M.E. CHRONIC FATIGUE SYNDROME PARENTS

[lonewolf]

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

Hi Solo,

I'm going through a bad patch atm too. I hate it! Usually I manage to have a little more energy and life during the better weather. My friends joke that I'm solar powered.

At the moment though I think it's all just worn me down.

How many dcs do you have?

Hello to everyone else as well. I'm really shy about posting. My brain gets muddled very easily and it embarasses me. I used to be so articulate.I find it difficult not to compare yourself to what you could achieve pre ME.

Hey Coro, could you be anaemic? I'm permanently a bit confused, feel like I've had a couple of drinks!! I've got quite bad memory issues now, seeing a neuro-someone now, I can't remember what his title is.
Becarro, my thoughts are with you, my last pregnancy was awful, felt so exhausted, ended up having an IV iron infusion in hospital. Accept all help, friends do like to help.
Its nice to talk to people who understand what exhausted really means

Hi coro and ladies.

I've not heard from you for a while coro. I'm sorry to hear that you are still having a bad patch.

I've had it for 18 months after catching glandular fever. ds is 9 so he's quite helpful and lets me sleep if I need to.

No, I'm not anaemic. I wouldnt say its like when I've had a couple of drinks, more that my brain doesn't access the right word fast enough or link things together properly.

Hi Avenanap. Yeah I'm still rough, I'm opting out of uni for now. It's too much to handle on top of everything else.
I noticed while lurking your ds is changing school. Have you moved now?

I'm sorry coro. You're so close! I've pretty much come to a halt aswell. How's the ds?

He's left the workhouse, he starts a new school in August . he can climb the trees and play in the mud. The head's going to slot some philosophy into the curriculum for him. We're still in Derby. It's not a bad place really, a train ride away from London.

Bluedomino...I am very lucky in that my parents and PIL are very good if I am ill or having a bad time.

My ds is so adorable too...he keeps asking if he can do anything for me because "you are tired because you are growing a baby mummy"

I also got ME after glandular fever - although 4 years after.

Have been feeling very low and angry with myself lately for being so rubbish and tired all the time - at least now I know its partially down to the anaemia.

Cooked lunch for 8 today so not very restful and lunch for 6 next sunday but thats my entertaining over for a few months at least!

Ds breaks up for summer hols in a week and a half and I am ashamed to say it, but I am DREADING it...what on earth am I going to do with the poor mite?

Hi becaroo and ladies.
There's probably loads of things you can do. I have a nap in the morning once ds has had his breakfast. Sometimes it's only 10 minutes, other times it's a couple of hours. I did a shocking nap before he broke up last week, I got home at 9am then slept until 2:30 . This was after going to bed at 10 and waking at 7:45.

Where about are you?

Hello again.
I have two children. My son is 10yo next month and my daughter is 18 1/2 mos. I was ok until I has Ds and being a single mum, working full time in a really highly stressed, heavy duty job...still putting 200% into everything and not resting or sleeping much, I found myself struggling mentally, physically and emotionally. I was diagnosed by my GP quite quickly and two years after that I was diagnosed again(officially)by a doctor at Barts in London. I went on a food trial(no sugars, no yeasts etc), but found it too hard to keep to because I needed to t work, care for my son and finding/preparing foods suitable was just too hard, so I stopped doing it after a short while.
I am currently on a career break after having my Dd. It's a great reason for not doing my tough job and the cost of child care is ridiculous! so I am at home. Feeling awful. But not having to get up at 04:30 for work...I'm very pleased as I'm feeling really crap. I have the pain too.
You are lucky if you have understanding friends. Most of my friends forget that I'm not the woman I once was and don't really support me. Whhen they have offered me help, I refuse because my stubborn pride wont let me take it. My house is a tip and I'm ashamed to ask anyone round, so basically I don't Funny thing is that I push away my symptoms and pain in order to help anyone else out at all...
I have a partner, but he doesn't live with us and I really don't think he understands at all. Want to write more, but I can't for now. I'm going to just check out some other messages and go to bed I think. It's been a very tough day.x

It'll be OK solo. Come back when you are feeling a bit more human.

Lol! I haven't felt human since 1999 !!!

as human as you can be i mean. I'm embarrassed of my house too. I'm sick of getting stomach ache and back ache. I'm sick of having a dodgy belly. I'm supposto go back to finish a nursing course in October

It's really crap isn't it. I found I'm better mentally since I finally accepted that I'm different to how I was 10 years ago. I stopped saying 'I used to go to the gym 3 times a week' and 'I used to do...'
Used to do's don't exist anymore for me. I think you have to accept your loss, grieve for the old you and adapt to the new you and move on a bit. It really helps.

