.E.) please click here: https://www.actionforme.org.uk/what-is-me/introduction/

My Story – Living with Severe M.E.

My name is Jo Moss, I’m 43 years old, I live in Norwich (UK) and I have been missing for 12+ years.

Like millions of others – I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.

My M.E. Story starts in my teenage years. I didn’t get a sudden onset of symptoms like many sufferers, instead mine was gradual. I had always been a sickly child but in my teenage years my health deteriorated. I had a succession of infections including throat, ear and chest infections along with numerous bouts of tonsillitis. Hormones also triggered debilitating migraines which completely incapacitated me for days at a time. I had numerous operations for a number of health conditions which I believe weakened me. Shortly after this I had a particularly bad case of the flu and I never really recovered.

I struggled with overwhelming fatigue and flu like symptoms for years before I was finally diagnosed with M.E. Every GP I visited, begging for help, blamed my poor physical health on depression and anxiety, and just prescribed antidepressants or anti anxiety meds – I was even diagnosed with PTSD by one doctor. I was finally diagnosed in 2006 by a new GP who had just transferred from the local M.E. clinic to my doctors surgery. She was great and referred me to the clinic. She was very supportive but sadly, she left soon after.

At the clinic I was taught pacing and went through a course of CBT but that was about it, they did however write to my employer explaining what M.E. was and how best they could support me, which was great. I worked in the finance industry before I became ill. I loved my job, I loved having a purpose and being busy.

I was still mobile at the beginning but my health continued to deteriorate due to a lack of treatment and support, and stress brought on by having my health benefits removed. I was assessed as 100% fit to work at a time when I could barely function or care for myself. I had to appeal, which took 18 months, it was so stressful and exhausting – it broke me. I have been virtually bed bound now for 5 years.

Unfortunately subsequent doctors haven’t been as supportive – many have just dismissed me. The usual practice is handing out antidepressants and painkillers but I’m intolerant to most prescription meds and the side effects are just too severe. I had one doctor tell me “Your fatigue is caused by over sleeping”. I had another GP tell me “If you don’t get out of that bed soon, you are going to die in that bed – sooner rather than later” I sobbed for 2 days. Unfortunately incidences like mine are not uncommon for M.E. sufferers.

I now live my life from my bed. I am lucky to have a very supportive husband, family and friends. I have care workers come to assist me twice a day which takes some of the pressure off my husband. It’s weird having strangers walk into your home, it took me a long while to adapt to that. I have always been so stubborn and independent so asking for help is challenging for me.

The realities of living with severe M.E.

1. I live in a dark room with blackout blinds and thick curtains. I wear earplugs because even normal levels of sound are painful. I’m confined to my bed 97% of the time.

2. I can’t stand or sit up long enough to prepare food for myself so I rely on others to do this for me. I can’t sit or stand for more than 5 mins due to weakness, pain, palpitations and dizziness.

3. I only shower once a week because it is so exhausting and painful and my husband has to help me. I have learnt how to shower quickly but it still exhausts me for days. We had to convert our bathroom into a wet room because I was too weak to get in and out of the bath.

4. I used to have very long hair but I had no alternative but to cut it off because I couldn’t manage washing and drying it myself. My hair was also very painful on my skin. I can’t sit up long enough to have it cut or styled, so my husband shaves it once a month using a pair of clippers.

5. My husband and my carers do everything for me – cooking, cleaning, personal care etc. I’m so thankful for this but it means I lose my personal space and control over my environment.

6. A common myth about M.E. is that we sleep 24/7 but this isn’t always the case. Even though I’m exhausted all the time I struggle to sleep or even rest due to pain, muscle spasms, dizziness and palpitations. I constantly feel agitated – in a state of unrest.

7. Everyday objects are too heavy for me to lift, like kettles, standard crockery and jars (I use plastic ones), I can’t even open the fridge.

8. I can’t watch TV or even listen to the radio – it’s too exhausting and painful.

9. I’m alone for long periods of time because social interaction is exhausting and painful. Some days I struggle to communicate due to exhaustion and cognitive problems caused by M.E.

10. I only leave my bed to go to the bathroom and I only leave my house to go to the hospital. I haven’t been outside for months, it’s just too exhausting and I’m too weak.

11. I pay for every activity I do. Post-exertional malaise (PEM) is a key symptom of M.E. that causes a spike in symptoms and a massive energy crash after what, to other people, would be minor exertion. This means, if I choose to spend a few minutes talking to a friend, I’m likely to ‘pay’ for it for days afterwards.

12. M.E. is not just fatigue. There are a myriad of symptoms including: muscle and joint pain, dizziness, flu like symptoms, swollen glands, Post-exertional malaise (PEM), hypersensitivity to noise, touch, light etc, muscle spasms, cognitive problems (brain fog), sleep disturbances, shakes and tremors, weakness, headaches and migraines.

13. M.E. doesn’t just affect me. It also has a huge impact on my husband’s life. Not only does he care for me but he also has to put up with ‘strangers’ (care workers and medical professionals) coming into our home. He has to be quiet all the time and physical contact is limited. His life has to involve around me and my poor health. His social life is also restricted – in some ways it’s just as isolating for him as it is for me. He has to watch me suffer knowing, apart from being supportive, there is very little he can do to relieve my pain and suffering. He married an able bodied, active woman and has had to make a lot of adjustments because of M.E.

