M.E. CHRONIC FATIGUE SYNDROME PARENTS

[lonewolf]

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

I was abandoned by Ds's father when I was pg, so I've always been a single mum...Hence the nickname solo . I will be back in a while myself, Ds needs to do some online selective tests.

I left ds dad when he was 8 weeks because he was agressive and controlling. So I've been single since too. Though ds is only 4. I've been out with a couple of guys since but none have really managed to get over my illness and ds.

It sucks

My Dp met me at the end of a long time off work sick. It didn't put him off and nor did my Ds who was 6 at the time. He always says 'you don't get the cow without the calf'. True!

I don't get him though. He has another daughter who turned 31 today. She doesn't want him to have a 'lady friend' and the fact that he has another child? she's never acknowledged our Dd and never seen her. She is a selfish cow and I do think that there is a big possibility that he and I could have taken our relationship to the next level if she'd have behaved like a reasonable human being instead of a spoilt bitch.
I know I made it sound like I don't care before, but I do. I truly love my man, I just hate the refusal to commit to me in some small way, so I try to convince myself that I don't give a damn...I have been hurt so much in the last 28 years

Bet you didn't expect that!!!

Entirely plausible if he's 51 Life is weird. The unexpected always happens. LOL.

It's a shame he doesnt seem to be able to work it out though.

The guy who I was seeing that was non commital sat me down the other day. He actually spoke about his feelings he said he cares more about me than he realised! I'm not prepared to rush into anything though. I'm not sure I could pick up the pieces if/ when it falls apart.

I have a hard time trusting people. That and the ME makes it a very lonely life.

How does your ds find it with your dp living elsewhere?

So.. you're 28? ( excuse me for being dense)

My dp is Dd's dad. She's never known anything else. Ds doesn't see much of my Dp, but since there is no tie there, it doesn't really matter. Ds spends a lot of his weekends with my parents.

LOL!!! I'm 44 I'll put a picture on my profile briefly.

There's me...complete with Dd and ME

I'm having dreadful trouble with my leg muscles tonight...I'm going to have to go to bed in a mo...feel like shite.

So just 28 years of crap. Lol.

I disappeared off to bed. I'm so run down at the moment. I didn't sleep very well and I've got so much to do today.

Right, step 1 - ds to nursery.

Hope you're feeling a bit better after a rest. good morning.

Good morning to you too!
I feel really bad at the moment. I've been sending Ds to school in unironed uniform. I hate doing it, but I just can't stand to iron and I can't sit to do it either! doesn't feel right, plus I have a steam generator iron and would scald myself lol!

It was my birthday back in March and my Dp gave me two tickets to see Lord of the Rings on stage and there was never any question that we'd be going together...I've been very excited as I'd really wanted to see it. The tickets are for Friday, this week. My Dp left a voicemail last night. 'How much would I be disappointed if he dipped out of Friday...just a casual enquirey really'. Haven't spoken to him yet, but I'm stunned. He booked/bought the tickets so he knew way back at the beginning of the year when he was definitely out with me. I would lay money down that his other daughter has asked him to go out with her for her birthday. I'm so angry! who on Earth would I take with me now at such short notice? why should I want to go with anyone else? why does she have to spoil my night out?

Aww, I much prefer ds wearing ironed clothes too. My washing machine has died. Luckily he had clothes before it died. Though I feel like a state dropping him at nursery in whatever I happened to stumble across first. I've taken a load to the laundrette but it works out expensive to do.

I keep paniccing about money atm. I'm not well enough to go back to uni next year which means I'm not eligible for a student loan. I dont know what to do. At the moment, because I've been sick and ds has been at his childminders I havent had any outgoings to speak of. Now its the summer and beyond though, I'm beginning to panic.

Lord of the rings sounds fab.
I'd be honest with your dp and point out that you'd been looking forward to it for months and dont see how you could find someone to go with at short notice.

I dont know what sort of daughter wants to go out with their dad for their birthday at 31. I know I'd rather be with my friends.
Any childless friends? Perhaps your ds would like to go with you?
Is there any chance you can transfer the tickets to a different day?

