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Old 03-03-2008, 01:48 PM   #1
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CFS a very lonely illness

Hi all

I have just been diagnosed with CFS, my friends "so called" dont really understand the illness and I can feel my relationship with a few of them slowly but surely drifting away.

I have days where I am ok and can get up and do bits, but they are pretty few and far between, my social life has been put on hold for almost a year now, which is extremely hard as I used to be the life and soul of the party.

I feel very lonely right now, I'm a single mum of 2 living in the UK. I would love to talk to anyone at all that can offer me advice, share problems with and understand what I'm going through. x x

 
Old 03-04-2008, 08:18 AM   #2
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Re: CFS a very lonely illness



Hi I Too Have Been Told I Have Pvfs After A Virus 2 Months Ago So Im New To This Horrible Condition I Too Have 2 Young Children I Do Have My Hubby But He Works Long Hours Away From Home Sometimes. How Did You Start With It? I Just Dont Know How To Accept My Life Like This, At Christmas I Was Running About Doing My Normal Busy Stuff And Then Got This Flu Virus As Did Other Members Of My Family They Have All Recovered Except Me. Everyone Just Keeps Saying 'youll Be Fine In A Few Weeks' But After Reading Up On Pvfs/cfs It Says Otherwise! How Do You Cope With Doing School Runs, Housework Etc???

 
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Old 03-04-2008, 01:36 PM   #3
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Re: CFS a very lonely illness

Hi

It all started about 18 months ago, i woke up one morning and my balance was off, every time i sat up or got up to do anything i felt sick, my doc said it was a virus and would go in a week or so. Sure enough i felt back to normal in about 5 days and that lasted a couple of weeks, ever since then i have had relaspses with various different symptoms, twitching eyes , memory difficulties, concentration, shaking from head to toe, fatigue, insomnia, pins and needles, numbness in fingers and toes......to name a few.

I only just manage to get up and take my son to school before crawling back into bed for the rest of the day til i have to pick him up. Some days he has to walk himself (he's 11), i have been off work for about 8 months in total which worries me greatly as i have a mortgage to pay. My housework has to get done on the days when i feel well enough to do it, but has suffered a lot.

At the moment I am unwell and am sleeping approx 16 hours a day, my children are suffering cos they dont have their mum anymore, i just wish i could get my life back, i would do anything to feel normal again.

How about you, what are your symptoms and how do you cope? Have your friends been understanding?

 
Old 03-05-2008, 12:46 AM   #4
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Re: CFS a very lonely illness

hi im quite the opposite to you im sleeping only about 4 hours a night mainly because im in pain with muscles aches and i think im so anxious about what the hells going on in inside my body, i have been being sick this last week my main problem is the tiredness and really painful muscle aches i went to watch my daughter sing in her school concert last night and all night i was in agony because i think i did too much, i also have an 18month old so i cant sleep much in the day my mum has moved in when hubby is away. I dont think they understand how i feel they just keep telling me to try and get on with things sometimes i just want someone to hug me and tell me they understand, do you have your mum to help? how old are you if you dont mind me asking?

 
Old 03-05-2008, 08:37 AM   #5
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Re: CFS a very lonely illness

hi,
I totally relate. i'm also a single mum/ME sufferer. My daughter is almost four and at that labrador age where they need to burn off enormous amounts of energy. I find it very hard to cope: I have very minimal family support, am housebound, don't drive, most of my friends just vanished as soon as they realised i might need them, battling through the courts with my ex... it's exceedingly difficult. i find my energy goes into parenting and then there's absolutely nothing left for housework, me etc.

One of my few remaining friends has decided to contact homestart on my behalf to see what they can offer in terms of help and support. don't know if they exist in your area? they help with household tasks apparently. also might be worth looking at gingerbread... never bothered with them before but they can offer help and advice.

My advice to you... and my survival method... is get someone to do your housework; responsible teenagers are a good & cheap option if you're as poor as me and they like little part-time jobs to boost their lifestyles. If they didn't refuse my dla, i would have a much tidier house but i just live with mess. it's ok. just concentrate on in-home games that don't take it out of you and use your small supply of energy to look after your kids and yourself.(putting on music and saying "dance" is a fun way of getting them to burn energy if you can bear it).

i know i need to look at relaxation in my few moments of own time, i think that more than anything is why I NEVER have good days. Other than that, do as little as possible. and don't feel guilt. i've just told myself i have to get better as it seems unfeasible to be this ill and have a child to raise. ergo, it's not forever and kids adapt so well.

on a positive note, i feel i will never deteriorate as badly as some: there's no way i can be an "unable to get out of bed" candidate. the love and powerful thought that is required when you have children relying on you is so strong that i'm convinced it will be advantageous to recovery.

