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house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 1/11/2006 12:58 AM (GMT -6)   
Hi, I'm house mouse, and I'm new to this forum. Have had CFIDS for 12 years and spent about 9 of those in bed. My daughter is 17, 18 in 2 months and she has had CFIDS for 4 years. My 18 year old son had it when he was about 11 but we recognised his symptoms early, and I gave him some of the same tablet that was helping me at the time.

It just lifted him out of it and he slowly kept getting better over the next few years. We were careful not to over exert him and when he was ready to play sport again we got him into baseball as it provided exercise in a way he could handle. He started playing football and climbing cliffs when he knew he was ready to!

The hardest part was getting my Dr to test him for CFS. We had to see a psychologist because he was only going to school one or two days a week. The psyc. said he was one of the most positive kids he had met. What did I think was the problem? I said I thought my son was sick and the psyc. agreed with me. Finally took him to a Dr that knew about CFS and she did a blood test, said he hadn't gone fully into CFS but was sliding into it. Really think the thing that helped was we were aware of it and had something that was helpful to give him at the time.

The hardest part was convincing everyone that I wasn't just seeing CFS everywhere. Now my daughter has got it there has been so much talk about her empathising with me. She has a twin sister who is fine and 2 older brothers who are fine. People can really make a difficult time more difficult by assuming a lot that isn't true. For us the hardest part has been the isolation and the comments of family and friends who assume we just need to get on with it and have said such unkind words. A 24 hour dose of this would probably cure that but you all know like me, we wouldn't wish this on our worst enemy.

I've found a few others around who have CFS and so we keep in touch and pray each morning for each other. Share anything positive and encouraging, but also have a rule that if you are having a bad day that is the day to make a quick call and tell someone. Sometimes someone reminding you that these feelings don't last, that you've felt this way before and tomorrow you will feel a bit better really helps. At my worst I would give the family a little thing I'd written that had anything positive in it I could think of. They weren't allowed to tell me anything negative only what was in the book. Things like, last Wednesday I could sit up in bed for 2 mins and that was a first. The nausea is lessening, the dips aren't so deep now, anything that kept me looking forward.

When it comes to medication I try everything in a pinch amount because I've had a lot of reactions and that seems a safe way to do it as I can always increase it if it is okay.
As a mum it has been hard to look after the kids and spend time doing things with them (especially when I have a few) –but they say at least they always know where I am! So whatever way you look at it there can be some good things.

I feel I’ve lost big chunks out of my life from this and still struggle with the attitude of people towards this illness. So many think they are experts, but when ask if they have you ever read anything on CFS or gone on the internet to find anything out about it, the answer has always been ‘no’.

On my 40th birthday after I had been really sick (medication had scarred my kidneys, shrunk one a third and put me on a trip for 2 days) an Aunt and cousin came over to bring me a birthday present. When they came into the room they were so angry they wouldn't look at me for 5 mins, they looked out the window. Then they said "You could at least have put some lipstick on and brightened yourself up." Then they cornered my husband and asked him if he was going to tell me or should they that it was time I got out of bed and got on with life!

That has been the typical attitude of most of my family, except for my kids. Funny when I was the sort of person who always had 10 things on the go at once, loved walking, gardening, painting and life in general and never really sat still.

The upside is that I have some amazing friends. At one stage my husband was being advised by family to put me in a rest home. One friend who heard this rang and said she would take me to her house to be looked after rather than see that happen. Another said that if I were sent to the rest home he would ring my daughter each night to make sure she had taken her medication etc. as she was only about 13 then and really no one else would have been there to keep an eye on that.

So for those that think CFS is all in the head and we have opted out of life I suggest they try a week in bed, depending on others for their basic needs. The novelty wears off. Every one of you with CFS, etc and those who live with and look after those with this illness deserve a medal for not giving up and for getting through each day. You are amazing!

