I am not sure how to write this, for I know I cannot put into words the cruelty of this illness, the gravity of its symptoms, the severity of the suffering and I no longer know where it starts and I begin. I am completely intertwined in its raging tentacles; it controls every ounce of my being, I simply wake to fight, well, to try to fight another day. Yet, I am duly aware that attempting to describe this to my healthy peers is somewhat lost, perhaps sometimes seen as almost an exaggeration or just simply misunderstood, as my face lights up when I finally gain company. To most, I look fine, how could this level of suffering equate to this visual, especially when medical staff do not support that need. Surely this level of suffering would require medical help, right? It’s not a unreasonable thought or question. Perhaps just one ignorant of the discrepancy of medical care within the chronic illness and ME/CFS world. Yet, a simple mention of the same within the chronic illness community, within the ME community is met with a telling nod, a ‘me too‘, an ‘I get it‘.
Perhaps that is one of the cruelest lessons in life, or indeed one of the biggest flaws in human nature, that we must experience something ourselves, or that of our close loved ones, to have a true appreciation for it.
So I lie here, the sound of the birds tweeting outside my bedroom window hurting my pain filled head, already laid on an ice pack. That sound, soothing to most, causes nerve pain to shoot through my body. My blind is drawn, I wear my headphones, not to play sound but on ‘noise cancelling mode’ at all times. Sound, light, touch, all cause pain. My body is hypersensitive to them all. I’m duly aware of the material that touches my skin, the bedding that covers me, clothing quite literally hurts me. The only way I can describe it is to imagine your skin being burnt, raw, and then hot water touches it, it is like that, an awful nerve pain everywhere.
I spend the majority of my time alone. In quiet. In bed. For some reason I’ve found that healthy people think that this must be nice, that I must enjoy sleeping, doing nothing. I guess, for the first time this year, 2020, we have come to Severe ME Awaress Week in a different period in the world’s existence. For the first time, healthy people, as well as those like myself, have learnt a little, of what it is like to be constrained to ones home due to Covid19. The frustration that brings, the upset having your life put on hold has. I hope that people are able to take that experience and perhaps be more compassionate to those of us who have to exist like this on a permenant, long-time basis. You see, I can’t stand being in bed. I feel constrained to it. But I am too sick to leave it. It is a prison. I am not chilling out, having a rest, I am horrendously sick and suffering unbearably with no medial support. Nor am I sleeping the day away, for me, my body doesn’t work like that. So I lie, in relentless suffering, wishing for it to end, knowing what life could be, living in an endless limbo.
I have been plucked from society at the hands of my disease, from this world and I exist within my home, often simply within the four walls of my bedroom. I am missing from the world, isolated, missing from living. Like the many who find themselves in this situation, we face invisibility and are quite frankly forgotten.
I tried to think of how to describe my life with Severe ME and thought perhaps it is more relevant to share things that to me are ‘normal’ but to a healthy person are anything but. In the hope, of shedding light on the true affects of this illness.
When I crash, I begin to feel a cold within my body that I cannot warm from. It feels as though my body is shutting down. My words do not form, they slur, my tremors worsen. A crash can be triggered from my biggest achievement to a simple act. It is what my body finds too much at that given time, on that given day.
My Mum has washed my hair for many, many years. However, my daily migraines, my head sensitivity is so severe that she cannot touch my head, the only way I can cope is for her to pour a shampoo and water solution over my head. Somedays even this proves far too much to bare. She also helps with all of my personal care needs and all the household needs.
I haven’t been able to stomach a ‘real healthy diet’ for many years. At first, my tolerance to meat disappeared. Then fish. Then the nausea worsened so dramatically I begin being prescribed dietary powders. I had about 6 months where I started to manage some vegetables and gluten free pasta, however this has now stopped. I simply wouldn’t eat whatsoever if my Mum didn’t painstaking try to coax me during the day.
Getting to the bathroom, going to the toilet is a massive feat. I have had many water infections over the years simply because I have not had the energy or will to move to go to the bathroom. I have wheelchairs for indoors the house and out, still, the simple act of turning in bed can be too much at times. This is something I know many will relate too.