Good night.x

I have naps too - have to really, as I dont sleep that well since I got ill due to pain/insomnia and for the last 5 years having a child who believes sleep is for the weak!!

Worst thing this pregnancy has been not being able to take my pain meds....I really rely on them some days to function.

I can empathise with what some of you are saying about not being the person you were - its hard to accept and even harder for others in my experience.....I have lost friends and jobs because of my ME but not my self respect and neither should any of you.....you all sound like amazing women doing an amazing job under very difficult circumstances

i have fibro. had it since i was a teenager.
got diagnosed 4 years ago.
now have a 8 mth old DS, it's very hard work and have to try and take it easy. having a supportive hubbie helps.

Solo, that sounds so similar to me. I'll do anything for anyone mainly as a distraction. Luckily though I have a few very good friends who are as stubborn as I am. My house is a tip too but my ds is more important. Where abouts are you Solo?

Avenanap. Ds is fine. Looking forward to going to school in September. Loves having space in the new house and both of our Asthma has been better since moving out of the damp flat.

I just cant function well atm. I know what you mean about dreading the school holidays Beccaroo, they'll adjust. I find taking ds to the park is good. He usually goes and plays in the sandpit and finds other kids to chat to while I sit and rest.

Hello MrsBick

Coro, I'm on the borders of SELondon and Kent...quite close to the Dartford crossing. What about all of you ladies, where are you(ish)? wouldn't it be great to have a support network going between us all?

A support network sounds like a fab idea. I'm in St Albans. So not far around the M25 or a train ride away.

Fab! we just need to find out if anyone else is nearish...ladies?

My Dd is not well atm. She's had a fever since yesterday lunch time and I can't get Calpol down her throat. I've even hidden it in her cows milk and her weetabix, but she's not having any of it. I'm shattered! ...oooh! it's gone quiet! ZzZzzzzz!!!

It's horrible when they are not well either isn't it.

It's when you really need an extra pair of hands and someone with a bit more energy.

I live on my own and I dread when ds is ill. I had a sickness bug the other week, and I was so relieved that my friend had come to stay for a few days because Ds woke up in the night with a nose bleed and I just couldnt help him It was completely by chance.

I hope dd is better soon.

So where is everyone else based?

Thank you! I too live on my own. Luckily(I guess), my Ds is really good with Dd, so if I'm unwell, he will often look after her for a little while - during the evenings anyway.
It's very tough this life, isn't it?

Yep, it sure is Your ds sounds like a treasure. Lots of people keep asking when I'm going to have another child! I can function just about with 1. I'm impressed you cope with 2. I dont think I could..

I've been really lucky that ds has had a fab childminder while I've been at uni. Even if I've not been well enough for uni, she'll still have ds for me. He starts school in september though and its unsettling me more than him.

Hows dd now?
Ds is very excited. We're going camping on Thursday and he's going to pack his things tonight.

Yep, it sure is Your ds sounds like a treasure. Lots of people keep asking when I'm going to have another child! I can function just about with 1. I'm impressed you cope with 2. I dont think I could..

I've been really lucky that ds has had a fab childminder while I've been at uni. Even if I've not been well enough for uni, she'll still have ds for me. He starts school in september though and its unsettling me more than him.

Hows dd now?
Ds is very excited. We're going camping on Thursday and he's going to pack his things tonight.

Dd's temp is eratic tbh. It's up high one minute and down the next. She has flushed cheeks, but I don't think it's to do with teeth. Took her to be weighed today(and thought I might be able to get her in to see the doc)she seemed quite well when we were there though bloody typical!

Regarding having two kiddies and coping - ha! I often don't. Ds can be very good, but also a nightmare! he's going through a stage right now of a very big attitude. I don't like it!
As much as I wanted several children, Dd was a big surprise to us. Dp is 51 in September and having a toddler at retirement age was not in his plan! I do wonder if he'll do what he sais he intended back in 2004 when I met him...he intended to go travelling and then live abroard. He's never wanted to live with me/us, so I think he's the eternal batchelor and will do as he pleases...I don't bother asking him. It'd just stress me out and make me feel really ill.
I think life is shit actually. When I was pg with Dd, I met two other women at the ante natal(there were only three of us), we all get on great. The other two are pg again and I know that I'll never have another and I'm sooo broody. I've never been broody before and it's killing me! I'm a sad old cow aren't I?! LOL!!!

Aww, poor dd. I hope she fights it off soon.

That's an awful position to be in, relationship wise. I have complications that are similar except he decided he was happier on his own. We were only together for a few months. It must be so hard being in that position for so long. Especially when you need practical support at home.

No, I wouldn't say that.
Just bathing Ds, back in a bit.