Regular Member

Date Joined Oct 2005
Total Posts : 28
   Posted 1/11/2006 4:20 AM (GMT -6)   
Yup, the disease is terrible and it is aggravated by lack of understanding.
I used to be a workaholic.  Once I worked by day and went to law school at night and had energy for a social live.  But that was decades ago.  Spent the last 20 years working part-time. 
Comments I've heard too many times:
From co workers:  I wish I could go home early.
And from others:  What is it you have again?
Aren't you over that by now?
If you'd just exercise a little.
My sister sells ___________.  I bet it would fix you right up.

house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 1/11/2006 8:48 PM (GMT -6)   
Hi Rock, thanks for replying. Sorry it sounds like you have had CFS for along time.
Looks as if the responses to it are fairly standard. It was great to come across this forum and read what others were writing. I heard that they have recently discovered consistent differences in the Genes of those with it which may lead to a blood test to diagnose it and then wouldn't it be great if they could get a one shot cure all pill or something.Costs nothing to dream!

New Member

Date Joined Jan 2006
Total Posts : 7
   Posted 1/11/2006 9:52 PM (GMT -6)   
I'm new to this forum as well. I've had CFS and Fibro for over 20 years. I assume most of you are familiar with www.cfids.org . There's lots of info over there. Plus there's access for any of your healthcare providers to take a course in CFS at www.cfids.org/treatcfs .
I didn't know this website existed until a friend looking for Lyme info told me about it.

obs ann
Veteran Member

Date Joined Jan 2006
Total Posts : 679
   Posted 1/11/2006 11:40 PM (GMT -6)   
Hi House Mouse, Rock and grannycfs,

Welcome to the three of us that are new here. :)

I hope you and grannycfs and me will find a neat avenue of 'relating' and other positives as we go along with these medical issues. I just found this site doing a search for Forums of this type, and this one seemed like the best. I got hit over 3 1/2 years ago, with half of what's on the Index page ... ha. So this Forum covers an awful lot. Thanks to whoever put this together !!!

You said something very profound House Mouse, that I believe has been the thing that has actually kept me sane or even alive these past years since I became 'suddenly' disabled, like many here have ....

Quote: ""I've found a few others around who have CFS and so we keep in touch and pray each morning for each other. Share anything positive and encouraging, but also have a rule that if you are having a bad day that is the day to make a quick call and tell someone. Sometimes someone reminding you that these feelings don't last, that you've felt this way before and tomorrow you will feel a bit better really helps.""

So true House Mouse ~ So true.

Thank you for your post and better days ahead for ya.

And God Bless grannycfs !


house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 1/12/2006 12:18 AM (GMT -6)   
Hi Grannycfs and Ann, isn't it neat to be able to talk to people who you don't have to explain everything to. We all know that the way we feel is real.

Thanks for the encouragement. It is good to have found this forum and thank you for the web links Granny. Will take a look. Today I passed the forum details along to the others in my support group, so hope they come on board too.

Some of them I've never met, we only talk on the phone or email.

We promise ourselves that one day we will all get together and have an outing somewhere.

The best thing is that 2 of them have managed major achievements this past year. One went to China and climbed the wall (all those steps!) and another walked the Milford track here in NZ.

Must admit I had my heart in my mouth until they came home. But they did it.

One of them has managed to slowly get back to 2 days teaching a week. She's really tired but the school have been great to her and she is making progress.

I've been able to get out of bed for longer periods this last 6 months and although I use a wheelchair to get around can walk about 60 steps now, (and breathe) which I couldn't do before.

Harvested some veges I planted too. I bless the person who discovered weeding using the newspaper and grass clipping method. No digging!

Would be interested in knowing what a typical day is like for others ?

Take care and remember you are special!

