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i don't know any others. i have a 17mo toddler and i am finding it very hard. i have just caved into anti-depressants (last week) for the first time in my 7-8 years of illness.
MERRY: IVE BEEN THERE WITH ALL THE MEDICATION BUT CAME OFF EVERYTHING JUST NOW
EVERY DAY IS HARD FOR ME BECAUSE OF MY ILLNESS BUT THE WEE ONE DOES HELP ME A LOT TO CARRY ON. HER ROUTINE KEEPS ME IN A ROUTINE THAT HELPS A LOT. YOU JUST HAVE TO LEARN TO PRIOITIZE I SUPPOSE BUT NOT EASY. IVE BEEN ILL OVER 10 YEARS STILL HAVE PITFALLS.
Yes, i did have cfs before kid came along. actually, my pregnancy was wonderful, and i felt normal again - even afterwards for a few months. this past winter has been hard, so am trying the meds. i think i have got depressed on top of the cfs but some of the symptoms are hard to distinguish. i haven't got it that badly ie. no wheelchair/ bedridden days. occasionally i need to sleep for most of the day, but it is rare. the daily 'routine' is that we have a very lazy morning (sleep from 10-12) and get dressed after lunch! then in the pm we usually get out, even if just to the park. occasionally we make it out in the mornings on my better days, and i have to say that i prefer that, but most days i do not feel able to get washed/ dressed, and get ds dressed all before 10am. I have begun feeling like the cfs is affecting my ds, which is difficult for me. he is still too young to understand (17 mo) but i feel like he is in so much and other kids go to different toddler groups etc. everyday when for me, tesco's shopping has to be our trip 'out' on one day, and often our trip 'out' is just to run around the park up the road.
how do you deal with being a mother and feeling inadequate? How old is your lo? do you have more than one? What is your routine because i would like help/ advice with that.
well there is no one piece of advice merry- it depends on your energy . I also had me before got pregnant but had years to learn to deal with it and to date still have pitfalls. the trick is first understanding your enemy then making peace with it then learning to understand it and then finally learning to cohabitate with ilness and collaborate know how to associate with it. this is half the battle.
Its really all about pacing yourself, ps. [go get a cup of tea i may be here a while girl]you have to try and measure your energy levels first keep log of pain tirdness etc acheivements. all very time consuming you can download pre made forms from me soceity website but in long run prep work pays off. you identify your problem areas and levels of energy peaks troughs etc. then pacing is secret you set goals and stick to them do nothing more than is set out. rest is important. do not stand when you can sit dont sit when you can lie down. this refers strictly to you however with child you have additional persons needs here lies problem of having recurent flare ups. its difficult to predict stuff with kid especially at 18 months. mine is now 3 and half however i found that keeping baby in strict routine actually helped my health it helped me stick to a boring routine predictable no suprises.I slept when she slept. Also silly things like instead of running around mad all time after child change your habits eg. sit down or lie down to read books and do puzzles lie on bed propped up to play with toys together. you're really gonna need meds after this message. if you have visitors often you cant copewith make three cards red - green - yellow explain to family and friends if red card is at door or on fireplace its bad day they should leave. if yellow they can stay but not for long if green good to stay but they make their own coffee and tea, and if they feel the need to wash a couple of dishes in process all welcome.
i thimk kids understand more than we give them credit. sounds awful but almost good that you had me before baby cause now for baby this is reality to them the are accustomed to it and adjust accordingly. My wee one has now learned that when im sore i cant pick her up she comes to me and sits by me or has technique for climbing up on me be herslf so i dont strain sore arms. her routine was strict and it helped her and me also. it gave me illusion of control and helped me in my parenting skills also gave her everything she needed spot on.
she thrives . i always worry if i am doing enough but she hasnt missed out on anything. organisation is helpful also.
tesco shopping you are mad. do it online get list together and have it delivered. delivery price is less than car petrol bus or taxi and less than all stress fatigue and useless hours spent in store.
only idiots make you feel inadequate. ppl that love you and your baby will praise you for what you do given your circumstances. being parent is difficult as is - with disability think we should be proud of ourselves.
so we live in pyjams some times put jewlery and lipstick on shows them off a treat.