I hope this helps. good luck. ix

 
Old 03-05-2008, 11:33 AM   #6
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Re: CFS a very lonely illness

Hi
ELECSKIN
I do have my mum to help every now and then but she doesnt live local to me so its difficult, i might get a visit once a month off my parents who are extremely understanding and as helpful as they possibly can be. I am pretty lucky as my kids are a lot older (15 and 11) and can fend for themselves most of the time. I am 37, although i feel about 57 at the moment.

Iz76

I will look into homestart, thanks for that, I have also been refused DLA which i find a total insult and plan to appeal when i feel up to it.
I just keep telling myself i'll do things when i feel normal again and it's just not happening.
I will fight this illness all the way, i refuse to accept that this is how it will always be, my kids will have their old mad mum back.

It is immensely helpful just having someone to share stories with, thanks to you both x x

 
Old 03-05-2008, 02:00 PM   #7
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Re: CFS a very lonely illness

Hi! I was just posting a very depressing post when yours caught my eye.
I have been sick for 2 1/2 yrs. I am now 42 with a 6 yr old and and eight yr old. Both boys.
The first six months of my illness I spent angry. Not on just what the hell is wrong with me? Why me? But most of it was on trying to convince people that I was as sick as I acted! I did lose friends. But I swear since then I have new friends. Better friends. They meet me now and this is who I am.
After the angry phase I just kept researching. I kept going back to cancer. B/c I had swollen lymph nodes leading to having one removed. It came back "worrisome" so it got sent to another lab. Even the ENT who did the surgery thought it was malignant. But thank God it was reactive. But with the other nodes, low grade fevers, night sweats and allover pain ect ect I always had that seed planted about lymphoma and a bone marrow biopsy ect.
I am so glad this isn't life threatening. But I am so sick. I wish everone understood but they don't. By now I quit trying to prove my illness. If outside family sees me on a good day great. If I am limping or off balance then they do see a tiny window of it.
I know what your going through. I wish I had the six months back that I wasted being angry and feeling like I had to prove it to the non believers. To hell with everyone else. You know your body. You are sick! Maybe going through that is part of the process of getting a chronic illness.
Today I sit here pretty sick. Not as bad as yesterday. Enough to start looking things up again.
I will never accept that I only have CFIDS. It is just so foreign. SO obscure. Some days the pain seems to much to be CFIDS.
I wish you the best. I can say that this is a journey. There will be good days I promise. Just as much as there will be days when you lay there wondering why you are in bed when the rest of the world keeps going on without you. But in the end pain and all it is a learning process. I tell my kids to watch and learn. See how Mommy doesn't feel good but I keep doing what I have to. I have only missed 2 practices over the 2 1/2 yrs. Also they have learned to take dissappointment in stride. If we have to cancel going to the mountains b/c I am too dizzy ect. Oh well! Maybe next time.
I am sorry about rambling. I am just having a bad flare and you caught my eye and my heart.
Pls hang in there. All we have is hope and prayer. ANd taking each day one at a time.

Best wishes,
Deena

 
Old 03-06-2008, 01:18 AM   #8
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Re: CFS a very lonely illness

hi all, could anyone give me some advice about how to deal with this pvfs, as ive only had it for two months my doctor has just told me to have complete rest and it will go in a few weeks/months, but a different doctor told me to carry on as normal doing as much as my body feels comfortable with. The thing is i feel as if im going downhill i dont want to do anything incase i make myself worse im not sleeping more than 4 hours a night because i just cant get it all out of my mind does anyone have any suggestions for sleeping?

 
Old 03-06-2008, 02:18 AM   #9
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Re: CFS a very lonely illness

Deena

How sweet your message is, thank you for your empathy and understanding it means such a great deal. To see it from someone else's perspective and your (and indeed all the other posters) positive words is such a massive help to me.