Veteran Member

Date Joined Jul 2004
Total Posts : 674
   Posted 1/12/2006 6:10 AM (GMT -6)   
Welcome to you all that I haven't already welcomed :)
I am happy that you all are finding the support you need here. You will find you are amongst caring individuals that will always lend an ear.
Hope to see you all in chat someday
Co-Moderator for Fibro
Moderator for CFS
Please make HW donations @: http://www.healingwell.com/donate

New Member

Date Joined Jan 2006
Total Posts : 7
   Posted 1/12/2006 4:47 PM (GMT -6)   
Hi everyone,

Just a quick note to say I think this forum sounds like a very positive place to visit and share. I had kind of gotten away from forums and have been busy with other things. I am very high functioning although I do have CFS and FMS but have improved. I'll explain more another day. My cousin and I went shopping today. We are Red Hatters. I took my "Red" walker with a basket and we had a ball all day going thru clearing racks and going to stores that were sellilng out, etc.. We stopped whenever we got tired. But we found lots of bargains and some red and purple things as well.

Hope everyone is having as good a day as possible.

Love to you all, Granny

house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 1/12/2006 6:24 PM (GMT -6)   
Hi Granny, Mel and all.
Have to ask what a "Red Hatter" is? Sounds as if you had a great day. Nothing like a bargin to lift your spirit. There's something about retail therapy that you just can't dispute! I've got a son living in Melbourne, Australia and I took my youngest twin, Sophie, with me for a visit some years ago. (I was in a patch where I could do a bit more) I used to live in melbourne and love Myers. It is a big store, anyway I was still buzzing with all the things to see and ready for another floor, and my young daughter was saying, "Please can we just rest for a while."

When I ever go out I usually make it over a few hours and then the fall out is a bit more worthwhile.

Do any of you like writing at all. Poetry, short stories etc?
I wrote a poem that the local Christian radio Station read out. They have a poets corner. It goes like this:

Bigger Than My Room (c)

What will we do today, Lord,
In this little room?
Will You meet me here today Lord,
Your presence in full bloom?

Will You sit a while with me, Lord,
And just enjoy the peace?
Will I feel Your smile in small ways
Or Your perfumed joy released?

Will You take me beyond the doors, Lord,
Will we watch the changing sky?
The hawk who circles slowly,
Or the fantail dancing by?

Will You point out some new sight, Lord,
In that ever changing view?
Leaves that turn to gold and red, Lord,
A spider web bejewelled with dew?

An invalid is what they called me, Lord?
In Valid? How could that be?
When the majestic King of the universe
Comes and shares the days with me.

I wonder if they saw the sunset, Lord,
You painted for me last night,
And how the gold flowed through my window
And I glowed in that warm light.

Will we dance as one today, Lord?
Will You whisper secrets new?
Although I'm stuck in bed, Lord,
There's really nothing I can't do.

Has it really been four years, Lord?
Well how the time has flown.
It seems we've just grown closer
In this time we've spent alone.

Do you remember the promise You made, Lord?
Yes, of course You do.
One day I'll walk on these two feet
They've still got work to do.

I think I'll always be amazed, Lord,
At the generosity of your Grace.
How you've filled my heart with joy, Lord,
And brought beauty to this place.

Have a number of little stories that I''m trying to put together. Just stories to encourage people in our position to "Hold On"

Love drawing flowers and birds etc so have done a few of those and am working to put them together with the stories.

It's taking a bit of time, but it is great for keeping my head above all this.

My room looks down over the valley and I always think if I had to get stuck anywhere, I couldn't have been put in a lovelier place.

It's a bit off the beaten track though, so not too many visitors.

Look forward to hearing from you. Have a special day.

House mouse

New Member

Date Joined Jan 2006
Total Posts : 7
   Posted 1/12/2006 6:38 PM (GMT -6)   
Mouse... what a lovely poem. You have quite the talent there. I look forward to reading more of your poems.

You asked about Red Hatters. We are members of the Red Hat Society, which means we are women over 50. We get together once a month for some joint activity. We get all dressed up in purple outfits and Red Hats. A person under 50 can join but they must wear a pink hat. We wear glitzy things when we go out many times like we did yesterday. We went to a brand new mall nearby - very upscale - and had lunch together and shopped.

