If you’d like to listen to the audio version of this post you can find it over on the Spoonie Village Podcast here!
How I came To Meet ME
I first met, what I would later learn to be ME (Myalgic Encephalomyelitis) I was 19 years old. I was at university, thriving, enjoying life. My course, BA (Hons) Dance with Drama, was everything I wanted and I loved my little life on a small campus, in a sleepy commuter town in Cheshire. I was happy, I was stressfree.
It was the second week of January 2001. Our university life was not the norm. This tiny campus compared to many inner city’s, lacked many amenities and meant that those living in halls of residence would all trundle down to the cafeteria on an evening for our nightly grub. This evening, however, was different. For the first time in my life, I couldn’t lift my head off my pillow. My body, heavy. I missed dinner that night. The following also. Two weeks later when little had improved I saw a local GP who told me it was viral fatigue. It would soon go away. After a few more weeks I had to return to my parents home in Northumberland. My at home GP confirmed Glandular Fever, two months later when I steadily worsened I was given the diagnoses of M.E.
I was lucky to receive a diagnosis this quickly. Lucky to have a supportive GP at my home. The next 6 months were spent at my parents home being looked after, trying to adjust to this new ‘me’. This person who’s energy had, quite literally, disappeared overnight. I was lost.
After this time of resting had passed I was able to return to university on a part-time basis. My tutors were very helpful, aiding this by changing all of my modules to theory-based, my ability to dance, to perform had disappeared, my cognitive function was impaired, I was constantly run down. This, it seemed, was the new me. I didn’t recognise her but I still had a chance.
At the time, I thought this was bad, this feeling in my body, this sickness. To me, going from a hyperactive, energetic, fit person to how I then felt, which was sick, was simply horrific. Little did I know what would come to hit me in time.
I learnt that rest was my only friend. And with that, I would attend a class, rest. Socialise, rest. This was how I attempted to get through my degree, a careful balancing act.
Then graded exercise was suggested. In order to get better, I must ‘push myself’ a GP told me. I questioned my body, I questioned myself. Was I not fit enough? Why could I not fight this? With little medical support, I blamed myself. My final year took it’s a toll on my body, as did GET, (Graded Exercise Therapy). My body couldn’t cope against the fight of the disease and in the autumn of 2005 once again everything changed. I had thankfully graduated, just. However within months, my body didn’t just tell me to stop, it defied me to do anything else but listen. I had been ignoring its cries for help for too long. Ignoring it as it forced me to lay, passed out on office floors, ignoring it as I gulped back the litres of energy drinks just to get through the day, ignoring it as I cried myself to sleep wondering how I could do it again the next day? Finally, it said enough. Enough.
Within a few months, I deteriorated from moderate M.E to severe. I stopped eating. I was under the full-time care of my parents, relying on a wheelchair to get to the bathroom, existing in my bed for the remainder of the time. It appeared, things could get much, much worse than I could have ever have imagined.
Years would pass by living within four walls.
The suffering unbearable and yet there was no relief. I was on the highest dose of opioids, sleeping pills, anti-inflammatories, goodness knows what else. It was here that my family and I would learn the true disparity in care. For there really is no care for those with M.E, especially severe M.E. Once I had been through all the testing at infectious diseases, I finally saw an M.E specialist with whom I falsely placed hope, only to be discharged from their care for being ‘too severe’. The medical neglect and suffering myself and my family have suffered throughout the years is frankly heartbreaking. And so I was set to continue my life within four walls developing co-morbidity one after another.
At around 11 years after first becoming ill I noticed slight improvements. Over the next few years, I found I was able to do a little more, so long as I prepared myself incredibly and paid for everything immensely. I was lucky. At one point I found I was able to study one day a week, I studied Makeup Artistry and it bought immense joy. However completing one day, a few hours, of study, would require six days to recover and this was a repetitive pattern. This became the place I now resided and I couldn’t believe my luck, I couldn’t believe I had the chance to possibly have a future. One where I could spend some of my time out of bed. Of course, I was still sick but it appeared, at times, I could manage a little more. I could spend time with friends, I began to feel somewhat like the old me again.
I learned the hard way that for me, M.E did not have that in mind as I relapsed back to my most severe again. Gone were my moments to do something, I was back within my four walls 24/7 again.
On the brink of two decades into my M.E journey is where you meet me now.