I know exactly what you mean when you say it cant just be CFS, but its such a misunderstood illness even by the experts, not knowing how to treat it doesnt help either.

I am going to take on board your words and stop trying to prove myself to people, after all if they have an issue with it they are not true friends and I dont need them in my life.

I wish you and all the rest of us misunderstood sufferers all the luck in the world x

 
Old 03-06-2008, 08:30 AM   #10
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Re: CFS a very lonely illness

Quote:
Originally Posted by ELECSKIN View Post
hi all, could anyone give me some advice about how to deal with this pvfs, as ive only had it for two months my doctor has just told me to have complete rest and it will go in a few weeks/months, but a different doctor told me to carry on as normal doing as much as my body feels comfortable with. The thing is i feel as if im going downhill i dont want to do anything incase i make myself worse im not sleeping more than 4 hours a night because i just cant get it all out of my mind does anyone have any suggestions for sleeping?
I think you have to decide for yourself. I carried on "working" for 4 months as a waitress, but i was rather foolish in retrospect as slept/rested all day just so i could do a job badly and was a pretty useless parent as a consequence. but i think 2 things: you have to learn and constantly reassess your capabilities. don't keep going beyond the point where you suffer the consequences, this is a bad idea, but i do think you should do as much as you can while you can. i think it's a bit like giving up if you just rest all the time. though later you may find it beneficial to rest when you feel a bit better as it gives an extra boost and a sense of wellness despite the pain & fatigue.

The second thing is quality of rest. don't know if you've done relaxation techniques in the past, but you can probably get support from your gp and this actually does make a difference, even if you just manage a minute or so. and it might assist your sleep without the need for pills.

a very recovered friend of mine (run marathons since etc) gave me the best advice: to concentrate on looking after myself and getting well. Hope this helps i x

 
Old 03-07-2008, 03:30 AM   #11
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Re: CFS a very lonely illness

Quote:
Originally Posted by iz76 View Post
I think you have to decide for yourself. I carried on "working" for 4 months as a waitress, but i was rather foolish in retrospect as slept/rested all day just so i could do a job badly and was a pretty useless parent as a consequence. but i think 2 things: you have to learn and constantly reassess your capabilities. don't keep going beyond the point where you suffer the consequences, this is a bad idea, but i do think you should do as much as you can while you can. i think it's a bit like giving up if you just rest all the time. though later you may find it beneficial to rest when you feel a bit better as it gives an extra boost and a sense of wellness despite the pain & fatigue.

The second thing is quality of rest. don't know if you've done relaxation techniques in the past, but you can probably get support from your gp and this actually does make a difference, even if you just manage a minute or so. and it might assist your sleep without the need for pills.

a very recovered friend of mine (run marathons since etc) gave me the best advice: to concentrate on looking after myself and getting well. Hope this helps i x
iz76 thanks for your advice, its so hard knowing what is the right thing to do i guess only with time you find out who this new you is and what you are capable of i just cant say goodbye to old me i just hope and pray that this last weeks or months and not longer. ive been using crystal healing which my sister does to help me relax but i still cant stay asleep its the lack of sleep thats getting me at the moment

Last edited by ELECSKIN; 03-07-2008 at 03:36 AM.

 
Old 03-07-2008, 05:46 PM   #12
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Re: CFS a very lonely illness

ELECSKIN

I hope and pray your old you comes back soon, god bless you x x

 
Old 03-08-2008, 12:42 AM   #13
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Re: CFS a very lonely illness

Quote:
Originally Posted by unsteadyeddi View Post
ELECSKIN

I hope and pray your old you comes back soon, god bless you x x
unsteadyeddi thanks for your kind words hope you have a good day!

 
Old 03-24-2008, 11:29 AM   #14
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Re: CFS a very lonely illness

Hi Eddi and everybody! I feel your pain. I am fairly recently diagnosed (less than 2 months) and don't really have anybody to talk to.

My husband has been great, but he has 2 jobs and I honestly hate to bother him with blathering on about how I feel. Plus, well, he's a man and you know how that goes - they hear every third word but don't know how to really LISTEN.

I don't really have any friends anymore and spend 99% of my time in my house. I love it here, don't get me wrong, and I'm not terribly social anymore but I wish I had people to just talk with about it, or about anything...just knowing that they understand how I feel because they feel the same way.

 
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