Our outfits reflect our personality. We can wear red boas or red scarfs with our purple suits or dresses and red gloves if we wish as well as official Red Hat jewelry or whatever. We carry red purses or tote bags and wear red shoes. Our group is 10 Sassie Lassies and we make quite a statement when we show up all together somewhere. We alway draw many smiles from onlookers. And so many women want to join us. It brings out the little girl in everyone who once loved "dressing up."

My jewelry-making friend made me some glitzy Red Hat jewelry. She started out to make blue jewelry to raise money for Chronic Fatigue Syndrome and then branched out making other pieces so that now every month she has a special such as her "Garnets Are Not Just for January" pieces. And now she's make a whole raft of purple and amethyst pieces for February and for May 12 Awareness for Fibromyalgia. She gives some of the profits to research funds.

I just joined in December and my cousin joined in November. The group itself formed about a year ago. There are hundreds and hundreds of these chapters. Each chapter leader is called the Queen Mum. They are all over the country and have gone international as well. There will be a big national convention this summer and I forget right this minute where. There's an Alaskan cruise scheduled as well as a trip to Niagara Falls.

We just wanna have fun!


house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 1/12/2006 7:24 PM (GMT -6)   
Hi Granny,
Guess what! I just turned 50 last July and I love anything that sparkles. What a fun thing to do. Perhaps I'll wear a red beany and red sparkly necklace. My kids have seen me do stranger things to beat the boredom. They'd be delighted to know it's not just their mum that does these things. Perhaps when the ones I've been promising to get together with when i get well can all come with their own fun item too. Sounds like something to look forward to. It sounds as if your friend has found a great way to make funds for cfs and have a good time doing it. I haven't heard of Red Hatters here in NZ but that doesn't mean there aren't any.
We had a lovely young girl from Michigan helping us out in the house who we keep in contact with. I'll ask her if she knows of Red Hatters.
Have fun
H Mouse

New Member

Date Joined Jan 2006
Total Posts : 7
   Posted 1/12/2006 7:29 PM (GMT -6)   
Hi Mouse,

I'll check the directory and see if there are any chapters in NZ. The website is www.RedHatSociety.com .


New Member

Date Joined Jan 2006
Total Posts : 7
   Posted 1/12/2006 7:34 PM (GMT -6)   
NZ has chapters in these towns:  Amberley,  Auckland, Blenheim, Christchurch, Coromandel Town, Dunedin, Hamilton, Kerikeri, Napier, Nelson. If you go to www.RedHatSociety.com and click on "Chapters" you'll see the list and click on the nearest city to you and find out whether the chapter is open and who to contact.

house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 1/12/2006 7:44 PM (GMT -6)   
Thanks granny
I live near Auckland so will check the website.
I told my daughter and she thinks it is fun.

I see it is 5.34 pm there. Here it is 1.40pm
Have a good evening.

New Member

Date Joined Jan 2006
Total Posts : 7
   Posted 1/12/2006 7:56 PM (GMT -6)   
You're welcome.... have fun!!!


obs ann
Veteran Member

Date Joined Jan 2006
Total Posts : 679
   Posted 1/12/2006 9:36 PM (GMT -6)   
Dear House Mouse and g.

Oh Mouse, that Poem. First came the goose bumps, then tears. Wow ! I related to it so very much, being about 90 percent bedbound/homebound and all the conversations we have with Him.

Thank you so much for sharing that. I'm going to have it printed and hang it on my wall. God Bless you !

And enjoyed hearing more about the Red Hatters and the fun of it. I'll be praying that one day the Mouse can get glitzed with y'all out there Auckland.

Happy/Blessed days to ya's.

house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 1/12/2006 11:32 PM (GMT -6)   
HI Ann and all,
thanks heaps Ann, I'm glad you liked the poem. It is amazing that even though this isn't where we want to be, that there are some really special moments in some of the tough things we go through. It is hard to explain to people how much pleasure there is in the little things.

