Up until now, all of my health posts have been written with fellow sufferers in mind, people who are also chronically ill with ME. Today, I chose to write directly to the fortunately healthy. It's International ME Awareness Day and to help people better understand what it's really like to live with this illness, I've described a day in the life.
If you don't suffer from chronic illness and would consider yourself healthy, please read the following and answer the questions at the end imagining that it is happening to you - you're an ME sufferer and this is just a typical day in your life.
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- 1am: Your 'nightly routine' began at 8pm, you did everything your occupational therapist recommends to improve your dysfunctional sleep - you had a warm bath, you turned off your phone, you read a chapter of your book, you meditated and you listened to a relaxation tape. But ME doesn't care that you've followed all of the rules, sleep disturbance is a major symptom and so you're wide awake. Your mind races uncontrollably and the adrenaline that got you through your day as your body couldn't produce energy is coursing through your veins, making your skin buzz and your head pound. You're an insomniac, and have been for years. The sleepless nights make your already disabled body feel broken.
- 3am: You're still awake, and have spent the last two hours tossing and turning. As a result of your ME you also now suffer from fibromyalgia, a pain syndrome that increases your sensitivity and decreases your tolerance. Things that shouldn't be painful are extremely painful. The duvet on top of you feels suffocating, the heaviness is too much for your body, it hurts, and so you lie on top. Your weight on the mattress feels as if you have weights on your chest, pressing you down. The pain of it is so intense that it's close to unbearable, but you have to bear it. You can't take any more medication for another hour.
- 5am: You manage to fall asleep. It's broken and you wake up three times an hour, sometimes freezing cold and shivering and others boiling hot and sweating. Your temperature control doesn't work properly like a healthy person's. You have restless leg syndrome which feels as if hot, fiery ants are crawling around inside your legs. There's nothing you can do to help ease the awful sensation, so you try to sleep despite the pain.
- 9am: You wake up, having had four hours of sleep. Most nights, you aren't lucky enough to get that many. Anyway, it doesn't matter how much sleep you get as it's always unrefreshing, your doctor calls it 'non-restorative sleep'. It doesn't matter if you sleep for four, eight, twelve or sixteen hours, you feel as if you haven't slept at all.
- 10am: You lie in bed, trying to muster the strength to sit up in bed. You've been trying for an hour now. Your body feels three times its real weight, as if you have sandbags attached to every limb or they've been filled with concrete. You're exhausted, and you've been awake for sixty minutes. It's the start of your day, and you're ready for it to be the end.
- 10.30am: You manage to sit up in bed, but it makes you feel woozy and sick. Your pillows aren't comfortable, but you can't rearrange them as your arms are paralysed. You want to move them, but physically can't - the only feeling you have in them is in your fingertips, and even those feel numb and tingly. Your back is agony from so much bedrest and you worry that your legs will give out too due to lack of movement, but there's nothing you can do.
- 12pm: After an hour and a half, you can move your arms. Slowly and carefully, you sit on the edge of your bed and attempt to stand up. Your stomach lurches, your vision blurs and as you lean against your wall, a wave of nausea crashes over you. You black out, faint and injure yourself by falling and hitting your head often, but today you've been lucky. Sitting back on your bed, it's clear that getting up isn't an option. It doesn't matter how much you want to, ME has decided that you're staying in bed for now and that's the end of it - you don't get to choose how your day goes, ME controls every second.
- 2pm: You're hungry. You haven't eaten yet, but you don't have the energy to roll from one side of the bed to the other let alone get up and make a meal. You stay hungry.
- 4pm: You check your phone. The light makes your head throb and feels migraine-inducingly bright. Your eyes are too sensitive for natural light, so your blackout blinds are drawn and your bedroom is dark. You wish you could watch a film on your laptop, but the screen would feel blinding. You're bored. You aren't allowed to watch films that are too stimulating or that you haven't seen before, as the brain power needed may use a lot of energy. You wish you could call your friends, but it'd be too loud for you to bear and besides, you'd probably end up with a migraine due to over-exertion.
- 6pm: Your family return home from work, but even though you've been alone all day, they can't come and sit with you as you're far too sensitive to noise, sound and smell. You wouldn't be able to have a proper conversation anyway, as your thoughts are muddled by 'brain fog'. You can't think straight or form a coherent sentence, and besides, you've used the energy needed for speaking just by existing today. Talking is a privilege.
- 7pm: You're brought dinner and you try to eat, but a normal fork feels like a gardening fork to you. You don't have enough strength to pick it up, or cut your food. You manage a few small bites, but it only makes you feel worse. You want to eat more, but can't.
- 7.30pm: Something is wrong. Your energy levels are depleted. You did next to nothing, but it was still too much for your body. You curl into a ball on your bed. At least you aren't having a seizure, but it feels like you don't have the energy to live. Like your heart doesn't have enough energy to beat and your lungs don't have enough energy to breathe. This has happened every day this month. You think, "how can I be so ill and not be dying".
- 8pm: It's time to start your 'nightly routine' again, so you try your best to do everything you can in the hopes that tomorrow will be kinder to you, tomorrow will be better.
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Your Day
a) Do you feel good about your day, or bad?
b) On a scale of 1-10, how would you rate your day?
c) How do you cope when every day of your life is like this?
d) How do you feel knowing that every day for the rest of your life could be like this?
Your Illness
e) Would you be hurt if someone said that you were 'just lazy and workshy'?
f) How would you feel if your family and friends didn't believe that you were really ill?
g) Would you try to raise awareness for ME, with the hope that more people will be able to understand your illness and how life changing it can be?
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You can be yourself again now. Congratulations, you are no longer an ME sufferer!
Sadly, sufferers don't have that option and for then, there is no easy way out. Many ME sufferers have lived every day like this for years - some two, some thirty. They wake up every morning not knowing if their days will always be like this, if they'll ever get better.
Bear in mind that this is just one day. Levels of disability and hundreds of symptoms vary with each sufferer. Thank you for taking the time to read and answer some of the questions that ME sufferers ask themselves daily for yourself. Many people don't know what ME is or don't understand it - thank you for helping to change that.