jokes apart girl i understand exactly what you experience its very hard to keep contol over so many uncontrolable elements.
aim is to increase good days and reduce bad days and then keep a balance. AIM IS FUNDAMENTALLY THOUGH NOT TO WORSEN BUT TO GET BETTER, THROUGH PACING EXCERSICE DIET SUPPLEMENTS MEDS IF YOU FEEL THEY WORK.
you know there is a professor in a glasgow university doing agenome progect to identify cure for M.E. seems to have some results allready they found an elevator gene in dna of sufferes. this is amazing for us cause they can then create a diagnostic test then maybe a cure.
have you tried complimentary therapies ie. reflexology, massage etc?? they helped me. esp. reflexology also colonic irrigation helped me a lot. i followed a diet for 3 years and it got me out of my bed id been in for 3 years back on my feet and able to walk and stuff. it just focused on healthy no sugars whatsoevr or refined products it was really strict and hard at first but got hang of and became second nature. my baby was so healthy when she came along think it was cause my body was healthy food wise.
you can get help if you self refer to local occupational therapist in council. you can get shower seat or bath seat- tools for kitchen to help you perch stool etc bed elaevators bars stair rails atc. you can also get practical help in getting through a pacing plan. you have to consider we are like stroke victims they have to learn how to live and do things again but in different way cause of limitations.
ps . im sore tonight hence why im up so late always in bed for 7-8 pm. i get stressed out when painful in bed so i get up and work through pain some way heat pads work hot shower or meditation.
any way starting to feel distension in muscles so gonna try sleeping again.
take care hope some of this stuff helps.
chin up girl theres a good day round corner. ps never ever feel guilty bout resting.
hi lonewolf. so much to reply to. hopefully will get a longer moment this w/e. first, where do you live? i live in east london. i've had a pretty good week this week. been out 3 days on the trot, and been like a normal person really (except not had the energy to cook, so eaten frozen rubbish). i am not a routine person so find all that v hard. how do you manage, say, if you had a night like last night where you are up because of the pain. do you stick to routine the next day? my boy is so up and down with his sleep that i feel incapable of getting up at a certain time if he has been mucking about in the night.
more questions: where do you get your food from? what sort of things do you eat/ cook?
i have been treated at barts hospital for past year and half which is good. have had physio (basically pacing stuff) and cognitive behaviour therapy. i think the anti depressants are helping my general mood even if tiredness is still very bad in the mornings particularly. luckily i don;t really have much pain, just that 'runover by a truck' feeling - mostly it is the brain fog and a general achiness.
anyway, well done for doing all that you have and let's keep up with each other here.
i just saw that this is posted in disabled parents! i have never looked in that topic. i just saw this in the current topics the first time!! guess i don't look at myself that way - don't know if that is good or bad. probably bad - not facing it and all that. can you believe i have been ill for 8 years and still not accept it?
Hi, I've had M.E for 7 years following glandular fever. DD is now 6 months old and i'm struggling to keep up with my other mum friends as don't want DD to miss out. They are wonderful and help out whenever they can so pressure is self inflicted! About to start weaning and had just about convinced myself that ready made food was ok until i read the ingredients. Not sure i have the energy to mush my own carrots on top of everything else!! What did you do about weaning?
Hi zoom. Hope you get this. Sorry, I haven't been checking this thread a lot. I managed to cook my own stuff when weaning. Just cooked in bulk and then froze. I still do that for my ds who is 18 months so he has plenty of ready cooked as we frequently eat frozen rubbish when I am not well. I bought a handblender thing - 15 quid - so you don't need to mush stuff until they are a bit older. Truth is, I did it because it was cheaper and because he would not eat the jars!
Can sympathise with not keeping up with other mums. It is great you have support from them. All my local Mum friends have 2 kids and I am too embarrassed to ask them! How did you make such good friends? Where did you meet? How do you communicate about illness.
Hi i got Fibro too.
I got 2 children a son who is 6 yrs and a daughter who is 7yrs old
I only just found out i got Fibro but have had bad back problems and was told not to have kids but me being me went and had kids the best thing i did but it was very difficult.
