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M.E. CHRONIC FATIGUE SYNDROME PARENTS

(180 Posts)
lonewolf Fri 20-Apr-07 18:16:49

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

MerryMarigold Fri 20-Apr-07 18:17:17

i'm so glad to see you. Yes, me!

MerryMarigold Fri 20-Apr-07 18:18:15

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.

MerryMarigold Fri 20-Apr-07 18:18:47

btw, i have cfs not fibrolmyalgia

lonewolf Fri 20-Apr-07 18:33:35

FANTASTIC FINALLY FOUND OTHERS FROM MY PLANET[SMILE]

lonewolf Fri 20-Apr-07 18:34:23

DID YOU ALL HAVE CFS OR FIBRO BEFORE HAVING CHILD?

lonewolf Fri 20-Apr-07 18:38:00

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.

lonewolf Fri 20-Apr-07 18:39:27

ARE YOU REGISTERED DISABLED CAUSE YOU CAN ALSO GET HELP FROM OCUPATIONAL THERAPISTS STUFF FOR THE HOUSE ETC!

MerryMarigold Fri 20-Apr-07 18:51:42

i have to go now, but i will reply later

lonewolf Fri 20-Apr-07 21:10:11

hope i catch you again nother day. take care.

MerryMarigold Fri 20-Apr-07 21:35:23

Hi lonewolf

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.

hope to catch up soon.

lonewolf Wed 25-Apr-07 01:35:23

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.

lonewolf Wed 25-Apr-07 01:42:51

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.

lonewolf Wed 25-Apr-07 01:50:03

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.

lonewolf Wed 25-Apr-07 01:55:49

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.

lonewolf Wed 25-Apr-07 01:59:13

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.

talk soon

MerryMarigold Fri 27-Apr-07 16:32:09

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.

MerryMarigold Fri 27-Apr-07 16:35:32

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?

zoomzoomzoom Thu 17-May-07 23:50:24

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?

MerryMarigold Wed 13-Jun-07 05:32:31

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.

notnuftime Thu 14-Jun-07 11:48:49

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.

Coro Thu 26-Jun-08 21:54:31

I have ME too!
I've got a Ds who is 4.

I've had ME for 8 years now. It's nice to find other Mums who know what its like.

bluedomino Sat 12-Jul-08 23:38:22

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.

ExterminAitch Sat 12-Jul-08 23:42:15

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. smile

zoomzoom, have a look at www.babyledweaning.com if you're not thrilled by the idea of pureeing stuff.

good luck, ladies, well done for keeping going.

solo Sat 12-Jul-08 23:47:13

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.

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