I was devastated when my stairlift broke. Yet I know how lucky I am to have one.
I struggle to hold myself up. My torso is too heavy a weight for me to bare and even with support cushion behind me it becomes to much for me to hold my out weight up.
There are days when the fatigue is so overwhelming that breathing feels too much.
Everything around me is organised to support my needs. Medication, water etc is always ‘just there’. Alert devices are on hand for safety issues. Support cushions surround me and aids can be found throughout the home.
I have seizures and tremors on a daily basis. They can be violent and leave me all the more exhausted and in further increased pain.
Apart from the very first 4 years of my illness where I was moderately affected, I have always lived with my parents. I had to move back home when I became severely affected and have relied on their care ever since. No matter how I have appeared, I have always needed a lot of care behind the scenes. My family are as devastated by my ME as I am. I can say with complete certainty that I wouldn’t be alive if it wasn’t for their love, care and support. I simply wouldn’t have survived thus far.
I cannot sum up in words how sick I feel on a daily basis. It seems quite unreal that you could be this ill and survive, never mind go on without medical aid.
There is no medial support. I have no medical support for my ME/CFS.
I once was in an appointment with a specialist who had a intensive care nurse with her. The nurse was gaining experience of patients with chronic illness. Through a study, they had found and were learning that those severely affected with chronic illness such as severe ME were sometimes worse off than those in intensive care because intensive care patients were constantly monitored, vitals checked, fluids given. Those house and bed bound for many years on end don’t have this access to care. How interesting, finally, it seems, someone, somewhere is taking note. How long it may take for any of this to come to fruition who knows? But there is hope and validation to be found there.
I’m afraid I have to leave it there. I simply cannot sum up the energy, nor the brain power to write further. Though I wish so much I could somehow put into words, well everything, despite how vulnerable it makes me feel to share such intimate struggles. Not for pity, or sympathy, but because I know there are countless others out there just like me, suffering in silence. There are people without any support, alone, in agony. Our stories must be told, awareness must be raised, ignorance broken, society educated. We cannot keep loosing people to this illness. We cannot go on unsupported anymore.
Please take time this Severe ME Awareness Week to think about those affected by severe ME/CFS and about those we have lost 💙
If you’d like to read more about how severe ME affects my life then please read ‘My Story With ME‘.
For more information and support on ME/CFS please see The ME Association
If you need support or someone to talk to, please do contact The Samaritans
You wrote eloquently about your ME experience – it’s what we all feel to some degree. But you said it all with these words “Surely this level of suffering would require medical help, right?” I hope you get the help you deserve. I’ve recently worsened after Winter viruses and have found Amitriptyline to really help with the pain of ME and Fibromyalgia – also Gabapentin. I wish you well and thank you for sharing your experience. I have some idea of what it cost you to write.
Thank you so much, it really means a lot and I’m sorry you understand it so well. Sending love you way!
Hi Amy, you put into words the struggles I feel! I am so sorry that you are going through this, I’m glad you have your family to support you. Love and gentle hugs x
Thanks so much Helen. I am so sorry you too also suffer in the same way. Sending much love and strength your way. x
I simply cannot fathom how difficult your life must be. I feel anything I write here is so ineffectual and pointless it’s embarrassing, I simply don’t know what to say. I really feel for you Ami and can only hope some medical development can be found to help people in your situation. Again, I’m so sorry I can’t offer any words that actually mean anything 🙁
thankyou Richard! Honestly, even the fact that you took the time to read this genuinely means so much. I really appreciate it. thank you!
Also sorry I spelled Amy with an I, doh!
My husband has been my sole caretaker for 20+ years. He does everything your mum does. It’s just not fair for him. I don’t know what people like us do without family (or the money to hire full time help).
Thank you for expressing those things all of us with severe ME/CFS think, know and feel! I’m sure it will be a comfort to those who will know they are not alone!
your husband sounds like a trooper! But yes, it is not fair on anyone to have that level of care thrust onto them. It is frightening how ME/CFS affects so many people, not just the patient themselves and how many people suffer alone.