Had to adjust things in the house as i found it hard to lift them i used to put the changing mat,wipes,cream.etc....on the dining room table so i could change their nappies comfortably without having to go upstairs all the time it was difficult to get down on the floor.When son was born i was a single mum soi had to just get on with it and somehow we muddled through.My kids are brill they knew from a young age mummy's back doesnt work so they help a lot.
I had viral pneumonia 15years ago and it left my body in a bit of a mess. Was told by a heart specialist I would never recover full health. I didn't believe him but he was right. I has postviral fs and didn't work for a while. Kept getting worse and then diagnosed with Pernicious Anaemia Autoimmue so got injections for life. Then had a baby and things got even worse, diagnosed with 2 types of Arthritis. Arthritis meds stopped pill working so had another baby. Got 2 year old and 4 mth old. Got diagnosed with Fibro & CFS, told by another dr it didn't exist. Had to give up work. Having physio but finding it too much effort to even get there, let alone tie up laces. I feel like I am teetering on the brink & close to a breakdown most days. DP doesn't understand how ill I feel & just says "you're always ill". I feel like Drs think Im a malingerer. I feel very inadequate and generally a crap mother. I feel like life is so difficult.
oh bloody hell, i had ME when i was a teenager... can't imagine coping with it as a mother. Hats off to you for even getting out of bed, if you manage to.
zoomzoom, have a look at www.babyledweaning.com if you're not thrilled by the idea of pureeing stuff.
Hi there! yes, I have ME. I've had it for 9 years and am going through a particularly bad time atm. I'm off to bed in a minute, but will return to 'chat' with you again if I may.
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
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.
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
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.
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.
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?
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! <yawn>...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.
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!!!
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.
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.
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 <sigh>
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?
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.
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.
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...<sigh> 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.
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
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
Hi ladies, how are you today? I have a lovely form to fill in so I can get some money to pay for all of these taxi's I've been using because I'm too knackered to walk . A cleaner would be nice aswell. The form's a bit of a bugger though. I've got serious panda eyes and half brain dead today, I look like I've been boxing. We won tickets for eurostar so need to save. It's not a word we have in our house though.
I got back from Devon - it was a long drive there and a long drive back but we shared the driving which was good - such a relief! I wore an amethyst coloured, beaded Morgan ball gown as it was the only one I could get on really. My feet and ankles have been swollen up for around 5 weeks and I've still got the strap marks from the Grecian style strappy sandals I was wearing! I didn't dance at alland I always dance. Dd stayed with my parents - it was her first night away from me and she wouldn't settle. Mum said she finally brought her into her bed at midnight and the little bugger woke her up again at 6.30...she was prodding mums boobs asking for milk! That made me laugh! Well! I'm off to bed. I'll try to put a picture on my profile of us at the ball. Wont do it now though...too tired!
The dress sounds lovely. Sorry about your feet though . Sometimes it's nice to sit and watch all the drunksfallover people dance. Hope you recover well.
Thanks ladies! I didn't drink much at all that night, but still felt ropey the following morning(and still do)like a slightly queazy feeling. I have Tinnitus and was struggling to hear conversation! it's sooo frustrating! I'm sorry your babysitter let you down Coro - nice about the spa though
Can I ask you all what symptoms you get?
I get Tinnitus, numb and tingly limbs, TAtT, sore throats, headaches, extreme pain in arms, hands and legs, sensations on my face. The trouble is that you get these things(and more)so often, that you start to accept them as the norm and forget that you get them Anyone else?
Dodgy tummy (diarrhoea), really bad back pain that's where my pancreas and gall bladder are (I had to have them checked by having a scan etc. Was not very nice), mood swings, joint pain and tingly hands (I get alot of pins and needles in my feet if I've been leaning on them for a short time), headaches, a little memory loss, blurred vision, tiredness (sometimes gets so bad I hardly have the energy to move). Lovely! I try to ignore them all as possible and just get on with things. I know that the pain isn't anything serious so I ignore it and it eventually goes away. The dodgy tummy is a PITA though .
