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Chronic Illness - Support Group

post #1 of 33
Thread Starter 
Hiya Mamas.

I search the web every once in a while for a support group for caregivers of partners with Chronic Fatigue Syndrome, but haven't found anything I like. But I LOVE MDC and thought I'd seek support here since it seems that some of you are going through or have gone through similar stuff.

My DH has Chronic Fatigue Syndrome and has had for almost 4 years. When he's sick (like now) I'm so low, depressed, void of emotion. When he's good, I'm optimistic and hopeful. Yet it's been going on so long... I wonder how long I can deal with this, or if he'll ever get better at all.

Does anyone else need a support group? I do!!!

I'll tell more of my story if someone out there is listening... Tonight I caved and ordered a pizza for dinner -- expensive but necessary. I've been taking care of dd full time with no breaks for four days now, as well as doing all the housework and everything else while DH lies in bed. Last time I tried to make dinner in this state I ended up slicing my finger open on a knife and getting 3 stitches... pizza is cheaper than cab fare back from the hospital. And all the hospital emergency rooms are restricted here due to SARS anyway... :ignore

Thanks for listening! Anyone else need a shoulder?

post #2 of 33
I haven't experienced this, but I'm listening.
post #3 of 33
i have an undifferentiated connective tissue disease.. Which only means they know something is wrong, and they know it is an auto immune problem, but i don't have any blood work to show specifically which one.. So i am in limbo until i get worse.. (sigh)

I can totally relate to the fatigue... It is sometimes overwhelming.. The thought of getting out of bed is almost too much when it hits full force.. I don't know how many times i had a dr tell me i was depressed, or that it was my thyroid.. It was neither, and it took over 2 years for them to figuire it out.. And they still don't know, but at least i have a dr who listens now so that is always a bonus...

I am here to commisserate with you anytime you need to.. It is very hard to look healthy, and feel like sh!t..

Warm Squishy Feelings...

post #4 of 33

I can only offer HUGS

I have an auto immune disorder and CFS comes in at some point and time
and I have days like your dh except I can't lay in bed often

My poor teen though has been in your shoes helping me out and I know its no fun

so an open ear and (((HUGS))
post #5 of 33
I can relate. My DH has Multiple Sclerios. The change in seasons just kicks his butt This past week he has been in bed all the time. Had to see his urologist who put in a cather. Caused poor DH to scream in the office. Turns out it wasn't adjusted right-stupid doctor.
Anyway I'm hear and listening.
post #6 of 33
Thread Starter 
I often console myself in that CFS is neither degenerative or terminal. MS is awful... I hope that your dh's health is good and that he's stable... three cousins of mine had/have (one passed away from breast cancer) MS and it's an awful disease. Then again, I've seen people do really well and be stable for many years. From the sounds of it, Mommasgirls, your DH is pretty sick... I'm so sorry.

Does commiserating help anyone else? It's so crazy but when I feel like I'm sharing and that other people are hurting too, the hurt doesn't hurt so much.

My dh 'contracted' (very coincidental) CFS after having minor heart surgery. Basically, the docs scared us silly and said that if he didn't have the surgery, he would surely fall over from a massive heart attack and die before he was 30. Well he's 30 now and hasn't recovered from the surgery. At least the heart issue he had before is no longer threatening his life... I have to believe that the docs were right or I'd just drive myself mad with anger.

Anyway, today was a better day. DH felt a little better and made me breakfast (oatmeal in the micro -- better than nothing!) and coffee, which made me happy. Little things become so important when the big ones are a mess.

How are you coping, Mommasgirls? Do you go up and down with your dh's health the way I do?

CerridwenLorelei and Pynki, here's my real question as the healthy person -- are you waiting to get 'better,' or are you living life now? Do you have plans for when you're 'better'? It's so hard for me to think about the future because we just don't know if dh will ever get any better than this...

HUGS to you all.
post #7 of 33

JJ there will be

no "better" here *BUT* I seize the good days as best I can and
I am getting back on some of my herbal supplements

I have the pacemaker which is the end all be all of "better" but recently had a revision as the lead had moved last year and caused some permanent stomach damage
I have days when I think I will get to do what I want with the criminal justice studies and other days where I think yeah right

I don't have time to wait with running the house and homeschooling four kids.

post #8 of 33
I don't wait to feel better.. I wish i did feel better.. I remember feeling better.. I remember being really spastic, and full of energy.. I WISH i felt that way again.. I do what I can on the days i can.. I still have 2 little boys (and one on the way) to take care of as well as a house and a family... Our house is usually a mess, but i do more when i feel better..

We got pg now because we don't know if i will ever feel better, but i will most definately probably feel worse.. I have felt better with this pg (after the morning sickness) than i have in over 2 years.. It's just the way the disease process works..

You take the good days with the bad.. Most of my family understands, but dh family is another story.. I wish i had a name to give them for which disease process i have so they would stop thinking i am just making it up...

Sorry.. Tangent...

No, i don't wait to feel better to live life, but on the days i feel really bad, i wish i could live life better.. If that makes sense...

