Hello and welcome to April’s newsletter. Hope you have had the best month possible.
2022 Carers Week nominations are now open. We are celebrating carers of ME sufferers during Carers Week 6th-12th June 2022 by sending them a special Bear Hugs Smile.
ME doesn’t just affect those suffering, it affects those around them who often have to take on the role of being a carer. We hope that by sending a special Smile we can remind them how much they are appreciated.
Find out more and how to nominate: www.smileforme.org.uk/carersweek
15 Smiles were sent to both ME sufferers and carers of all ages this month. The items included in our Smiles change all the time as we personalise them to each person’s likes and interests. Some of the items included this month were pamper items, cuddly toys, socks, colouring books, notebooks, art supplies, slime kit, board game, lego set, car cleaning kit, tea, sweets, chocolate and a chocolate cake.
Smile of the month
What’s made you smile this month? Each month we ask this question on social media and we love hearing the responses. We hope by sharing some of your smiles it can help others to find a smile too.
Share a story
Share a story is a segment in our monthly newsletters where we share a story from someone affected by ME to help raise awareness and remind others they are not alone. If you would like to be featured in an upcoming month please get in contact us with us firstname.lastname@example.org
This month’s share a story is by Paul Mc Daid. Thank you Paul for reaching out asking to share your story.
A few weeks ago, my dear friend Joan Mc Parland asked me to write a blog post chronicling some of my own experiences with ME. I wasn’t keen on the idea to begin with, as I tend to be quite a private person about these matters, and prefer only to write publicly about ‘ME politics’. Some of my friends (and particularly my long-suffering ex-fiancé) may roll their eyes at this last statement and say that I never stop talking about my illness, and I am in fact the definition of an extrovert. But, as most extroverts will tell you, usually this behaviour is a superficial diversion from what is really going on underneath. I keep my feelings and thoughts to my inner circle of friends, and can be quite shy about going public. However, when I do open up a little, I find that it is the best way to really connect with other ME sufferers, and it is also the way in which I invariably feel the most supported in return. And so, without any further ado…
I have four toothbrushes. Not one toothbrush and three spares; nor two toothbrushes, with two more toothbrushes in a toiletry bag; but four toothbrushes. All four in current use. Unless you are lucky enough to own four separate residences, or perhaps were a 17th century king of France, I think it is quite unusual to have four toothbrushes. The reason I have four toothbrushes is that I suffer from very severe noise sensitivity, and I must choose from the type of bristle that I feel I can tolerate on any particular day. You can tell this is going to be a very exciting blog post. Welcome to my life.
Noise sensitivity is by far the worst symptom that I have experienced from a long list of God-awful symptoms since falling ill with ME nine years ago. Hyperacusis, as it is called, impacts virtually every single aspect of my life, and informs my decisions and my activities almost every minute of every day. I am unable to have even basic conversations or social interactions, I am prohibited from listening to music or watching TV, and worst of all I can’t spend proper time with my kids. Even short phone calls are difficult or impossible for me, making basic administration a challenge, and meaning that I must rely on others to help. I am mostly trapped indoors because of the noise of the outside world, and even when inside I must wear earplugs plus industrial ear defenders over the top, to cope with background domestic noise like a kettle boiling or a toilet flushing. Sadly, these ear defenders are not as attractive as they sound.
I have occasional good days when I can see friends or when I can take my kids to the park, but these are rare. If I have a few glasses of wine at the weekend I can have a semi-normal social evening with friends or family, providing people keep their voices down and spend the entire evening catering to my needs. But even then, I always pay for it with days of screaming tinnitus, pain and swelling to follow. I am often left wondering if it is worth it, and if I am doing permanent damage to my ears by pushing, thereby making the situation worse for myself.
