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MumsnetGuestPosts (MNHQ) Mon 11-May-15 16:21:34

Guest post: M.E. Awareness Week: "No, I'm not 'just tired'"

As M.E. Awareness Week kicks off, Catherine Hale shares her experience of living with the illness

Catherine Hale

Limited Capability

Posted on: Mon 11-May-15 16:21:34


Lead photo

'M.E. is so poorly understood that doctors can't even agree on its name'

Imagine this scenario: you're woken in the night by chest pain. When you get up the next morning to do the kids' breakfast your legs are like lead, your vision is blurred and when your seven-year-old asks for Coco Pops your brain reacts as though they've asked you for the cubic volume of the moon.

Suddenly you can't stand up any more and everything around you disconnects. You are alone with the kids and you can't get yourself to a doctor. Would you call a cab or an ambulance to take you to A&E?

I wouldn't call either, because I know there's no point. I have the illness known as M.E. or Chronic Fatigue Syndrome. This scenario is a regular occurrence for me when I have a flare up. Yet even when I've been taken to A&E, unable to move or speak, doctors draw a blank as to what's going on inside my body. I get sent home with a paracetamol and a pat on the head, if I'm lucky.

M.E. is so poorly understood that doctors can't even agree on its name. It stands for Myalgic Encephalomyelitis, but the medical establishment prefers the term Chronic Fatigue Syndrome. There is no test for it, let alone a cure, and it affects about 250,000 people in the UK.

The reason we sufferers hate the term Chronic Fatigue Syndrome (or CFS) is because the name is like a whitewash. People are disabled by M.E. to the point of losing the ability to walk, drive or read a newspaper - even to the point of needing tube feeding. But the label CFS implies we are just "tired".

As my lovely friend M confessed to me the other day, after five years of our daughters being best friends: "It's hard to understand you guys with M.E. because when you say you're tired, it's like, 'well we get tired too'."

I'm one of the lucky ones. My disability may be invisible, but the really invisible people with M.E. are those you never even see or hear about, because they are confined to a bed in a darkened room.

Welcome to planet parent. How many other mums I know are thinking the same thing?

So what's it really like to live with M.E.? Well, think of your mobile phone, which probably runs out of charge by the end of the day. People with M.E. are like mobile phones with knackered batteries that only charge up to about 10, 20 or 30 percent. After the equivalent of sending a couple of texts and checking the weather app our battery dies and we crash. That could be simply having a shower and getting dressed.

Friends see me walking my girls to school and smiling at the school gates, but what they can't see is that the school run uses up about 60% of my energy charge for the whole day. Do the maths, and that doesn't leave much for doing the dinner, the homework, the bedtime, the washing and the pre-teen dramas that command my daughters' full attention.

I hate having to explain that I have a disability that prevents me taking my girls to Brownies after school, joining the camping weekend, pitching in with the school fair or helping friends out when they're stuck for childcare - because for that snapshot in the day they see me looking entirely "normal".

And I'm one of the lucky ones. My disability may be invisible, but the really invisible people with M.E. are those you never even see or hear about, because they are confined to a bed in a darkened room for years and sometimes decades at a time.

Every time I feel sorry for myself because I'm a disabled single parent I think of Jenny, and others like her. At 29, beautiful, talented Jenny longs for her first kiss and the chance to be outdoors with her friends, because a very severe form of M.E. has cruelly stolen her youth from her. M.E. doesn't usually kill, but it can take your life away.

When I was 23 my M.E. was as bad as Jenny's. My 'battery' wouldn't charge at all, leaving me virtually paralysed and intolerant to all sensory stimulation. I couldn't sit up, feed myself, hold a conversation or even listen to the radio. My mum and dad had to care for me as you would a newborn baby. I inexplicably recovered. Today I am 'only' moderately ill, whereas Jenny has remained in this state (which you can barely call living) for the past 12 years.

Every time I get down about all the things I can't do with my girls – take them to the park, sometimes even read them a bedtime story – I remember there are others who would give their right arm to have even the halfway recovery that I've had. And the miraculous fact that I've had children at all chokes me up inside.

So next time someone tells you they have M.E., take it as a compliment that they've even shared this information with you. Assume nothing from their appearance about their day to day life. Don't tell them about how you get tired too. Above all, remember: for every person you encounter with M.E., there's another one who has disappeared from view.

