Tuesday, 29 September 2015

Living with ME - A Guest Post by Catherine


Today in our occasional series Hidden Illnesses, Catherine has joined us, to talk about ME which is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. ME affects an estimated 250,000 people in the UK, and around 17 million people worldwide, but many people know little about it. The message, as always is; just because you can't see it, that doesn't mean it isn't causing massive problems for the sufferer. Read on to find out more and perhaps help someone you know with this horrible condition. 



Okay where to start? I'll start with telling you what it is I have got and that is ME or to use it's technical name Myalgic Encephalomylitis. Some people also know it by the name CFS aka Chronic Fatigue Syndrome.


Auburn Haired Lady
I was first struck down by this illness at the age of 16. I went to my first day of college and got a virus which I didn't recover from for the next 7 years.  I had it at the extreme end back then and I was virtually bedbound and housebound for that time, not leaving the house once and spending most of my time sleeping. In turn this lead to me having another invisible illness, anxiety and panic attacks.  The last 3 years indoors was down to me developing agoraphobia because of being ill and stuck indoors so long. I started going back out at 23 after 7 years of not seeing the outside world or anyone outside of my immediate family. It took me a long time just to be able to be ok going out and then going out alone and inside I was a nervous, anxious, terrified wreck. But I pushed and fought, and I mean I put up a hell of a fight to try and get my life back and I did to some extent. I started a volunteer job for the British Heart Foundation which I absolutely loved. I did this for 18 months until it all started to come tumbling down again.
Last year I started to feel very unwell, but struggled on until finally, in the July, I went to my GP and had a ton of blood tests done; ecg, chest x-ray and all came back normal. Then the dreaded ME was mentioned again. I tried to pretend it wasn't that and tried so hard to carry on probably for a lot longer than I should, as pushing yourself with ME is the worst thing you can do.  That on top of stresses I had going on at the time lead to this relapse. In January this year I had to give in and say enough is enough and I gave up my volunteer job indefinitely as I needed to focus on trying to get myself better. This has been a very hard 9/10 months to get my head around and the different way of living or, as I say right now, existing. Doctors can't diagnose ME until the symptoms have been there for at least 6 months and all tests comeback clear. Then you may be referred to an ME clinic or rheumatologist for official diagnosis and help. No one knows for sure why ME starts but it's thought to be when the immune system has come under attack, ie; after a virus.

Under huge stress levels, etc, some people's immune systems decides to stay down

With ME, a lot of people say "oh you're just tired or been doing to much" or "you need a holiday to recharge your batteries and you'll be fine" or "you just need a few good night's sleep and you'll be fine". Yes, ok, these people maybe trying to "help" but because ME is so invisible, people don't/can't understand.  On the outside, at the most, you look tired, but in reality each day is a struggle. It's way beyond tired, it's utter physical and mental exhaustion from doing just little things, like showering or hoovering. The exhaustion levels with ME has been described by an ME specialist that someone without ME would have had to stay awake 3 days/72 hours solid, then at the end of those 3 days awake see how they function, to get the full effect. Except, with ME we aren't awake 72 hours. We either sleep too much in the day, so we can't sleep great at night, or we sleep all the time but never feel like we've had sleep. The main symptom is unrefreshing sleep; so I could sleep 12 hours and feel like I've had none. Add on top of that the swollen joints, the pain you're in every day, how doing anything like walking to the loo makes your heart pound and you feel breathless, your memory is like that of someone 90, feeling like you've permanent flu, ibs symptoms, digestion problems, depression, anxiety and the post exertional crash.
So, please, if someone says they have ME don't make them feel bad and say they just need a rest or there is nothing wrong with you.  Just because you can't see it doesn't mean each day is a just a struggle to get through for that person mentally and physically.

Here's a few links to help people out who think they may have this or just want to read up about it;

M.E. Association

Action for M.E.
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25 comments

Beautykinguk said...

