Hi, I'm New to the Forum

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!

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!

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!

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

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!

Granny

Hi Mouse,

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

G

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.

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.

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.
Ann

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.

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,
Ann

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

Thank you Mouse.

So nice of you to share all of that with me, and I feel like we'd make a great pair in our gorgeous wardrobes and hair-doos. (o: }

We'd sure have a great time looking out that window of yours. That's sounds so beautiful.

And we'd have a great time reading things together.

I pray The God of All Comfort, comforts you with the same comfort you've given me.

You've become a great long-distance sister and friend.

A Hug through Him from me.
In His Love.
Ann