By Catherine Hale

Twitter: @octoberpoppy

claraschu Mon 11-May-15 17:33:35

My daughter has ME, but is slowly recovering (I think). It is a horrible, isolating, debilitating, terrifying and very poorly understood disease.

I am so glad that ME is getting an awareness week. Sufferers from this horrible condition need understanding and sympathy; the disease needs to be studied and have money put into research.

People need to know that having ME is like having the kind of flu where you carefully plan your route across the kitchen to save yourself 2 steps on your way to the loo, because the extra 2 steps would be too much for you. That is if you are well enough to get up at all.

It has another new name now, by the way: SEID.

madhairday Mon 11-May-15 17:37:07

Great post. The mobile phone analogy is good - I've often used the spoon theory but quite a lot of people don't seem to 'get' that one. I don't have ME but a different chronic disease but has similar affects with exhaustion and pain. I think it's hard for people to understand anything that affects your life in such a huge way when they haven't experienced it, but plenty of people have empathy anyway thankfully. It's soul destroying when you hear those kinds of comments - I get tired too, I'm too busy to be ill etc etc.

I thought more than 250,000 had ME in the UK though. Explains some of the shortage or research I suppose sad

Thanks for the post.

PausingFlatly Mon 11-May-15 18:11:45

Thanks for this. I wasn't even aware of, um, the awareness week.

claraschu that's a great description.

I was thinking the other day, "How could it ever have been important where I kept washing powder? How is it possible that for several years those extra two steps to fetch it - and two steps back! - were make or break as to whether I could do laundry?"

I still have to limit trips up the stairs or to the bottom of the garden. But I can move round one floor pretty much with impunity. It feels goooood!

I'm so incredibly lucky to be recovering.

thanks to everyone affected and their families.

stareatthetvscreen Mon 11-May-15 18:16:04

great post smile

claraschu Mon 11-May-15 18:43:15

I forgot to say that was a great post, OP.

Cocolepew Mon 11-May-15 19:07:03

What's SEID stand for?
I have a chronic disease and don't understand spoon theory blush. I like the mobile phone explanation.
Wishing you well op flowers

brightwell Mon 11-May-15 19:19:26

My daughter has M.E. she was diagnosed almost 3 years ago, she first became unwell while studying for A levels. I feel as though she's been robbed of her "present" and her future. Currently life is good for her, she's trying very hard to pace but I'm waiting for the next slump.

Butterflyface Mon 11-May-15 20:10:39

I was diagnosed with ME in 2009, a few months after having my fourth child. Since then, I've been diagnosed with Fibromyalgia, Undifferentiated Connective Tissue Disease, and possible lupus, but I still relate mostly to the diagnosis of CFS/ME. I was imprisoned in our flat for 3 years, having to rely on my amazingly understanding husband to do everything physical for the 4 dc's, and for me, while working full time. (DC's 3 and 4 are also on the autistic spectrum, so that in itself has been a challenge).
I started recovering this past year, and as soon as I was able, I got a full-time job so that I could help us get out of the financial mess this illness has got us into.
People at work don't understand why I enjoy washing up their cups, or making the tea, but it's simply because I was unable to do this for so long that I treasure every moment I can stand, walk, put on a kettle, and do a little something to make someone else's day a bit better.
My kids miss me an awful lot during the day, but I come home to spend time with them, knowing I've done my bit for all of us to have a decent home.
I still need support, when my husband is away, so that I can keep things functioning at home, but it means we can have a tidy, clean home, and that I can continue working when he's away, and that he can get his work done when he's here.
I worry for all the people who have to live with this still, that any support they may be receiving now will disappear with the cuts. When we had no support we had piles of unwashed clothes around the house, bins full of nappies, unwashed sheets and dirty floors, and we were ashamed of how bad things had got, but couldn't change things back to how they had been when I was well. Social Care's support and understanding changed our lives, and I will always be grateful for that. Their assessment of our family's needs meant that we could care for our children and our home how we used to, before I was ill. And yet, I still feel like a fraud when people see me get out of my car with my blue badge on the dashboard, and with no stick, no visible sign of my illness, they naturally judge me as a fraud. They don't know that without that badge, I would be in bed tomorrow, paying for the extra 50 or 100 yards of walking.