I don't know a lot about ME or CFS as I often hear it referred too but it sounds so debilitating!

Louise said...

This sounds like a truly dreadful condition to live with - I hope you get a diagnosis so you can get some treatment that works for you soon. Big hugs(()) xx

Nell@PigeonPairandMe.com said...

So much more needs to be understood about ME. It sounds as though it's a crippling illness, really life-destructive.

Erica Price said...

I think ME suffers from misunderstanding because we all think we know what it's like to be tired or even to feel we are tired all the time, but that's not really what ME is like.

Cass@TheDiaryofaFrugalFamily said...

Thanks for sharing this, I honestly didn't have much understanding of ME at all x x

Jen Walshaw said...

I suffer from anemia, so do understand how tiring ME can be. I am sorry that people do not understand

angela hamilton said...

A very close family member has ME and know how hard it can be for them. I hope you find something that helps you x

Sarah Ebner said...

I think it's so hard for ME sufferers as there has been so much misinformation over the years. I have a friend who has had it for well over a decade and she finds dealing with people's attitudes very hard. We need to be far more open-minded.

Sonya Cisco said...

Such a difficult disease to live with. I hope you find yourself back in remission soon.

Sonia said...

Thanks for sharing, the more people who know about ME the better.

Penny P.S. and A Residence said...

I have a friend who has ME and I sense the huge frustration of being told to rest and not wanting to stop and of being misunderstood. Important post.

Michelle Twin Mum said...

Thanks so much for sharing this insight with us. Mich x

Sarah-Louise Bailey said...

It is such a frustrating illness the fact you don't know how you will be from one day to the next.. It is good people are starting to speak out about it.

Kara Guppy said...

i have a friend with CFS and when she is in remission she is great but it can suddenly knock her for six again without warning. Hope they find something that helps you soon

New Mum Online said...

I have had what I thought to be exactly this for the last 2/3 years but have veered away from having it diagnosed. I normally refer to it as chronic fatigue instead of ME. It's hard to live with and seems to inflict it on those who ordinarily would like to live life to the fullest - oh the irony. Thanks for the insight, into something I normally avoid reading or talking about x

jaime oliver said...

I dont know much about the condition but thank you so much for sharing

Gemma Allen said...

Thanks for sharing and raising awareness of this awful condition. I cannot imagine what you have to live with

Mums do travel said...

I'm so sorry that you're going through this. Thank you for sharing your experiences, it's helped me to imagine what life must be like for those with ME. I hope that you're feeling better very soon.

AngelEden said...

Unseen disabilities like this can be so misunderstood. I hope you have some compassionate people to help during this relapse of your symptoms

Charly Dove said...

There seems to be so much misunderstanding surrounding ME. It must have been so tough after 7 years indoors so it's sad to hear you've had to give up your volunteer job. I hope you get to concentrate on you now :)

daisybeebee said...

My friend lives with ME and it is such a cruel and debilitating illness. I hope you have the love and support of family and friends.

Jackie Kelly said...

I have PTSD, anxiety disorder and chronic depression and I totally understand that feeling of complete exhaustion. It is not just feeling tired, it is being completely drained and unable to even think clearly or even talk sometimes.

Catherine Gregory said...

Thank you everyone for your lovely replies. It's been a tough few months with the festive season and stress of it all so my ME is quite bad at the moment but I'm glad that even in a small way I got the message out there about ME and just how life changing and lonely a condition it is

Sandra Ralph said...

i know just how you feel, my eldest daughter suffers with fibro which is also a hidden illness and i have lost count of the amount of times i have heard that shes lazy or just needs a good nights sleep.I hate people when the judge

maria rogers said...

Ive had this for 10 years now and the hardest thing is getting people to understand, they all say , yeah Im tired too! It makes me want to cry sometimes because I remember before I got ill 'just' being tired, thats not what ME/CFS is at all, it ruiins your whole life, plus there is no cure.

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