Coping with chronic fatigue

c4thyg

Hi everyone.

As with many of you, I have to cope with the chronic fatigue part that goes with autoimmune conditions and I wondered how you guys coped with it. Do you have any suggestions?

The hard thing I find is that I rarely have any time to slow down as I'm a lone parent of a 3 year old. No matter how tired or ill I feel I simply have to keep going and no 3 year old can understand why mummy doesn't want to play. I've been feeling really guilty this week about not spending enough time with Meg. I know I have to shake that off but how do you guys deal with it?

I have got her in preschool for 2.5 hours each day now which I'm hoping will help. However, I'm finding that I'm trying to catch up on everything else that needs doing instead of taking it easy.

If anyone finds a magic pill to alleviate chronic fatigue plz let me know.

tarasmygirl

Hi

Is there another parent who could collect Meg from preschool to play with their child for a couple of hours - it would give you a longer period to rest, then any days you feel able you could return the compliment.
I found this worked when my daughter was Megs age ( she's29 now ) and by taking turns all the mums in our group got some time to themselves even if it was only 1-2 times a month. I didn't have RA then I have only developed this disease a few months ago.
Three year olds can be a lot smarter than you think. How about making sure there is a drink out for her and having her play in living room or watch a dvd while you sleep on the couch. If you tell her you will play with her after a sleep and possibly set an alarm to show the start of 'Meg's time ' it will help her to feel more independant .
Take care
Cath

frogmorton

Hi cathy

very good to see you

I was going to suggest nursery - I will suggest though that AT LEAST one session you rest - properly feet up and book and cuppa or duvet on settee and alarm clock.

I can promise at least that she will grow up and soon be at school way more than you are getting now. Life will be ok - that alarm clock is essential though so you dont oversleep.

Oh just incase it's relevant - are you sleeping at night ok? If not maybe the doc can give yo something?

Love

Toni xx

c4thyg

Thankfully, I can afford to keep Meg in a full day twice a week and my parents are there for emergencies. I'm not really up to looking after other kids, even on the better days as it just lays me up the next day. I did try it with a friend a few months back. It did however show me that Meg does realise that I simply don't do certain things.

Hi Toni,
Now you mention it, no I'm not sleeping well at night. I had to take sedatives last night. Again, it's difficult as Meg is still having a lot of nightmares since her dad left so I'm afraid to take sedatives too often in case I don't wake to her.

Even though I know I get tired, it's the fatigue that bothers me. When it's fatigue it doesn't matter how well I sleep, I still struggle. I know it's triggered by viral infections mostly, but I must either have other triggers as well or fatigue is simply part of autoimmune problems.

It's a real shame that Meg didn't start school this year. She's so ready for it and longs to be with other kids. Unfortunately, her 4th birthday is in Oct so she just missed it. I'm pretty much resigned to muddling through another year. Shame there isn't a supplement that could help in the meantime.

frogmorton

Yep that would be nice!!

a sort of Tonic like they used to have that pepped you up

You dont get the nursey free when she's acertain age do you??

Good job you got parental support.

LOve

Toni xx

skezier

Hi Cathy,

Oh the fatigue.... problem isn't it? I can't think of anything other than what the others have suggested but do know how hard it is to cope with it. I sort of plod round full of concrete half the time and fall asleep at the drop of a hat in the arm chair as well.... Lets hope we can find a tonic eh?

The little on didn't miss out by much did she? Cathy you hang i there and rest when you can till it passes. I hope it does soon. Cris x

dreamdaisy

I have nothing really practical to offer except cut back on the really inessential things of life such as housework - floors do not have to be spotless, or ironing everything within reach - I last ironed a pillowcase in 2001, or anything else you can think of. Three year olds, although sweet (sometimes) are hard work and do not comprehend some of the weightier matters of life - save your energies for her and teach her quiet games such as Statues! DD

dippydoodah

I hate the fatigue, I can sleep through the night and still find myself dropping during the day and not just for 10-mins/ half hour, I can be out for 3 or 4 hours if I was left too it :shock: Even then I wake up feeling sluggish and heavy.

I understand about running around after a little one, I have 3 little boys myself and it's hard when you know you can't just rest when you want to. Its great that you have your parents for support.

Im also beginning to learn not to do too much during the day or I feel it worse the next day. If my house is a little dusty and it offends, people can happily leave...

I would use some of the time that you are alone for resting though and like someone else has said, keep an alarm clock close by ~ I always set mine for half hour before Im due to go out so I can wake up a bit!