Thank you for your post.

AltogetherAndrews Mon 11-May-15 20:30:27

Excellent article. I'm currently just starting to manage a normal (ish) life, and know I'm so lucky to be recovering. Weirdly, my CFS started with a severe flu bug, and my recovery seems to have followed another bout. It's like the second flu has "reset" my body. I don't know if that's even possible, but since no one seems able to explain why I was ill in the first place, I don't see how they could rule this out.

I often use the wall metaphor to explain the disease, since most people are familiar with the idea, that when you run a marathon, you hit a wall. I explain that for normal people, they live a long way from the wall, and it takes a lot of effort to hit it, but that I live in the shadow of it, and that on a bad day, it takes rediculously little effort, and I hit it. On the worst days, at the beginning, it took no effort at all. Once I hit the wall, that's it, I'm done, and if I try to force myself past it, I will be wiped for weeks, months. Recovery feels like gradually putting some distance between me and that bloody wall. I'm terrified of it coming back.

awesomeness Mon 11-May-15 20:31:06

I have ME amd hemi migraines and suggest reading 'the spoon theory' to people who say they can't understand what it's like

CrapBag Mon 11-May-15 20:51:38

What a great blog.

I have cut and pasted part of it as my Facebook status (as a quote) to explain what it's like. That mobile phone analogy is brilliant and such a good way of describing it. I can never think of a good way and tend to um and ah.

Floralnomad Mon 11-May-15 20:58:47

My dd (15) has had ME for about 3 years ,it's very debilitating - we decided to HE so that we could ensure that she has a good quality of life rather than just a daily struggle with trying to access an education - it was the best decision for us and although my dd has missed out on being a 'normal' teen we do loads of stuff ( when she feels able) so that at least she will be able to say she enjoyed her teens / childhood . Great post OP .

Leopardlady Mon 11-May-15 21:13:32

I am a very lucky lady as suffered from ME for just over 10 years, from 17 to 28. I suffered badly and my mum was amazing at looking after me despite the condition not being accepted by the medical profession.
I am now a mum of two, heading for my 40th birthday and able to lead a pretty normal life. I do hit a wall earlier than most if my friends though, always been a little concerned I could get ill again, but I do enjoy life more than many who have no idea how hard/ impossible life can be.
I am glad there is an awareness week, but really hope more research is done to diagnose the different parts of this nasty mean condition.

Great post thank you

Stinchcombebabycafe Mon 11-May-15 21:35:48

I'm also a sufferer, and although I suffered mildly for many years, I had a severe worsening of symptoms 3 years ago, since when I have been formally diagnosed. The bean theory is also useful, explaining how dangerous it is to borrow energy from the next day.
I'm 60, not working; the highlight of my week has been running the local parent and baby group - but I can't do that any longer. Thankfully, ME has only stolen my middle and old age - at least I had my youth.
18 months ago, on his 66th birthday my husband had a double cardiac bypass graft. Two weeks post operative, he was able to walk faster and further than I can.

AuditAngel Mon 11-May-15 22:22:36

Really informative. I am meeting up with an old school friend this week after almost 30 years. She has ME, hopefully now I will go a little more aware of his hard her life may be.

I also have a (different ) friend with lupus, she also struggles.

Teacuptravells Mon 11-May-15 22:50:18

I have ME and really stuggle. My husband is often away and in that week the house becomes more and more chaotic. Its eased since my smallest started preschool.

I really miss being productive. I have a good mind and it wants to be busy and full of ideas but my body just wont play ball, and I find basic housecare and childcare overwhelming.

I would love to return to work but it really isnt possible. Im in bed on and off ! I dont think anyone gets it though so I dont really talk about it and accept they just see me on the school run and dont realise that means Im knackered for most of hte morning!

JoanHickson Mon 11-May-15 23:12:13

I can empathise. I have dysautonomia diagnosed as a secondary to a connective tissue disorder, which is often mistaken for ME/cfs, it's a challenge dealing with symptoms and people who don't understand.

eleanoralice11 Tue 12-May-15 00:21:42

My Mum had this, such a horrible thing to have. It's really quite tricky to understand what they're going through, one day she was full of beans, the next she couldn't manage a 2 minute phone call with me.