Tbh, I thought of taking Ds, but I really wanted to go with Dp. I've got no single friends and almost all of them have Dc's. Dp's other d is a bit odd to say the least I think. There are issues there and I get the feeling she thinks he owes her. It's an odd family. His mother says that his d thinks he spends all his spare time with me. He doesn't. His mother is the only one who could put his d straight about a lot of things, but she chooses not to. I'm the bad guy as far as his d is concerned and I can do nothing about it. His d was dropped by a long time bf just before last Christmas. He was long suffering and finally got out poor sod, but it means that Dp is torn between her, me and our Dd at times like Christmas and New Year. I think she's jealous as she is childless and probably feels that it should be her with a baby, not her aging dad, which is fair comment to a point, but hell! she ought to stop with the attitude and accept if not embrace her fathers choices. I think she's probably also p'd off because her dad is worth quite a bit and when he dies, she'll like have to share his fortune with my Dd...that kind of hurts her I think. None of this is what I know by the way, it's just that I think very deeply about things and work things out in my head. Probably shouldn't do it really.

Coro, are you on benefits? can you have a chat with job centre plus? I found them very helpful(surprisingly)and am on benefits for the first time since leaving school. I'm not well off, but I'm ok so far. Give them a try
I did apply some years ago for DLA, but I think I wrote down my best case scenario rather that my worst and was turned down for it.

ME gives you a lot of time to think doesn't it! lol.

It sounds like she needs to grow up!

I'm not on benefits. I feel like I shouldn't need them. I'm going to make an appt to go next week hopefully. I'm not very good about seeing people, or speaking to them. It's all so draining.

I've thought about DLA but I suspect I wouldn't get it.

I've got so much to do today! I'm behind with the housework ( basics like washing up ) and I've got to get things sorted for the weekend.
My brain jsut doesn't want to process it all though. My body isnt willing. I know when I get there I can stop, but I cant get enough steam up to get going.

I know the feeling! but we can only do what we can do iyswim.
It took me 6 weeks to fill out the DLA forms and each time I wrote in it, my handwriting changed according to my energy level/how ill I felt etc...was a blow to get a 'no' after the effort of all the thinking and writing.
I hope you get sorted with some financial help. No one should need them, but I think that if you need help genuinely, then get what you need for the time you need it. Hopefully it'll only be temporary.

Well Coro, it's would appear that I was wrong about him wanting to cancel to see his other d. He wanted to help out at work!!!
Anyway, he's taking me out as planned
How are you today? I'm knackered, but I'm going to do some work here at home shortly as Dp is coming over this afternoon. Catch you soon.x

Hi Ladies, I posted this in health but I wonder if any of you could help? I know most of you are going through far worse things yourselves now but I would be grateful for anything people can share with me!

I am an ME sufferer who has spent most of the past 11 years sick but is for the most part recovered (certainly enough to have worked full time for 2 1/2 years now) but still have to take it a bit easy and watch how I live. I bascially can pretty much lead a normal life as long as I watch that I don't over do things and of course still occassionally have bad days (luckily few and far between)when my body is telling me I need to rest. I am lucky enough for my health to be good enough that most of the time its no longer an issue and it now very rarely effects my day to day life.

After much consideration my DH and I have decided to start a family and I am now 7 weeks pg. However, I have started to wonder how pregnancy and motherhood might effect my health.

Now I know part of this is because I am at the stage of pg where most people feel awful. I have been lucky so far in that I have only had to deal with a little bit of nausea and tiredness. Even though both are normal pg symptoms, the tiredness does however remind me a bit of my ME. Yes I know I had loads of other symptoms when I was ill (in fact tiredness was probably the least of my worries) and have no concerns that my health is worsening at the moment but it is the same old dragging tiredness that makes normal life seem so hard and it has made me think more about how I will cope through the rest of the pg and with a LO.

I suppose what I am after is experiences of anyone who has gone through the same thing and how they coped with pg and beyond. Has anyone gone through anything similar?

Having just read through the thread a bit more carefully I hope my post doesn't seem insensitive. My life is pretty much back on track now but I do not delude myself that it will automatically stay that way if I am not careful (this is the second time I have "recovered") so I am well aware it can and does come back. After years of living in the thick fog that is ME it is so nice to see the sunlight. I suppose I just worry that this will push me over the edge back into oblivion.