Hope you get that tonic to give you a bit of oomf! x

snowball

Hi Cathy, I do feel for you mine has just kicked in again its like been hit by a brick wall and no matter how much sleep you get its still there. Just rest when you can, I'm a single mum but my boys are grown up. Could you get your mum to do some house work and take your daughter for a few hours. I was given a leaflet about fatigue, I will dig it out and see if there is anything useful on it.

Jules x

snowball

Hi Cath it doesn't say much, just rest as much as you can, and I know it aint easy with a 3 year old. Sending you a ((((hug))))

Jules x

tinkerbell3

Not sure if it works for everyone but i found that a light alarm clock really helped both to go to sleep and for waking up gently. It sounds silly but I have had problems sleeping since I was a child and with RA and the chronic fatigue that went with it I woke up dead tired and it never improved all day. Now however the light comes on over 30 mins and it brings you to gently so I feel more refreshed when I wake. It also gradually goes dark at night so it simulates sunrise and sunset. It can't do anything about fatigue during the day but at least I can start the day with a little enegy.

I also found that reflexology helped. I don't really believe in mumbo jumbo cures but I found that it helped me relax and feel better in myself which helped me to cope a little better with the things I could do nothing about.

Tink

angie1973

My fatigue can be awful too. I tend to get very little sleep at night which doesn't help at all, and that accumulates over the weeks until I will have one night where not only do I sleep through, I don't wake up to anything at all, because I'm just so completely run down.

I do find reading before bed helps tire me out a bit, and I think if Meg is in nursery you should say stuff the housework for a day and pamper yourself or have a warm bath or relax, something other than worrying about getting things done.

And take advantage of your parents once a month to have her for a whole day or something, at the weekend even. My mum lives too far away to help me, but my in laws live round the corner and are useless. They just never help which is frustrating as it would do the world of good to me and hubby.

Hope it eases off, it's no fun is it!
Ange..xx

pols090607

Hi,

I feel exactly the same - today I feel as though I can't keep my eyes open and my body feels like lead weight ! I feel exhausted.

My children are 6 and 2. My 6 yr old is full time which is great but I have my 2 year old at home alongside juggling a part time job !

Thankfully my husband is great but I think it just goes with the illness sadly.

I have started to eat liver (eughh) and have a 60g bowl of sultana bran daily which contains about 8mg of iron.

Let me know if anyone finds a miracle :shock:

speedalong

Hi,

I would say only do essential jobs ... learn to leave some so that you have more time to rest. Invest in toys/put them on the presie ideas list for relatives etc that will wear your little'un out and not you - a little trampoline etc - you sit down and count etc as she jumps ... I do know how together time can be a struggle when you just want to collapse in a zombie state - but try and compile a list of shared activities that are relaxing to do together .. games/playdough/sharing books etc Wackyware house type places are a great place for little ones to let of steam and the adult can encourage from the sidelines. Try and team up with another Mum - you can watch the bags - and she can sort out any problems and the children can wear each other out ...

SPeedy

c4thyg

Wow, it seems that fatigue is simply part of autoimmune judging from the number of replies. Thanks guys. Even though there is no simple fix at least I know it's not me being a wimp!

I had a bit of a scare yesterday so my parents took Meg overnight and still have her. They've had a tough time though as she screamed all night and mum doesn't want to have her again. My dad however has taken her out for the day despite being up all night. My dad's great. It's a shame that they're not in better health themselves though. We just seem to muddle through.

I'm waiting for blood tests from the hospital now. At least I didn't get phoned last night telling me that I had to go in. That's something at least. Arthur isn't my biggest problem. My immune system destroys my blood as well so I can easily bleed which is what happened yesterday. All because I got run down! Most people simply wouldn't believe it. I have slept for about 14 hours in the last 24 and I would still like to sleep. There isn't enough coffee in this world!

I am determined though that I am going on holiday on Monday. Nothing short of a major bleed is going to stop me. I'm going with Meg and my new fella. I can't wait for all that sunshine and ice cream on tap! So the only urgent thing that I'm intending to deal with is packing my suitcases!

If I find a cure for fatigue I'll be sure to let you know.

marion1952

Hi Cathy

Just want to say I do hope things settle down for you and that you and Meg and the new man get away on Monday and have a fab holiday..

Marion

page35

Hi Cathy
Good to see you and you got a new fella good for you
i totally sympathise with the tired and having a 3yr old but dont have any extra advise other than what has already been said.
Have a lovely holiday, where you off to?
best wishes Sharon

dreamdaisy

I remember you shyly posting about a new man a few months ago - oooh! A romance - how absolutely lovely. If he's sticking with you thro all this then that's a good sign! Have a lovely break. DD