M.E. CHRONIC FATIGUE SYNDROME PARENTS

[lonewolf]

ARE THER IN ANY PARENTS OUT THERE WITH M.E. OR FIBROMYALGIA.

Good for you! hope it all works out for you. Ds is going back to year 6 in September, but he likes me to take and collect him too...however! he'd love it if I let him go on his own.

hi im 33 and have fibro. I have a 2 yr old son.

im lucky because i have a fantastic support network. My husband does lots to help, he gets up in the morning with our DS so i cna have a lie in, and makes all our lunches before he goes to work, then he take charge of bath / bedtime to give me chance to relax.

My mum lives with us, to help me during the day and will benefit her as she gets older.

I was diagnosed 8 yrs ago, but my specialist looked through my hospital notes and told me i'd displayed symptoms since my early teens.

I suffer with stiffness and pain in my legs, back, feet, neck and shoulders, and weakness in my hands.

the knock on effect is tiredness and depression / irritability.

my mum and hubby deserve a medal lol.

Hi 1down, welcome to the thread. Glad to hear you have great support. I'm envious!

ought to change my nickname really cos since i originally joined decided to stay as a single child family.

thanks for the welcome.

i'd hire my hubby out, only i'd miss him too much.

Is that because of your ills? My Dd was a surprise to us, but I wouldn't change it. Point of fact for me is that I'm broody for another, but I won't get one

Hi Solo. yes that is because of my illnesses.

For long enough we thought we'd never have a baby, so DS is a blessing we never believed we'd have.

My hubby works full time and helps in a big way with housework, looking after DS etc to help me. Also my mum lives with us to help during the day, she's 69 this year.

We did think about having another, but it would put more pressure on all of us, and some days even with all this support i still find it a big struggle.

Ah! you've altered your name!
I went 12 years before my first pg(had fertility problems), which resulted in mc . Two years after that I fell pg with my Ds...he'll be 10 on Sunday. In 2005 I mc'd again and then had Dd in Dec '06. They were all inexpected pregnancies and I am a single mum. It was working full time in a stressful job whilst bringing up my Ds alone that started my ME. I'm on a career break atm, but I'd lay money down that I'd not have lasted very long at work with Dd being the nightmare she was(up until about a week ago).
Do you think that you'd change your mind if you were well again? I'd love another baby and I am so broody right now. Don't think it's going to happen though...

Thats a really difficult question to answer, impulsively i'd probably say yes, but its been so many years since i've been weel that i can't rememebr how it feels to not be in pain or feeling tired.

Well ladies, I'm going to join my friend and her two boys for a week away at the coast. Don't know if I'm looking forward to it or not really, but it'll be the first time that the three of us have been away and my first holiday for 3 years, Ds's first one since 2001...not to mention Dd's first ever holiday. Hope the weather improves.

Well, it was a tiring but relatively pleasant week away. The weather wasn't great, but waking up looking at the sea each morning was lovely. I now need a months holiday to get over it.
Dd had an accident whilst we were there and I need to post in the health I think to see what people think...
Hope you are all ok?

Hi all.

Life has hit the wall that it's been rocketting to for a while

thinking of you all

What's wrong coro?

Oh, I cant do anything at the moment to feel well. I struggle to do things independantly, my house looks like a bombs hit. My brain is beginning to melt, the cognitive issues with the ME are beginning to be more apparent and it scares me.

I've got myself into a muddle with finances and I cant hold on to everything I hold so dear.

My Mum and I had a huge row the other day.

I'm just so exhausted with life. There's no let up

It's just a bad spell, it will get better, honestly it will. I'll help you. I'm here if you need to talk. You're not alone.

You sound depressed coro. You need to see your GP. It's nothing to be ashamed of, it's really common with ME sufferers. He'll give you some pills. They won't change anything but they will help you find a way to cope. You really need to go, for you and Thomas. Don't worry about your mum. She'll always be your mum and she's still there, no matter how much you argue.

Don't worry about the house. Try and do one room though if you can, preferebly the living room. It will help you, you'll feel less closed in. It is horrid having a messy house and it's draining to see all the mess every day.
Right, money. Have you been claiming benefits? Income support, child tax credit, housing benefit?