I have never been symptom-free, at my ‘best’ M.E times, on my ‘better’ M.E moments, I pretty much always feel dreadful. Reading this, listening to this, without M.E, someone might think that to study, to ‘do something’ I will have ‘felt well’ or ‘better’ but this illness doesn’t work like that. You don’t simply get to ‘feel well’. In fact, it’s been so long since I felt well that I can’t remember what not feeling sick feels like. With M.E you simply have moments within a day, and that’s certainly not every day-they can and very much are fleeting, where you don’t feel as horrific as at your worst. That is the best way I can explain it.
You are aware that every action has a consequence. For example, I can feel the physical act of disgesting food making me crash, a crash being a sudden worsening of symptoms, an onslaught of you at your worst, and this from the most simple of things; a shower, sound, food, conversation; things a healthy person might take for granted.
It is a relentless suffering and one that is misjudged both because of its invisibility and because of its ignorance both within the media and within society. All of which makes life for the sufferer harder to bare.
How Severe M.E Affects ME
The true nature of M.E really is wildly misunderstood within the greater society. I’d be lying if I said I had a good understanding of it before I fell sick with it nearly 20 years ago. However, few diseases have received the stigma and misrepresentation as M.E. It’s frankly criminal. What’s worse is because the illness has been so terribly misrepresented within the media people have a very poor understanding of just how sick a person can become with M.E. Usually, only those who know someone with the illness gain an appreciation of the illness and those who see them often truly understand the level of suffering.
I have severe M.E. I can only count a few people who I can say truly understand or appreciate just how sick I am. I feel lucky to have those. This disease is frightening. It can tear you away from society, from all those who know you, force you into darkened rooms, insufferably sick and still you can just disappear. With little to no medical help. With so little people there to fight your corner, very few who try to understand. It is an invisible illness, a factor that makes it difficult for others to understand in itself but there is another invisibility I’d like to discuss and that is one related to being housebound or bedbound or indeed both.
I write this from my darkened room, in one of my best moments on one of my best days. I live for these times. For these moments, fleeting as they are, make the unbearable suffering of my worst days, weeks and months, somehow less. They are my light at the end of the tunnel. I would be lying if I were to say that there have been nights I thought I would not wake the following morning, this is the true extent of my illness.
Severe M.E impacts every aspect of my life. You have to remember that I am used to my body feeling like I have flu and I mean proper flu. Every action takes so much effort. I ache, I hurt, my limbs a weight I simply cannot bear. My head a weight I cannot support. Light, noise, smells become insufferable, my senses heightened that the clothes on my skin feel like a knife. My body crashes when I’m able to eat and then it refuses to let me eat most of the time, nausea simply wins. Oh and the fainting, the fainting, the seizures, the seizures, the constant daily migraines, insomnia and brain fog… I could go on and on.
My mother is my carer. I rely on her for all my personal care needs, food needs, household needs, shopping needs, wheelchair, transport, shoulder to cry on… Again I could go on. I am lucky to have parents who support me completely, lucky to have a family who understands. Many don’t.
I have no social life. I barely have a life. My brief moments when I feel ‘my best’ I am still painfully sick but for that brief moment, I am not as awfully sick as I have been. So yes, I live for these moments and it is in these times that I try to do things that bring me joy, be that writing, playing with makeup or chatting to a friend. But goodness knows, I will suffer for it. Because payback is very real.
We suffer for every action. And all of this goes against who I am inside. I always refer to myself as the Amy who’s inside, the ‘real Amy‘, the one before I got sick, then the ‘shell-of-a-body-sick Amy’. ‘Real Amy’ is always fighting to get out. Always. I’m still working on joining the two together, allowing them to coexist.
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.
How M.E Changed My Life Irreparably
The good and the bad. I have lost faith in some and gained it in others. I seek the truth and I have a deeper empathy and compassion for my fellow human than I can ever have imagined. I believe my illness has taught me many lessons and it has allowed me precious time with my family (how precious they might call it with all my moaning is another question… 😉 )
I have lost myself. The person I was before falling ill with M.E and this person I have grown to be with this illness. As I fall over and over throughout this fight with this disease I lose myself time and time again, each time trying to rebuild myself without the chance of rebuilding my life.
I am scarred, I am angry, I resent my lack of treatment, my lack of care and that of my fellow M.E suffers. I am, however, deeply compassionate, I have discovered the advocate in me, my voice. Each day I learn of others who need their voices heard and never before have I felt more impassioned to help, I just need my body to allow me to do so. I have lost so very much but I have learnt so much.