One night my daughter and I lay on my bed and watched the sunset and then the first star come out. I've never done that before and it was really beautiful.

Here's a poem that I found in a book called "Streams in the Desert"

A Persian fable says: One day
A wanderer found a lump of clay
So redolent of sweet perfume
Its odours scented all the room
“What are thou?” was his quick demand
“Art thou some gem from Samarcand
Or spikenard in this rude disguise
Or other costly merchandise?”
“Nay I am but a lump of clay.”

“Then whence this wondrous perfume-say!”
“Friend if the secret I disclose
I have been dwelling with the rose.”
Sweet parable! And will not those
Who love to dwell with Sharon’s rose
Distill sweet odours all around.
Thou low and mean themselves are found?
Dear Lord abide with us that we
May draw our perfume fresh from thee.

There is a friend of mine who is a lot of fun. She's from South Africa and she has kids about the same age as some of mine.

When my daughter is a bit better I'm going to pop my husband into another room and we can all camp in my room and have a sleep over.

I used to have to go to sleep at 6.30pm but now my lights out is a bit more realistic we could do it. Not much fun having a sleepover with lights out at 6.30pm and no talking!

My daughter says she has heard of the Red Hatters here in Auckland.

How do you fill your days Ann?

Do you have someone to help with your shopping?

Do you feel you are making any progress?

Keep smiling and I'll be praying for you too, that tomorrow will be beter than today and that you will not go backwards but would begin to go forward.

You are doing great!

H Mouse

obs ann
Veteran Member

Date Joined Jan 2006
Total Posts : 679
   Posted 1/13/2006 10:21 PM (GMT -6)   
Hi Mouse,

Gosh it takes me a long time to get around this forum. I post on other boards on here too, like anxiety, Lyme, etc. and then read the really sad ones where the folks are so much sicker than we are. Puts things in perspective for me. I was always a Care-giver, and it's still in my blood. I want to help or at least pray for so many on here. I'm not adjusting too well to being on the Care-receiving end.
I think that when any of us 'lesser-sick' people get "depressed", we should go read the threads on this Site from Really sick people.
Whenever I've ever gotten depressed, realizing that others have it so much worse than I,  all around this globe, has snapped me back to more clear sightedness.
Like those folks from Third world nations and those terminally ill, etc.

Anyhow ~ That's a beautiful poem from Streams in the Dessert that you posted. A Very Dear Friend, bought me a copy of that book just last year. I hadn't read that poem yet though. I bounce around in it, instead of reading that day's devotion and seem to do that with all dated Devotional Books.
And read catalogs from stores from the back to the front too. ha.

6:30 ??? Are you sure you have CFIDS ? Ha !!!
I only say that, because most of the CFS people I know are night-owls. Especially me. My days and nites are reversed.

I hope you all can have that sleep over sometime soon. That sounds like fun.

My husband does all the shopping and erron running. (Never learned how to spell 'erron')

How do I fill my days ? Oh my. My body doesn't cooperate to do much, but my brain, even though it's inflamed, wants to stay active. So when I decide to have internet service, I'm on the computer (too much), so then I go off line for some time. Then I get mentally bored again with just reading in bed or TV, so I call the ISP people to plug me back on line. Ha.

But I do love nature very much and have tons of stray cats I've adopted, after they've come to my door and I love birds, so we feed them.
And racoons and possum come and eat the cat food that's outside at nite and other critters come during the day to eat the bird seed. So there's plenty to watch, day or nite.
I love my flower garden too.
I love when friends and family call on the phone. That's my #1 favorite, because I'm alone 95% of the time.
I try to write to CFS folks, who don't have computers, but pen writing is hard sometimes. Hand cramps.

Do I feel like I'm making any progress ? Well, my flu-like symptoms have gone down some with the Diflucan, but my head is more inflamed & brain fogged and the body pain is worse, so yes and no. Ha.