Yes, I too try to ignore it all, but I often seem to be a misery guts when it's bad...sometimes makes me feel very depressed. I get mood swings too, but I'm not sure exactly why that is. My memory is crap and sometimes I write like I am a dyslexic 5 year old(no offence intended). I also seem to have suddenly developed alcohol intolerance which I had previously seemed to have gotten away with , I don't drink loads anyway, but quite enjoy(well I did)a couple of glasses of vino. I get muscles tensing when I'm really tired too(I think I must look odd when that happens).
Did you suffer from depression when you were younger? just looking at a common profile of sufferers. I'm not sure, but I had a set of jabs for Heb B for my job and 2 years after that was when I started getting sick. That was(and is in some areas of research)thought to have been a trigger for ME and MS and has a coommon 2 year after jab link.
I had a bit of depression in my early 20s. I lost focus really and felt a bit lost. Then ds came along.
I had a 2nd hep B jab and the flu jab before I got sick aswell. That's really odd! This could be due to a vaccine then. I have wondered ho I got it. I'd not kissed anyone for a year , all I did was work and look after ds.
I was training as a paediatric nurse. I'm only a misery guts because I'm broke. I've got to fill in the mobility form. I hate doing this. I don't feel too bad sometimes. I don't like the thought of going for a medical. Do you know if everyone has to have one?
I've just applied for a part time job at my local Uni helping students with disabilities so I hope I get an interview with 2 years nursing experience.
Yes, I had depression at 15 and then was hospitalised with severe depression when I was 24. I've had depression on and off for years...They say that people who've had depression are more susceptible to ME. As far as the vaccinations are concerned, there've been many denials about a connection, but I've read up on so much that I'm convinced that there is a connection. My cousin had the vaccine for HepB for her job and was diagnosed with MS two years later. Tell me that's a coincidence too Hope you got the job. I imagine that everyone has to have the medical for the mobility. My dad applied for a blue badge(and he really does need one)and was turned down flat. I tried to get DLA, but was turned down for that too. I find it quite hard to ask for any kind of help tbh.
I've been reading some of the vaccine info. I should have been told of the risks before having the Hep injections. I may have to go and find a solicitor. Oh dear!
I get extra tax credits as a disabled parent. I Try to work from home. It's not alot though, about £40 something extra a week but it helps.
I thought about going down the solicitor route too, but tbh, I doubt we'd win. They don't seem to be able to agree(publicly anyway) and it would cost the NHS millions if everyone successfully sued. I don't think anyone is warned of possible problems due to the vaccines and even if some health officials did, you'd then most likely have a similar thing to the MMR/autism link happening...yes it is, no it isn't . The only place I'm registered as disabled is with work...I'm dreading going back
I've just phoned my union and they are refering me to my local branch so they can investigate. It's worth a try. The Uni were suposto contact me about returning to my course months ago. My tutor was going to contact the course leader and let me know. I have to have a hepatitis B booster as the three jabs I had didn't give me enough immunity though. It might make things orse. I'm not convinced I had Glandular fever, I didn't have a sore throat, just exhaustion, stomach pain and fever. The test they did was a slight positive. I need to go back to the GP as my hands keep becoming stiff when I'm writing and I'm getting pins and needles in my feet.
The tax credit office are easy to deal with. It's a condition which means you are unable to work a full working week 9-5. Workwise, they have to take your condition into account as you are covered by the disability discrimination act.
I have taken the decision not to have any more HebB boosters. It is a big chance to take in my job, but then I'm exposed to HIV, TB, HepC...the list is endless really, so what do I do for the best? I've never had the flu jab. I asked about it a few years ago and was told that I'm young and healthy enough to fight it off myself. I did inform the nurse at that point that I have ME, she spluttered a bit!
I get free legal advice and stuff with Unison. They are fab. They will even give you money for a holiday if you have not been on one for 4 years and you need a break. I get discounts and all sorts. They will sort out a solicitor if they think it's worthwhile so I won't have to pay.
. if you have visitors often you cant copewith make three cards red - green - yellow explain to family and friends if red card is at door or on fireplace its bad day they should leave. if yellow they can stay but not for long if green good to stay but they make their own coffee and tea, and if they feel the need to wash a couple of dishes in process all welcome. 
. This was after going to bed at 10 and waking at 7:45.
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. 