She found alternative medicines helpful and completely revamping her diet, no alcohol (which was limited to a glass at dinner sometimes), organic, super healthy foods, and just listening to her body. I'll have to find out what else helped her and post it! �� to everyone x

icklekid Tue 12-May-15 05:41:23

I was diagnosed with cfs at 25 , I'd just got married was a very active person and lived for work as a primary school teacher. I volunteered running a rainbows unit and various other charities. Suddenly I couldn't do any of it. I couldn't get out of bed some days. I went from running 5k to not being able to walk to the end of the road to post a letter. Somehow life gets manageable and I am incredibly lucky that with support I was able to work again and now have a child. The sleep depravation from a new born hit hard and the combination of cfs and this meant I felt depressed. The only advice I have is surround yourself with people who understand And take each day at a time

Adarajames Tue 12-May-15 06:10:26

ME Stole my life, my chance to have a child, my future, my love and talent at sports, my youth; and now this evil government have stolen any hope and chance of managing to live anywhere near a normal anxiety free life with the constant sniping at and about people who can't work / need extra support due to disabilities, and right now I'm teetering on the edge of a deep black hole and wonder why or if it's worth all the pain, exhaustion and anxiety sad

Rachie1986 Tue 12-May-15 08:06:06

Brilliant post :-).

I have mild m.e, have done for 12 years now. Currently work part time and have a 16month old daughter. Am in a bit of a bad phase at the moment, but generally not too awful and for that I am so grateful.

Treaclepot Tue 12-May-15 08:14:13

Adara so sorry to hear you are having such a bad time. You are not alone in your despair at the r-election of this vile government. Those of us that know people who have been most affected by the cruel cuts and drip feeding of hate towards disabled people are even more shocked that anyone could vote them in again.

I spoke at length yesterday with a friend who is slowly dying, she was bereft last week couldn't believe anyone would vote for the people that had added to her hardships. But she decided that she refuses to be ground down anymore by the bastards. And to use any energy she has at making her voice heard on social media.

She has been doing a lot of 'mindfulness' meditation and it hugely helped her overcome the pit of despair she was in when she realised her condition was terminal. It's really worth a go. It is amazing for anxiety.

ME is a cruel Illness both mentally and physically. But many people recover. I had the fucker for 4 years and now am completely well. Though if I eat even a morsel of wheat I am ill for a week. I thought it would never happen.

This is a shit time for you and many others.

It will eventually get better, it may take a while but you will not feel as bad as you do now in a week, a month or a year. Don't let the bastards grind you down.

LotsaDots Tue 12-May-15 09:13:25

A poem by Bill Clayton:

M.E. and ME

I ran, I swam, it’s who I am
I laughed, had fun, enjoyed the sun.
I was doing such when this begun.

Felt a chill on a good warm day
Aches and pains that won’t go away
Like the flu, I heard it said
But arms and legs are made of lead.

Can’t remember what I was about to say
Simple words have gone astray
Can’t make a choice between two simple things
Someone else is pulling my strings.

I try to read, but it only drains
Focussing harder, just scrambles my brains
The dark clouds descend, lead to despair
The weight of three men sinks into my chair

No outward sign to give a clue
No bandage, mark, no black and blue
Strange, it seems I always look well
Look from this side, then you could tell
Remove the mask for a day to see
The evil face of this beast called M.E.

Like a thief in the night it takes away
Your hope, your strength, your friends
Your likes, your loves your chance to play
And never makes amends

All we want is to be believed
And trusted when we say
Hey GP, can’t you see
We didn’t ask to be this way

This is real, a real big deal
As big as the ‘popular’ ills
It needs to be taught, given some thought
Not just a bundle of pills

We don’t have a choice, we need a real voice
Give us some hope TODAY
So don’t be doubting, we’re gonna keep shouting
We’re just not going away.

By Bill Clayton

LotsaDots Tue 12-May-15 09:45:35

Great post, I have ME too, I feel very lucky that I'm not as badly affected as some others, infact most people in my life wouldn't know I have ME because I feel stupid having to explain. life is often a struggle but there's no other option but to carry on struggling. Keeping active helps, for me, walking is good and helps me to beat myself up a bit less when I can't get it all done.

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