Have you ever visited the Rest Ministries website ? I don't have their website in front of me, but you could type that name into a search.
I also like www.rbc.org site and www.backtothebible.org and some others like it.

I'm glad we all found this Forum. It's been a real blessing to me, in many ways. And has definitely been more beneficial for me than the whole rest of my other days on this Internet.

Hope you're doing well to GrannyCFS. More power to ya Red-Hatter. (o: }

Thank you for your posts Mouse. You're a Blessing.

You also are "doing great" (o: }

Keep On.

house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 1/14/2006 5:46 PM (GMT -6)   
Hi Ann and Granny,
I have been able to get around the world looking up all the sites you recommended! It's always good to know what is happening out there and finding out about new things.

Your day sounds a bit like mine Ann and I found that if I was feeling blaah it was a good idea to think of someone else who was sicker than me and ring them, like you do.

I used to not be able to sleep at all. 3 Days and nights was my longest and I was really sick. It was pretty bad. Then I found if I closed my door at 6pm and no one was allowed in until the morning. If I lay really still and quiet and prayed, eventually I would fall asleep. Then I got some medication that helped. But when I'm not so good then my sleeptime is really early and I wake up at about 7-8 am. My daughter does the same but her friend who has ME too has the reversed day time /nightime thing and so did a lot of the people that we knew through a support group.

Like you I go through the catalogues the wrong way! But I love those catalogues! Managed to do all the Birthdays and Christmas through the catalogues. My husband is away a lot so we have had to have people live in to help with kids etc for the last 12 years. Amazingly we have had really great people, bar one, who was smoking Pot with my 14 year old!!

Now the kids are 17 and 18 upwards I think we can manage with just the outside help and my husband is taking 3 months holiday each year for the next few years then he'll retire.

Hopefully I can slowly get more mobile. My biggest wish is for my daughter to get well. Not much fun to spend all your teenage years in the house. Her twin is starting University or what I think you call College, this year. She'll do a degree in communications.

My eldest son is 29 and is the Pastor of his Church. He's got 3 kids and his wife is lovely. They met at school and have been friends since they were 14 and 15.

My 18 year old son dinged his car yesterday but thankfuly he was ok.

All your cats must keep you busy Ann. They are great company aren't they.

We've got 3 cats (all found on the side of the road!) and a Wiemerana dog. We live on 10 acres of land and have are a few chickens and some sheep.

This last year I've been planting seeds and have grown some grapes, Pears, roses and veges that way.

The roses have been the most interesting as have some new varieties now.

The birds are pretty too. I think they think we are part of the furniture as come quite close now!

Those flu like symptoms you get I find I get after I do anything that my body isn't ready for but now they are lessening. The back of the neck and face pain used to be bad but slowly is getting less severe and not so often.

My problem is that as I'm starting to walk my feet and legs really hurt, hopefully they will get more used to it soon. My daughter has the wrist and hand pain. Mine has come and gone thankfully but they get a bit stiff abnd sore at night. However can't complain, as I feel as good on my bad days as I used to feel on my good days when I was really sick.

So hang in there Ann, even on the bad days know it will get better. When you do we'll all go out in our Red Hats!

Take care


New Member

Date Joined Jan 2006
Total Posts : 5
   Posted 1/24/2006 6:13 PM (GMT -6)   
Oh, I really enjoyed the poem you wrote. I love what I call "homemade" poetry. Its one of a kind you know, never nothing quite like it. With your permission, I would like to take my dr a copy of it and read it to him at my next visit. I know he will enjoy it and it will help keep him grounded to the survivors of cfs, if you will. I too spend lots of time in bed, talking to the only One who truly understands this illness and thanking Him for the positive attributes in my life. They can sometimes be hard to remember. I'm feeling a crash coming on as I sit here in front of my monitor but am enjoying reading all the posts and don't want to shut down right this minute. Because my hair stays in disarray, the red hat (personalizing it with lots of pretty beeds and stones) sounds like a good idea for me!! I'll have to dig out my red lipstick and keep it at bedside for an added punch. :) Oh, I almost forgot to mention this ... my husband put a baby monitor on the front porch and the speaker at my bedside so I can hear the birds and etc whenever I want right there in bed.

house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 1/25/2006 1:35 AM (GMT -6)   
Hi Southern Bell,
it was good to get your post. You are welcome to copy the poem. I hope your Doctor likes it.
I think one of the positives in having this illness is that it gives us options to try something new.