As far as I am aware, there is no treatment, and it is something I’m just stuck with. I therefore spend my days in a permanent state of noise-fear, and noise-avoidance . If I am exposed to too much noise (either loud noise or just extended background noise), I can have a severe flareup. During the flareups, even quiet background noise like central heating or clipping my nails elicits in my body a response similar to nails being scraped down a blackboard. It is the most nightmarish sensation I have ever experienced in my life. I would not wish it on my worst enemy. Flareups can take weeks to resolve, and so as you can imagine I do my best to try and avoid them. Psychiatrists may say that by avoiding noise I am making the situation worse for myself. They might argue that I get stuck in a loop of negative thinking and increased anxiety, causing the fear of noise to become more harmful than the noise itself. The problem itself lies in the anxiety, they might say. F*** the psychiatrists.
Back to the toothbrushes. This is where it gets exciting. I almost exclusively brush my teeth in the shower, because the background noise of the water helps drown out the noise of the toothbrushing. I turn the heat up ridiculously high so the searing temperature gives me a boost of adrenaline, which also helps coping with the sound. On especially good days when my tinnitus is low, and I know my ears are good, I will use the big guns – my electric toothbrush. I enjoy nothing more than being able to tolerate the low growl, and I luxuriate in tenderising my neglected gums and feeling my teeth get a proper deep clean – something I can only do perhaps once or twice per month. I then have two different manual toothbrushes of different stiffness from which to choose from depending on my sensitivity that day, or whether I am drunk or sober.
But my most commonly used toothbrush, my main man, is a specially adapted toothbrush which I bought online from Japan. This toothbrush is more like a sponge, with two thousand extra-soft bristles that were designed for brushing the teeth of pets. Yes, that’s correct. I use an animal toothbrush. Clever dentists from the Far East have designed a quiet toothbrush that make it less frightening for your horse, your parakeet, or your alligator to have their teeth brushed. An indirect benefit is that those of us with crippling hyperacusis can now brush our teeth with some comfort. This is the life of the ME patient – finding solutions, no matter how silly.
My four toothbrushes stand proudly on my sink every day awaiting selection. I may however design a utility belt, so that I can wear my four toothbrushes and carry them around with me, having each one within reach at all times. My oral hygiene has been a concern of late, as sadly I recently separated from my fiance and I am now single. I am therefore suddenly interested in the appearance of my teeth. Looking in the mirror today I decided I just have the teeth of a 41-year-old man. A 41-year-old man in 1870. I suppose my smile is the least of my concerns, but it has been difficult to keep my teeth whiter than white. On the occasions when my hearing sensitivity is not a problem, I am sometimes simply too weak to brush my own teeth. (Or anyone else’s teeth for that matter. Just to be clear.) Sometimes I have had to enlist a carer to brush them for me. At other times I just put a manual toothbrush in my mouth and chew it.
Flashy smile or no flashy smile, I think my ear defenders are my biggest obstacle, as they terrify anyone who I try to speak to. At least this is how it seems when I try to make occasional chitchat with a cashier at the shop, or on the very rare occasions when I can tolerate the noise in a café. It probably isn’t helped by the fact that I have lost some social skills as a result of being housebound for nine years. Before I fell ill, I was reasonably chatty, but I at least knew how to be a tiny bit cool. I knew not to jump all over strangers like a puppy dog, trying to forge instant friendships and bonds. I am aware that this is what Alan Partridge does. I have become Alan Partridge with added industrial ear covering. I guess I am a little bit like a thundercloud, weighed down with loneliness. Whenever a human being passes by in close proximity, I am unable to stop my loneliness from discharging itself upon them. Whenever I speak to the waitress in the nearby café she immediately becomes defensive and wary, as if rather than saying that brownie was lovely thank you, I have just said ‘thanks for the coffee CAN I MOVE IN WITH YOU PLEASE?’
A short anecdote I like to tell illustrates just how completely unsuitable I probably am for dating due to my noise problems. A few years ago I heard some loud noise coming from the street outside the home I used to live in. Generally when this happens, I will sometimes venture outside and speak to the gardener or the labourer who is making the noise, and ask how long that it might last for. If it is only going to be noisy for a brief spell I may take a shower to escape the sound for a few minutes. If it’s going to be an hour or so I may have to take some diazepam. Any longer than that, and I need to get dressed and take my ass out of Dodge.
