Tuesday, 13 May 2014

A Day in the Life of M.E - Guest Post

Hello :) My name is Lizzy, and I used to have severe M.E. 
I wanted to share with you a typical day in that world. My world. (This will be different for everyone, but you get the idea.) I’m writing this in a truthful way. Yes it might be depressing, but unfortunately it’s the vast truth, and many people have it worse than this. I have included the details. The details that hardly anyone shares. I got ill when I was 14. I’m now 19. It’s embarrassing. But I think this is vitally important. 
A photo to show how a bit of make-up can disguise the effects of M.E

Waking up around 11am, after 12hours sleep, I feel completely wiped out. It’s as if I haven't slept at all. My body aches, I feel exhausted, I have a headache, I feel dizzy, and I’ve only been awake for 2 minutes. My skin is pale, and I look and feel like a ghost.
Now begins the day. 
I need the toilet. I really need the toilet. I have very little energy. I sit up and steady myself for a moment, so I don't pass out. I get down on the floor, and crawl the 5 metres to the bathroom. I have to stop and rest along the way. 
I get to the toilet, and pull myself up onto the seat. I feel tired, I feel dizzy, but I go. I flush the toilet, get back onto the floor and wash my hands with hand sanitiser, because I can't stand at the sink. I rest on the floor for a few moments. I crawl back to the top of the stairs. Rest. Rest. 
I consider whether I am well enough to make it downstairs today. I decide I am, but I wasn’t always this lucky. Making sure there is someone with me in case I fall, I begin the descent. On my bum. One stair at a time. Going down the stairs hurts. Everything hurts. But I’m lucky to be able to do it. 
After some time, I reach the bottom. I stand up. My legs are weak; it takes all my strength to stand. I hold onto the railing, or the wall, or my crutches, or my family, and make the slow journey onto the living room sofa. It’s only 6 metres from the bottom of the stairs, but it feels so much further. I feel so relieved when I arrive at my destination. A much earned, and much needed rest. A rest turns into a sleep because I just cannot keep awake. I start talking, and fall asleep mid sentence. 
M.E can cause a person to have sensitivity to light, so a lot of sufferers use eye masks to keep light to a minimum

After a sleep, I’m brought my breakfast. The next task of the day. I’m propped up with pillows so that I can eat. I take a spoonful, but not before taking my medication. This morning I take 8 pills. These are for the headaches, the pain, and the sickness. They will not cure me, but they relieve the symptoms a little.
Medication can help to control various symptoms, but there are no medications to cure the disease

So I eat my breakfast. I eat slowly, so as not to tire out too soon. I eat slowly so that I will have energy to digest my food. I enjoy my breakfast. But following it, I get bloated. My stomach swells. I feel sick. 
Someone comes and switches on the TV for me. I watch it. But only programs that I have watched before, watched many, many times before, because I can’t concentrate on unfamiliar things, and they are too tiring. 
The rest of the day is spent doing this, and sleeping. Sometimes if I’m well enough I might write a short letter to one of my friends/pen pals. This consists of maybe one line. 
It makes my day, even week, so much brighter receiving post, though I do not receive much anymore because I can't reply to people quickly. Some people are amazing and don't expect replies, they keep sending letters regardless. 
My mum brings me lunch, and snacks and drinks throughout the day, because I can’t get up to get my own. When I’m in pain, she massages me, or gives me Reiki, which helps calm my restless legs a bit. 
Next is dinner, which, if I’m well enough I may sit at the table for, though this rarely happens because I can't sit up in a chair very easily. Dinner takes energy to digest. I’m tired. I haven’t got dressed, I haven't got washed, and I haven't brushed my hair. 
After dinner, I lie flat on the sofa again, and attempt to watch some TV with my family. This isn’t always possible, but I try to join in. I know this is a huge strain on them too. 
Before bed, I am brought a glass of milk - lacto free because I have food intolerances because of my M.E. With this, I take 6 tablets. These are for pain, and to help me sleep.
I rarely get bored, because I don’t have the energy to. What I do have though, is a sense of longing for life. For work, for school, for social activity, and most of all, to walk or run. In the rare occasions that I leave the house, for example for a hospital appointment, I need to use a wheelchair because it is so exhausting to walk, even a few metres. I just want to run in the rain, splash in muddy puddles, laugh, and not be tired or in pain. I wish people would come and see me, or take me out if I’m well enough. I have lots of wishes. 
A lot of people with M.E will need to use a wheelchair/mobility scooter at some point

So, I am supported to walk slowly the 6 metres to the base of the stairs. Every time I get here, it feels like I have a mountain to climb. I start crawling, one step at a time. Rest, breathe, rest, crawl. And repeat. It takes me 15 minutes to make it to the top and I lay flat on the floor in an attempt to regain some energy. I’m fully aware that before bed, I need to make it to the bathroom to brush my teeth, and go to the loo. I calculate this. From where I am laying, it is 3 metres. I can do this. I do it. I sit on the toilet lid, brush my teeth, go to the loo, get back on the floor, and rest. 
Now to make the final journey of the day, back to my bedroom, back to my bed. 5 metres. I do it, I crawl, and I’m nearly there, and my body is screaming, but I keep going. I’m here now, this bed, snuggled in pillows and blankets and duvets, and soft mattress toppers. 
I take a wipe from my drawer, and give myself a wash all over. My hair is matted, but there’s nothing I can do about this. It hurts too much to have it brushed, and I don’t have the strength in my arms to do it myself. Maybe tomorrow mum will wash it for me. Maybe. 
So now, I’m ready for sleep, and inevitably, insomnia will set in. This often happens, which is why I take the medications. 
A key symptom of M.E is unrefreshing sleep - you wake up feeling like you've run a marathon and not rested after

Night all, sleep tight, xxx
Written by Lizzy Horn, who was severely affected by the illness M.E/CFS for 3years, and has had it for a total of 5years.

This is just an account of one person’s experience of severe M.E. Everyone is different – some are so poorly that they need to be tube fed, while others might not be as poorly and can get out of the house, or even work/volunteer for a few hours a week. The severity of M.E varies so much and can change incredibly quickly, so even if someone has been able to cope with work or study, it doesn’t mean that they don’t pay for it with symptoms For more information please see the Action for M.E website. 

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  1. Hi Lizzie you are so brave for writing this, and you've done such a great thing by sharing your experience. I know from my cousin having M.E that often the hardest part is people not understanding, thinking that you're 'just tired' and need to be a bit stronger - by writing this you're helping more people know what a debilitating illness it is.
    Best wishes
    Emily x

    1. Thank you for your message Emily - I will make sure that Lizzy sees it, as I'm sure it will mean a lot to her to hear that you've read it xx

  2. Thank you so much Emily for not only reading this all through, but also trying to understand, and saying such lovely things. Hope you're okay, Lizzy x