Living With M.E. Series …. a 17 year old boy who is living with M.E. for the past 5 years

“Most days I have literally no energy to do anything but breathe.”

“That’s about it really. I don’t do anything else. I cant.”

With May being International M.E. Awareness Month and with the #MillionsMissing campaign taking flight, it is the hope that we can bring the lived experiences of people with M.E. to the fore, in an effort to highlight the illness, the symptoms, the lack of care, the neglect, the isolation, the lack of knowledge, the utter effort it takes to get through a day.
Just think about it.  As parents we worry about our children when they get a cold or a ‘flu.  We worry about their safety when out of our sight, we worry about their homework being done, their next exam, their school grades, their hobbies, their interests, the amount of time spent in front of a TV, etc. etc.  So many things to worry about ….

For this family, the worry is completely different and overwhelming and never-ending!  We get an insight into what they have to deal with – day in, day out.
This is why we MUST get the help needed for people with M.E.  We HAVE to ensure that our government and the @HSELive take responsibility for the health of M.E. patients and provide the necessary care and treatment.  It needs to happen NOW.

The time for ignoring such seriously-ill patients is over.

This is the first guest blog post on Living With M.E.  I am delighted and grateful that this young man has been brave enough to give his insight into this world.
My hope is that the world for M.E. patients improves in the very near future so that he, and the other children like him, have a future – a future with the normal worries for him and for his parent.

“A Day In The Life Of A 17 year old Boy With M.E.”

I have been ill since the age of 12 years. I’ve now just turned 17. I live

with my Mam and there is just the two of us.

In 2012 I contracted a virus from which I never recovered. I had just

started secondary school and a few weeks into it I collapsed at school

and have been ill since. I felt like I had the flu every day and I had

little or no energy. I had a headache all the time. I regularly vomited –

sometimes for weeks at a time it wouldn’t stop. Everything I ate

would just come back up. I had terrible all over pain and muscle

spasms.

I spent a lot of that first year in and out of hospital as I just kept

getting worse and worse. Eventually I was diagnosed with Post Viral

Illness/CFS. Eighteen months later I saw an international UK

Paediatric M.E. specialist and he confirmed a diagnosis of Myalgic

Encephalomyelitis.

I have so many symptoms, its hard to keep track of them. I have

difficulty processing information and have poor concentration. My

short term memory is very bad. My eyesight has deteriorated and

sometimes I cant focus at all as everything is blurry. Some days I find

it very hard to even speak. I don’t always have enough energy to

communicate.

I have terrible gastrointestinal problems which I don’t want to go

into here except to say that I vomit all the time and am very limited

in the foods I can eat. I have chronic bone and muscle pain. I get very

painful muscle spasms and when this happens I often cant walk for

days afterwards.

Most days I have literally no energy to do anything but breathe.

So this brings me to describe what a typical day for me is like.

Typical Day

At the moment I am waking up about 9pm. I haven’t been able to

sleep at night since I became ill so I sleep during the day.

The first thing I am aware of is pain and nausea. My bones are so

painful that sometimes I can’t get up straight away to go to the

toilet, unless I get some help. Most days my head hurts a lot too.

On my worst days I cannot move out of bed, I can’t eat, can’t sit up,

the room must be in complete darkness because otherwise it will

hurt my eyes and make me feel sick. Any noise causes pain and

concentration problems. I sometimes wear ear defenders to block

out any noise. In addition some noises will set off my constant

tinnitus to a high level and makes everything unbearable.

I am unable to eat anything for several hours after waking because of

the nausea. On the days when my stomach is very bad, I have to eat

very plain foods as there is a better chance of it staying down or at

least it stops me vomiting as much.

On other days when I am more able to move it can take me a long

time to get out of bed. This is because of the chronic pain I am in.

Most days I find the stairs very, very difficult to negotiate. I try to

base my whole day around only going up and down the stairs once as

the pain in my muscles and joints is excruciating. Some days I don’t

manage the stairs at all.

I spend all of my time in my room with the curtains pulled tight. I

never use a light in my room as it would just hurt my eyes.

On good days I can spend some time on my computer. I like to learn

new things and I try to learn as much as I can via the internet. I love

watching documentaries too.

Sometimes I make plans to have a shower or brush my teeth or

shave. Most days those plans come to nothing though as I don’t

often have the energy to do any of those things. Taking a shower

would wipe me out totally and I absolutely couldn’t even think of

having a shower on my bad days. I brush my teeth in my room with a

glass of water if I cant do them in the bathroom.

I overheat all the time as well so my room is like a fridge, according

to my Mam anyway! The window is always open and the fan is

always on. I just feel like I am boiling up inside. Funny thing is every

now and then I can switch from feeling boiling to feeling freezing and

it makes to difference what the room temperature is. Even if it was

hot in the room I can still feel freezing or vice versa.

I dread hospital appointments as Im often too ill to attend them and

they take huge amounts of energy that I don’t have. When I know I

have an appointment coming up I worry about it for ages beforehand

because I worry that I cant make it.

That’s about it really. I don’t do anything else. I cant.

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