The monitor sounds great. What a great way to still feel a part of life. Do you get many visitors? I know what you mean about the hair thing! Mine just keeps growing until I take a few inches off it with the scissors.

I can just imagine you sitting there with your red lipstck on, go for it.

I actually made it out of my PJ's today and everyone was suitably impressed.

I hope your crash isn't too bad or for too long and you are feeling a bit better soon.

Keeping you in my prayers.


obs ann
Veteran Member

Date Joined Jan 2006
Total Posts : 679
   Posted 2/1/2006 10:27 PM (GMT -6)   
Hia Mouse, How are you doing ?

I haven't been on the CFS board, cuz I avoid it like the plague. (don't know whether to laugh or cry at that one)

Hope you're doing alright.

Because I also have been Dxed with Lyme, I keep hoping that the CFIDS will go away when and if the Lyme does.
At least if I focus on Lyme, I can think, well, when they try the Antibiotics, then maybe I'll get better ... but if I think that's it's the CFS making me this sick and them saying there's no known cure for that ... well, I get really bumbed out and don't want to think about "not getting better", especially when I've only gotten worse in the last 3+ yr.s.

So, anyway, that's why I avoid the CFS board, I noticed.

But I felt rude not coming back to say HI to the Mouse and wondered how you are and wanted to say HI.
It was so nice to meet you here and read your poem and talk with you.
Sorry we have to meet under these conditions though. But that has been the only Plus of all of this ... the great ladies I've met with CFS, FMS, etc. etc.. all keeping the faith, together.

They have a compassion that I haven't found on other Forums, if you know what I mean.
And when I've met with them locally here, it doesn't take forever to get to know each other, as it does when all are healthy. Ya know ?

Something about suffering being a common bond And Who you know. That part I'll forever be thankful for.

Welp, hope you're doing well Mouse and I'm thinking about you and glad you are finding your way on top of this thing.

Hugs in His Love,
Late Neuro-Lyme & CFIDS. 

house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 2/2/2006 2:26 AM (GMT -6)   
Hi Ann
it was so good to hear from you. I went to the Lyme site to find out a bit more about it. I'm sorry you have a double whamy. Doesn't seem fair to have one of these illnesses let alone two.

But you know people do get well from CFS too. I know some personally, so there's always hope. Anything can change in a day. It's something to hold onto.

Like you I like the people I meet who have been through the tough stuff. They're real and they've had a chance to test out if what they believe is real.

Believe me, if God hadn't been real, I would have found out by now. There was a time when I couldn't sleep and medication damaged my kidneys. I prayed as was on my own and someone walked into my room, turned me over and said sleep and I slept. There was such a peace.

It's been tough at times but such amazing things have happened I know Gods so real.

Why aren't I well? Who knows but I know that now is just a blink in eternity and this isn't going to last forever. One day we are promised a place where there will be no more sickness or crying. Sometimes I've just felt so loved it's unreal (and it's not the medication!) so I know that God is a God of love.

Plenty of people haven't understood how it feels to be sick but I know that He does and He cares.

Remember that you are just so precious.

I really pray that you will get well and that you will begin to go forward and not backwards. that you would begin to make progress now.

We've had a recent miracle. A daughter that my husband lost 34 years ago through divorce has made contact. She's so lovely. Her sister went with my husband and she went with her mum, so she's found her sister and is looking forward to meeting her other 5 brothers and sisters.