On this particular occasion I couldn’t see where the noise was coming from by looking out of the window. I walked to the edge of the garden, and squinting down the street still could not see anything that could be responsible for the loud rumbling noise that was being made. Walking into the middle of the road, I peered to the end of the street and stood for a while wondering if I had the strength to walk the extra one hundred yards to investigate. As I stood there, a young schoolgirl came walking down the hill opposite my house towards me. As she turned a corner to pass me by, I gave her a small smile and a wave that I hoped communicated that I was not crazy. Hi there I was trying to say with my body language. Don’t worry about me. I’m just checking out the noise. You know how that goes.
She avoided my gaze, put her head down and hurried on. It was only after she had scuttled off into the distance that I considered my bizarre appearance. I was a forty year old man standing directly in the middle of the street, staring into apparently empty space with a look of fear and concentration on my face. I was wearing pyjamas, slippers, a dressing gown, sunglasses, my industrial ear defenders, and best of all, a baseball cap that said: WAYNE’S WORLD. It’s lucky that I was not arrested.
Realistically it’s going to be difficult for me to get a girlfriend isn’t it, what with the whole being housebound thing. Perhaps I can meet someone online. They say there’s someone for everyone don’t they? In the charming comedy novel The Rosey Project by Graham Simsion, we follow the ups and downs of professor Don Tilman, a likeable, handsome genetics professor with Asperger’s syndrome who is in search of love. The moral of the story is despite the funny adventures and mixes he gets himself into, in the end he still gets the girl. Hope springs eternal. There are people who get a kick out of caring for the weak. I think it’s got a name – Florence Nightingale syndrome. There might be someone out there for me right now – my soulmate, a girl who laughs at the same things I do and is attracted to men with teeth like Wyatt Earp. Maybe dating online I could find someone who is
stupid gullible desperate caring enough to give me a chance. I think on my profile however, I may omit the facts that I am unable to tolerate the sound of a kitten licking its own fur, and that I have the breath of a Japanese dog.
Ultimately, I don’t know if my noise sensitivity will ever improve. Of my other major symptoms, including severe physical fatigue and cognitive impairment, the last few years have been a story of slow progress, painful relapses, and more slow progress. But in general, I can see some improvement in many aspects of my quality of life. My noise sensitivity is the only symptom that appears to be getting worse. I don’t know if I have damaged an extremely sensitive part of the body, or if it is just another ME phase. Just another illusionary aspect of this unpredictable and cruel merry-go-round. If treatment becomes available for ME, I’m not sure if my noise sensitivity will respond. It is impossible to tell, because we don’t know what is wrong.
For now, like most ME patients, I cling to the good days, and look to the future with hope, as well as expectation. We have reason to believe that changes are afoot and that research is slowly answering questions about this illness. But I have a life to lead regardless. As painful and as difficult as it is, it is a life. It’s just different. A different way of living.
Paul Mc Daid has lived with severe ME/CFS for nine years. He is single and enjoys romcoms, cooking, and giving footrubs.
A special thank you to everyone who has supported us this month. Your kindness and generosity means such a lot because it enables us to continuing sending Smiles to those affected by ME. We are so grateful thank you.
12th May is International ME Awareness Day. It is held on that day to honour the Birthday of Florence Nightingale, founder of modern nursing. She established the Nightingale Training School, despite being virtually bedridden with an illness resembling ME/CFS. ME Awareness day is a day where people come together to help raise awareness.
Smile For ME is a charity run by people affected by ME and although we personally have a lot of experience of ME we don’t have any medical professionals involved in our Charity. Instead we raise awareness of ME through sharing personal stories from people affected. All our previous ‘Share a story’ pieces can be found on our website www.smileforme.org.uk/shareastory. Throughout the month we will be sharing some of them on our social media to help raise awareness and remind others they are not alone.
This year’s Blue Sunday, created by Anna, takes place 15th May. Enjoy some cake and join in online on social media with the hashtags #bluesunday2022 #teapartyforme2022. Thank you to those planning on supporting us, you can donate here: www.smileforme.org.uk/bluesunday. Hope you all enjoy Blue Sunday.