I see the doc every 6 weeks

I'm doing ok, I know it will get better. I'm just so exhausted.

The arguement with my Mum was ok. She just worries about me.

I've been claiming housing benefit but nothing else because of being a student.

Thanks for the support

It's OK. Can you apply to the Uni for some money (access to learning fund). This should help you out. I'd also apply for the mobility and carers allowance so it'll pay for any transport and a cleaner. I often find that I feel alot better when I've had less sleep rather than more. If I nap in the morning then I'm drained all day. If I get up, get dressed and keep myself busy then I really do feel better (not 100% but it's a big improvement). Sometimes you can feel worse if you have too much sleep if you see what I mean.

There's a trial at Kings College hospital for ME sufferers to help find a way of managing it if you are interested. Have you tried vitamin supliments?

You can get income support over the holidays, it's not alot because the child tax credit reduces it, as does any maintenance but it can help.

I'm not going back to uni this year. I'm not well enough this last year has been awful and I'm intending to defer and try and concentrate on getting better.
The funding is messed up at the moment anyway as the LEA paid a year of fees when they shouldn't have. My uni had been fiddling the books apparently.
I should be able to transfer to a uni closer to me that is more supportive when I feel better.

I dont know where to begin with applying for things. Can I call them up and get the forms sent to me? Town is a bit far to get to right now.

Vitamins help As it's been the summer holidays I haven't had a chance to sleep. Mornings are my best time so I tend to have between 30 minsa nd an hour if I'm fading fast so I can do bedtime well for ds.

The study at Kings sounds interesting...

You can phone up disabilty direct and they will do a benefit assessment over the phone and send you the forms out.

Keep aiming at going back to Uni. Look for the light, wherever it may be. Your MP may be able to help with the Uni problem, they can be useful at times. I couldn't afford to sit the exam to get into medical school this year and I've completely lost interest in the course I am doing. I've been offered a place to study radiography, it's less hours then the nrsing course I'm supposto finish, I don't have to do as many shifts (1 week worth in the 2nd and 3rd year, that's it) and the holidays are alot longer and work around ds's holidays. I've got to sort some things out first though, it's NHS funded so I don't have to pay and I get a busary. Sounds like fun. The uni have their own xray and dummy to test on.

That Kings things is called the PACE trial, it's about cognative therapy (this would be nice! ), working with a physio for mild exercise etc. You could always give it a go. I'll try and find the link for you.

Hope you don't mind me jumping in. I have ME and FM and cried when I realised I'm not the only one struggling. Only joined today as moved to a new area 6 months ago and have not met anyone.
My DD is 2 and my DS is 15. Hubby is fantastic but is away alot and I'm finding everyday a struggle.
I'm sorry to hear that the rest of you are struggling as well...if I find the magic wand to make the pain go away I'll post it to you! LOL!
And Coro...sending you lots of gentle hugs as it sounds like you could do with them about now. x

Hi Glittermum. Welcome to mmsnet. I hope that you are well.

Hugs are well appreciated, thank you

Hello Glittermum.

My brother is coming to stay with me for a few days, for company and to get on top of the house work.

Ds first day at school went well, I'd been gearing up for it for so long.

That's really good coro. They always look so sweet and small when they start school, I felt so sad when I left ds.

Your brother sounds like a helpful soul. A house that is on the messy side seems to drain me. It's odd. I hope you get things sorted out soon.

How are you all today?

Hey everyone, how are you going?
I did a CBT course at Barts a few years back and started one at Kings about 3 years ago. I had to stop going to the Kings one though as all kinds of obstacles kept getting in the way.
These CBT things help some people, but not everyone. I think you have to be open to the fact that it may not help too. I hope it can help you though Coro if you get it going.

I've been thinking about returning to the GP for a while now, but kind of think 'what's the point'? he can't do anything for me. I hate going to the docs anyway.

I hope everyone is feeling ok today.

My house is a tip too btw.

I have a friend who's a bit of a witch (really!), she's convinced that a messy house indicates a messy mind and that a messy house can suck out energy from the people living there. I may give it a try.

I've just been accepted on a radiology course, it's not medicine yet though. At least I'll get a bursary to do it, which will help the finances. I don't think GP's can do anything, it's not something they really understand.

I believe that too actually, but I just can't seem to get on top of it.