See, you never know what tomorrow may bring. :)

Good to hear from you so keep in touch when you can.

Heaps of Hugs back!


obs ann
Veteran Member

Date Joined Jan 2006
Total Posts : 679
   Posted 2/3/2006 3:03 AM (GMT -6)   

Hia Mouse,

That is such great news about your husband's daughter.  Praise God.

What a wonderful thing to have happen. Her family can be complete now too.

I appreciated what you wrote.  Pain lately has made it hard for me to grab hold of that inner strength we're provided, but my husband has said, Remember the Footprints in the Sand Story.

That helps me.

I wanted to tell you how much I appreciate your posts and your spirit and that they bless me.

I get discouraged about "not getting better",  but reading what you write, gives me hope.

I know, as we said, most folks on this site have worse diseases than we do, and I'm sure they want to get better too.  I shouldn't be so selfish.   I guess I'm just feeling more "useless" than anything.  My housework doesn't get done like I'd like, and that makes me feel guilty.  My husband is not putting the guilt there, but I feel sorry for all the added extras that have been added to his days.

anyhow ... it's Always nice to come and read what you've posted.

God Bless you and I'll be talking with you again, God willing .... or if you don't run off with those Red Hatters. :-)

Have a special day, for you.

Love,  Ann

Late Neuro-Lyme & CFIDS. 

house mouse
Regular Member

Date Joined Dec 2005
Total Posts : 24
   Posted 2/3/2006 4:17 PM (GMT -6)   
Hi Ann
thanks for your encouragment too. We all need to hear good things.

Hey you should see my house. I know how it feels to have everything a mess and have to live in it. And the guilt that we are making someones life besides our own difficult. But you know we didn't choose to get sick and this is just life for real.

I was reading something the other day about the Mary, Martha thing and it wasn't the usual take on the story. This one was the idea that there are a lot of people out there doing a lot because they are really caring and there's nothing wrong with that,it's good as we all need each other, but when we can sit at His feet, then we are spending time with Him like Mary and that's what He wants.

We have been given a gift of time aside and we can just look up and spend time just asking Him to come and sit with us.

Another time when I was really sick and hadn't been able to eat properly for 2 weeks, because the food was causing reactions, or sleep properly, He came and sat on my bed .

Again the same beautiful peace and love just flooded over me. But what always makes me feel like crying was the fact that I knew as I felt myself falling asleep, He was going to stay there all night while I slept. He didn't come only to make me feel better, He wanted to spend time with me. That's real love.

That need for companionship is so real. This can be alonely,humiliating disease.

I bought these really neat Zebra striped pj's but it is really embarrasing when someone I've never met turns up and there I am sitting in my messy nest in my Zebra pj's.

Mind you after all these years I wonder why I still look for day clothes!

I could look really tidy all tucked up in bed if all I did was read a book and do my hair!

But I keep sane by writing, drawing etc and it all has to be within reach. If I ask anyone to put it away I have to ask them to get it again and I hate asking and I think they would get sick of it ( near Christmas time they just walk past my door and say "NO".

That's when I know I can't ask for one thing more! Especially when I know I need a jug of water or other essential), so when the room gets me down I look out the window.

Got to admit it does feel like heaven and I do love it when it's all tidy - you know, tidy house tidy mind!

But here we are and that's how it is until it changes one day.

What amazes me is not that I've lost friends but that I have any left!

But my best ones come and sit in the mess with me, with my messy hair and Zebra pj's.

However besides all that I do really feel for you. And I'm praying for you each day. That you will make progress. I was reading in the Bible about how God knows if we are under too much strain or difficulty for too long how discouraged we can become and do things we wouldn't normally do. So I think it isn't out of order to remind Him that He's God and we're not, so enough is enough. ( I guess if it is out of order He'll let us know).

Take heart.There has to be something come out that is good from all this, otherwise there would be no justice.

The footprints in the sand story is beautiful.

May you know that companionship in a special way today.

Love and hugs

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