And it might do that. But! you get on with it, truly, you just get on with it. You do what you can and as you have a Dh, who presumably is sensitive to your illness, youu should do well. I have been ill since my Ds was 1 year old and I have worked full time and all as a single mum. I have been pg since then and have honestly found the stress and fatigue of a small and constantly screaming baby dreadful, she has improved a lot in the last 12 months though...
The pg wasn't so bad really and most people are at their healthiest during pg. I don't rest when Dd does and I really should
All I can say is listen to yoour body. Rest whenever you can, and sleep when your new baby does.
Good luck with it all. Keep us all posted and perhaps you can join in regularly with our thread here?
I need my bed now, I've just got in from the theatre which was fab, but I am exhausted.

Hi ladies. (was avenanap, decided I'd like a change)
You should be eligible for benefits as ME is classed as a disability (lasts more then 6 months, stops you working a 9-5 mon-fri working week). I work from home making costumes and doing clothing repairs for people, I get tax credis for this and I fit the hours around what I can manage. The tax credits ge topped up by £47 a week because of the ME. I fit a course at Uni in there somewhere aswell. I had an old house mate tha claimed Disability Living Allowance because she had ME (she seemed to be out partying every night though ), she also managed to get hold of a car under the moblity schemes.

It's the holidays. I'm ready for ds to go back to school now.

Thanks Solo. I also want to add that you should be eligible for benefits. I was on incap for 3 years and DLA (higher rate mobility) for 2 years which got me my much needed blue badge. I was pretty darn ill, couldn't walk very far at all and even had a wheelchair. I did have to have a medical assesment before the ok'd it which took a while but got there in the end.

Hello Solo

I'm glad to hear you and dp went to LORT together. How was it?

I've been stuck without my computer for over a week and it has driven me up the wall! Sorry for being out of touch. Its been one of those weeks.

Avenalife, I like the new name you sound very sussed with everything at the moment. Well done you. ( sorry, if that sounds patronising. I'm just impressed, it reassures me that things'll get there in the end)

I was away with friends this weekend and although I didnt do anything, I still wasnt well and my friend had to carry me to bed. Closely followed by me sitting in 4 layers of clothes while everyone else was in shorts! I'd managed to avoid many people seeing me like this, so such a public display was really demoralising.

Hi ladies, I've been searching everywhere for this thread and coudn't find it till now!
How are you all doing? are you all coping ok? I'm really badly atm. I went back to bed at 9am and slept until 12.40. I must try to go to bed earlier than I do...I'm still in my dressing gown.

LoTR was absolutely fantastic! We went on the Friday and the very last performance was the following day! I feel blessed to have been taken to see it before it ended.
We are off to Devon for an annual ball on Saturday. I have absolutely no idea how I'm going to manage it as I'm totally exhausted. I have to dig around my wardrobes to find something suitable that fits me too. My hands and feet are all swollen so I don't know what I'm going to put on my tooties for the do...
Dd is asleep right now and Ds is bored. What do you do though...

I'm wondering if I can extend my career break so that I don't end up being unable to do my job when I return in late January. I know that I'll not be able to cope with it and the kids with this darned disease...it makes me so angry. I'll have to write to work I think and keep my fingers crossed.

God, that post was a bit me me me wasn't it? tut! I'm sorry about that. I'm not usually a selfish person...

What have you all been up to?

Coro, I'm sorry you aren't so good. Do you get cold? is that why you had to wrap up at the weekend? I get hot rather than cold usually. How are you today? x

Playingthe9monthwait

Hi, just wanted to say I was in the same boat as you last year - back at work FT after some time off with CFS, and pg with my 1st...I felt much better as the pregnancy went on and it was reassuring to talk to other pg people on here and realise they are similarly knackered!

One thing I always find hard is distinguishing between "normal" tired and "ill" tired iyswim...now dd is 7mths and not sleeping well I am truly wiped out and worried all the time that I am back where I started BUT I know I felt better than this when she was eg 3mths and sleeping more.

I'm pretty sure however that I am NOT back where I was a few years ago, and am just mainting all the checks and balances re diet, energy usage etc as I did before. You will be fine, although you will be exhausted, and like me it might take you longer to get past the exhaustion that a newborn brings than it does for other people, but you will be fine!!

How are you all doing? I feel like poo. Dreading the drive to Devon on Saturday. I've had to turn down an invite to go the the coast with my brother and his children today. Got much to do today too, so will be getting off here today.
Hope you are all ok.x