Facing Loss With M.E
I feel that loss is one of the most difficult parts of dealing with chronic illness, in fact, loss is the most difficult thing of all in life, is it not? With chronic illness, a difficulty is that there is no end date, no ‘get out of jail‘ card, no holidays, no rest. The world often moves on around you while you are left standing still. With this, there is a perpetual grieving process, times when it is all too much, others where it is easier to deal with. There are some things that become easier to accept, others with bear a hole within our hearts. Loss of self. Loss of career. Loss of independence. Loss of the chance to be a mother. Some are easier to deal with than others, some I’m not sure I’ll ever be ok with and that’s ok in itself.
I have no pension plan, no home of my own, no family of my own. There is love in my life but I have never been in love, I have no partner to share my day with, nor am I well enough to manage this but that does not negate the feeling of loss or want. The desire to be a mother, to have a family of my own, to be like so many I know. To fill the empty void. Time ticks on, yet I remain still. Of that, I’m all too aware.
Future With M.E
Do I have a future with this illness? That’s a question and a half, isn’t it? For me, I guess I’ve learned to try to approach things with a different mindset, for my own well-being. If I were to think of my future as having a career, living independently, having a family and so on, the very things I have dreamed of for years and had snatched away at every turn, then no I don’t see that. Not anymore, at least. I can’t. I can only live in the present. I can only see my future in bite-sized moments that happen throughout the day. ‘Live in the moment’ I guess. This illness has taught me the fragility of my body, of life, of everything that is held dear within society. I have and do yearn for it all, don’t get me wrong, but for now, for my health, my sanity and to live, my future is in my present.
Will I Ever Know Me Without M.E?
5% of people who develop M.E fully recover. Those affected most severely seem to have a lesser recovery rate. No one can say whether I will be affected by this illness for my whole life, whether I will survive it, whether I will be a miracle story. One thing I am certain is that it, M.E, will have a lasting impact no matter what. I am inexplicably bound to it, whether I ever recover or not, it will always be a part of me. I do not see the world through the same eyes, nor do I judge people through them either. I believe as a person, this illness has taught me a lot, I just wish I could’ve learned it a better way.
Is There Hope For M.E and ME?
Goodness, I hope so. Right now, there are scientists worldwide working tirelessly in combined efforts to find a cure, to treat M.E. Over 9000 bio-medical research papers have been published showing the multi-systemic problems this disease causes.
Scientists and journalists are coming together to fight the misinformation that continues to stigmatise M.E and those who suffer it.
These wonderful people show that there is hope for us. We just need others to fight our cause to that their work can be funded through government grants. It shouldn’t be up to patients and their loved ones to fundraise for charities to support such important, life-changing work in any illness.
What I Want Others To Know About M.E
I feel broken every single day. As though my body is leaden, quite literally as if my blood as has replaced with lead and it is that weight that curses throughout my body, weighing me down, poisoning me. And I do feel poisoned, more often than not. I can’t simply comprehend being so severely sick and having no help and yet this is my reality. That is the terrifying nature of this illness and one I hope others may never have to find out. We, those with M.E, live, rather exist, in this state where our suffering is questioned on a daily, ney hourly basis, and yet there is so much proof to stand by just how sick we truly are. In one sense, more people need to fall ill from this heinous disease in order for it to be taken seriously, for funding to be granted, for further research obtained and yet in another, I wouldn’t wish this illness on anyone, not one single soul. For it truly is that cruel.
What You Can Do To Help Me And Others Like Me
Educate yourself on the true nature of the illness. Not on the rubbish that is often perpetuated by the press but on the research papers and by those who suffer. Be there for those you may know who suffer from this disease and listen. Often that is all they need.
Share articles, truthful articles, if you are unsure which are best, ask! Help spread the correct knowledge of this illness. Help support a community that has been marginalised and gaslighted for decades.
This is an uphill battle. For all of us. Patients are fighting to survive with little to no help. Any support you can offer will be appreciated. We shouldn’t have to fight for help, for treatment, for basic human rights but we have and we are. We simply want to be supported in our endeavour.
And this is where my story with M.E pauses while I make a haphazard attempt to sum up 20 long years in a matter of moments. I sit here writing from my bed and I’m aware of how much more I could tell, all of the awful symptoms I could add, the woeful mistreatment I could recant but for now, I pause.
Mainly because I’m really, really damn tired.