Before I became sick I had a very active social life. The boots in my photo represent my character well. I’m a rock chick who loves live music, dancing, singing, laughing and drinking with friends. I miss this so much, I even have vivid dreams where I’m singing so loudly I wake up with palpitations. My subconscious mind still craves stimulation even if my physical body cannot tolerate it.

M.E. has stolen so much from me but the most frustrating part about this debilitating illness is not being believed, and not having a voice. We are not just ‘missing’ – we are ‘forgotten’. That’s why I started my blog ‘A Journey through the Fog’ 6 months ago- to give myself a voice, to raise awareness and to try to reach out to others who are suffering too. Thanks for reading. Take care x

#ajourneythroughthefog #chronicillness #MECFS #mentalhealthawareness#fibromyalgia #blog #anxiety #depression #meawarenessmonth#millionsmissing #meaction #chronicpain #spoonies#MyalgicEncephalomyelitis #MyalgicE

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13 Replies to “My Story – Living with Severe M.E.”

  1. Well written, lovely rock chick. 100% with you. Sister has very severe. 30 years now 😞 Taking shoes to London on Saturday for her. It’ll break my heart. All power to your husband. X

  2. Jo, thank you for sharing your story so openly. It is so important for the world to see just what life is really like for us who are severely ill with this life draining illness.

    You are a great warrior and I’m so glad that your story is being heard and shared so widely this month. Well done.

    Sending you big hugs xx

  3. Well done for writing this. It is so well written. It can’t have been easy for you to put it into words.. So sorry to hear how much you have suffered. Really pleased your story is being shared. So important for raising awareness xx

  4. Huge respect and gratitude to you for writing this. May those who need to learn the truth about our disease see this post and pay it the attention it deserves. I hope today is a good day for you.

      1. Thank you so much for writing this. Your husband sounds amazing. My wife left me after 8 years due to my health, sadly I don’t just have ME. I’ve been ill all my life. But I was left broke and homeless. Now in temp housing and it’s awful the noise alone makes me want to die daily. I’ve been thru 3 care companies but sadly they didn’t work out now my mum has stepped in part time. I’m house bound 100% and bedbound 70% of the time. My new gp doesn’t get it, and mental health are no support. The council doesn’t want to know. I’m so proud that you and others can do this and raise awareness, it’s helps more than I think you know, it’s what keeps people like me alive. So again thank you so much and I hope that you manage to keep it up. Love to all those out there suffering and there supporting families. Thank you again, it’s people like you that give me hope, you really are a light in this dark world we live in.

  5. Thank you so much for sharing. My wife married me when I my health was going down hill, I’d suffered with health problems since I was a child with pain etc after our wedding I got swine flu and got ME. After 8 years together she left me, couldn’t cope with me not being me anymore, left me broke and homeless. Now in temp housing and it’s hell the noise is unbearable. I want to die daily. My new gp doesn’t understand it or believe. I have many other conditions including eds, fms etc my mum now my carer part time as 3 companies have left me down so much and don’t understand. I’m housebound and bedbound 70% of time. The council don’t want to help they don’t see me as needing help in lowest band. I’m so glad that people like you have the strength to raise awareness and have the support to do it. It makes me so proud and gives me a little hope. Love to all those that are suffering and the families.

  6. Thank you so much for sharing. My wife married me when I my health was going down hill, I’d suffered with health problems since I was a child with pain etc after our wedding I got swine flu and got ME. After 8 years together she left me, couldn’t cope with me not being me anymore, left me broke and homeless. Now in temp housing and it’s hell the noise is unbearable. I want to die daily. My new gp doesn’t understand it or believe. I have many other conditions including eds, fms etc my mum now my carer part time as 3 companies have left me down so much and don’t understand. I’m housebound and bedbound 70% of time. The council don’t want to help they don’t see me as needing help in lowest band. I’m so glad that people like you have the strength to raise awareness and have the support to do it. It makes me so proud and gives me a little hope. Love to all those that are suffering and the families.

  7. Thank you so much for writing this. Your husband sounds amazing. My wife left me after 8 years due to my health, sadly I don’t just have ME. I’ve been ill all my life. But I was left broke and homeless. Now in temp housing and it’s awful the noise alone makes me want to die daily. I’ve been thru 3 care companies but sadly they didn’t work out now my mum has stepped in part time. I’m house bound 100% and bedbound 70% of the time. My new gp doesn’t get it, and mental health are no support. The council doesn’t want to know. I’m so proud that you and others can do this and raise awareness, it’s helps more than I think you know, it’s what keeps people like me alive. So again thank you so much and I hope that you manage to keep it up. Love to all those out there suffering and there supporting families. Thank you again, it’s people like you that give me hope, you really are a light in this dark world we live in.

    1. I’m so sorry you have had such a tough time and are still suffering. My hope is that by sharing my story and raising awareness, it will eventually lead to more funding for research and benefit the whole ME community. Take care x

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