To ask for a bit of support

[gendercritter]

Not really an AIBU (sorry) but I've been on MN for over 10 years and am hoping for some support from posting this in a high traffic area as over my years here I've offered other people advice and support for all manner of problems over those 10 years . (I recently deregistered and started a new account because of the data breech.)

Today is really important to me because it's a day that's set aside to raise awareness of a medical condition which has largely destroyed my life over the last 17 years. It's a condition which many people perceive as trivial but at worst it causes unimaginable suffering. A beautiful young woman, Merryn Crofts, died of it recently. She should have had her whole life ahead of her (Photo attached).

The disease is M.E.

I don't want your money or for you to sign a petition. I just would love for you to watch one of two things.

Either this documentary which features Merryn's story (it's 30 minutes) or about another bedbound sufferer which is only about 6 mins long.

That's it.

As a result of M.E, I have spent all of my twenties and thirties watching life out of my bedroom window.

I haven't been able to have children. I'm too ill.

I haven't been able to pursue a career despite being very able and hard working and having lots of ambition. I'm too ill.

I haven't had much in the way of relationships either because the men I've liked haven't wanted a disabled partner, or because I've been too ill to date.

I have had to give up several hobbies I loved. This sounds like a minor issue but my whole identity was caught up in those hobbies. I miss them every day.

I've lost friendships (but luckily these days have some wonderful new friends)

I've even lost the chance to be an involved aunt to my six nieces and nephews because I can't be around children for too long. They're too exhausting. They are growing up not knowing ke. My six year old nephew said to me recently 'why are you in bed all the time? It's not good to be lazy.'

I am lucky. I am moderately affected. I have something of a life. But it's a million miles away from the one I wanted and I have no guarantee I'll ever recover.

Thank you v much if you do watch either of the clips. It means a lot to me and the millions of people around the world who suffer from this disease.

And apologies again for abusing AIBU.

Such an awful disease. A close family member has it and it truly robs you of a full life. I'm so sorry you're going through this

OP - what would you like to get from this Aibu?

for you.

I've been drinking tonight, I'll try and watch those links tomorrow.

Sorry your illness has inhibited your life.

I didn't want to read and run but don't know what I can offer in support.

My sister has a lifelong disability and can't have kids so I get what it's like as much as an outsider can.

Thank you so much.

What would I like to get from it?

One of the biggest issues for people with M.E is people just thinking it's about being a bit tired. And everyone is tired. Most adults are. Certainly most parents. Who cares about a disease that makes you a bit tired?

So I'd just love a few people to come away from watching one of the clips realising that actually, at worst, it can be an extremely serious disease. I have a 39 year old (online) friend who has barely left her house since she was 12. She's just about invisible. Most of us are. I have another girl I 'know' and she's been housebound 25 years. She used to come on facebook a bit but hasn't now for 13 months because she can't tolerate her computer screen anymore. I know for a fact she'll only have seen her mum in that time. No doctor. No one else. Her gp has zilch to offer her.

If people know the worst of it, that's the beginning of a change. People will move towards supporting us in getting more biomedical research (it's beginning to snowball and they're discovering all sorts but we barely get any funding)

I just would love people to know we exist.

Oh and it's important to say again - I'm moderately affected. It's still horrible but I can leave the house a bit. Not lots. But it has given me some breathing space to have fun sometimes and certainly do far more than my severe friends. But it's them who need the exposure and support and attention.

For people to know that me sufferers are not fucking lazy.

A bit of understanding maybe.

I have a relative and a friend with ME.

Neither are lazy. They're good, kind, intelligent, hard working (were), and ambitious people. ME has taken their lives from them.

I would like to know a few things about this condition if you don't mind elaborating:

• What if anything makes it manageable? Do you have to really summon the strength from within to say go to Sainsbury's to buy some milk?

• How difficult is it to get diagnosed and for those that seek DLA are they usually written off by the DWP as being 'a bit lazy'?

• Is it hereditary?

It's a condition I know of, rather than about, iyswim. I do agree with you that it is seen as a sort of 'well everyone's a bit tired, aren't they' type of condition. Thankfully the tide seems to be turning.

I can answer a bit:

Tiredness - it's all encompassing. As though all one's body's batteries are completely out of juice. You refer to going for a pint of milk - sometimes just lifting a book is beyond the person.

Pain - things hurt. Just hurt. Mainly muscular. For no apparent reason.

Management - resting. Resting resting resting. A trip out will usually result in x days in bed.

Diagnosis - difficult. GPs are becoming more aware, but it is, as far as I'm aware, still symptom driven. It can be confused with other illnesses / issues. I have friends with hyperparathyroidism who've been diagnosed with ME.

Hereditary - I don't know the answer to this one.

Others will no doubt be along with more / better info.

What if anything makes it manageable? Do you have to really summon the strength from within to say go to Sainsbury's to buy some milk?

Some days getting out of bed is beyond me. Going out full stop is impossible. I have friends who haven't left the house in years. If they don't have milk in and let's say hypothetically have no one to help them access it, quite simply they would die from dehydration because they would be too ill to do anything otherwise. Many severe sufferers live with their parents into adulthood so have full time carers. I can push myself and summon the energy to do things like go out to buy milk because of being moderately affected but that might be the only trip I do out for 7-10 days.

Constant constant pacing and resting is what makes my life manageable. A trip out for 2 hrs = 3-4 days in bed trying to recharge my batteries so I can then go out again.

• How difficult is it to get diagnosed and for those that seek DLA are they usually written off by the DWP as being 'a bit lazy'?

It varies. It's improved in recent years. Some people face the most dreadful battles to get support, other people get DLA with ease but no medical support from their gp. I have one housebound friend. Her gp will not prescribe her anything. He views her as a scrounger. She hasn't got dressed in 2 years as last time she did she relapsed terribly. I won't describe her horrendous daily symptons.

• Is it hereditary?

It seems very likely that it might be. Everyone i know with it has a relative who had it.

This is a really good article in the Guardian today about M.E and our day of awareness.

I was just chatting with a friend about posting here. She's 36. She asked me to tell you from aged 14 to 26 she didn't see or talk to anyone except her mum. At all. She was too ill. Her entire life was ger bedroom. She didn't get any education post 14 because of being too ill although now she's done one A level from home. Another friend was made godparent to her friend's little girl. For 5 years she could only tolerate seeing her friend and goddaughter once a year and that was for 5 minutes each time. That was it.

Thank you so much if you've watched the clips. It means such a lot.

A bump for the evening crowd

I have M.E. and am currently in the NHS recommended GET (graduated Exercise Therapy) and CBT. I find them a bit hit and miss to be honest although I have gone from being bedridden to active for a few hours a day. I sleep for 14-20 hours a day to achieve this though.

The most heartbreaking thing is that I do have a son to has to live with my ex because I couldn't cope with M.E. and a child.

How do you meet other people with M.E. for support?

My DS DF has M.E. and I have seen how he has struggled over the years. It's a horrible disease and people don't know enough about how it affects people but I guess it's the same for all diseases. You don't know how it affects people until it affects you or someone you know.

Good luck OP and I think it's a great thing you're doing.

Hate the DF. Not sure my post had that much impact in reality but hopefully a few lurkers will have wayched the clips. It was amazing seeing photos of the protests across the world yesterday. Things are really changing.

Bumble I'm so sad that your child can't live with you. That must be so hard. Please be very careful with the GET. It can push people into severe relapses and has been discredited by lots of experts abroad. There are certain doctors who love to cling to it here but any hint that it's making you worse, please listen to your body.