Warm Squishy Feelings...

post #9 of 33

Pynki I can so relate

to what you wrote

"it is hard to look healthy and feel like sh**"
I look on the outside perfectly healthy and one who didn't know ....
post #10 of 33
jjquilter-yep the emotions are definately tied into how DH is feeling. It's tough because even though his parents live close he won't share how he's feeling with them. He doesn't want his mother to worry. So I suck it up and take care of everyone . Today was frustrating because I am trying to clean in preparation for my youngest b-day oarty next weekend,help DH,and help my oldest with a school project. Everyone needed something all the time.
Hopefully tommorow will be better.
post #11 of 33
Thread Starter 
I totally understand the feeling of not being able to 'show' any symptoms and not have people believe you. DH is the same way -- as if he had a slight flu all the time, but no big red spots to shout out 'I'm sick.' I ask my dh to tell me how he feels sometimes, just so I know instead of assuming by his behaviour. Poor guy... I can't imagine how he must feel to be so sick some days that he can't get out of bed. He's been out of school (on leave) for more than a year now and is feeling pretty useless. We plan/hope to return so that he can finish his PhD, but as time passes, it's looking less and less possible.

Until tonight, in fact, my father kept insisting to me that my DH was going to get better. I think that by being generous, kind, supportive, and everything he can be, that my father thinks he will be able to 'fix' my dh, or at least help to get him fixed. Tonight, my dad said something to the effect of "I will be supportive no matter what." I think he finally realises that there's no guarantee that dh will ever recover, ever. Sad for all of us, but great to have family support when things are tough.

How do you two, CL and Pynki, keep going with kids to take care of? I have one, but I'm a healthy person... I can chase and nurse and do all the other stuff I need to do, even if I'm emotionally and physically spent. I don't have to contend with an illness too... I feel for you two.

Thanks you guys... it's so cathartic to get this out to people who understand. The only person I can really vent to (other than dh) is my best friend who's 8 hours away, and I always feel like I'm burning her out. I want to keep my friendship with her loving and joyous, and not bog it down with my heartache about dh's illness.
post #12 of 33

I have a wonderful teenage

son who pitches in and helps with the house and cooking on the days that I just can't do it
other times when he is not here I *have* to do it and just do the best I can

I have been known to set the little ones up with a snack and a drink and movie on my bed in a desperate pinch.

sat was a bad day and dh had taken teen to help him.
In between tossing my cookies, I would take some laundry to be put away get it up, get sick, clean the kitchen , go be sick, vacuum, gs etc
Played some easy to play on the bed games with the two youngest ....
and spent what time on the bed that I could ...
post #13 of 33
Thread Starter 

CerridwenLorelei, I have no idea how you do it. You are amazing... If I could come over and help out, I would. Believe me. I spent 16 weeks vomiting multiple times a day pregnant, still cleaning, cooking, taking care of DH, all that stuff with NO KIDS, and that was hard. YOU'RE A SUPERWOMAN!
My sad day--

DH left for the weekend to visit his mother and I sent him away with a fight. He has been on leave from school for more than a year with no signs of recovery and can't make a decision whether he's going to be able to go back or not, ever. We've been living on savings this year and I just submitted my resume for a job that sounds great -- the recruiter also sounds very excited about me, which makes me happy. But DH won't commit to taking care of DD for a few hours a day. It might get in the way of his recovery, he says.

Two days ago he criticised how I was mopping the kitchen floor and said that he could do it better, but he never has. DD was whining while I was doing it and he criticised me for being a neglectful mother. He whined about having to do the day's dishes early (his only job) because my mother was coming over to take care of DD so we could go to the show with tickets that my mom gave us. It goes on... He spends his days on the sofa writing a computer program (while learning a computer language) and reading scifi.

DH is loving and caring, but he doesn't do much to care for himself, in any way. I finally had him start doing his own laundry and right before I was ready to clean the diapers this am, he put in a load for his trip this weekend because he had run out of underwear... I nearly pulled it all out, soap and all, I was that angry.

Sorry for the rant... this is really hard. DH is a really intelligent man who has done fabulously well at school and has spent the past few years just biding his time... I feel like a single mother with an adult child at home. Our love life is non-existent but I still love him dearly and want the best for all of us. But SOMEONE has to support this family, and I don't see him doing it. I'm not really sure what to do, except start making decisions for all of us without consulting DH. :cry

Thanks for listening.
post #14 of 33

oh jj!


Is he on anything for depression? It sounds like he has it ( and a lot of us with these kind of things do get it)
Especially with the criticizing of you and the house and dd.
and are there some classes he could finish up online??
Sounds like he has the depression and some of the feel sorry for myself
He NEEDS to see someone to help with that. There are places out there that work on a sliding scale fee or even free.
ARe there any CFS support groups in your area? Maybe you could get one of the counselors from there to come talk to him
Yes he is sick, yes it is hard but you CANNOT do it all by yourself. Even if you end up having to have home health or a mothers helper come in
Having to take care of DD may even help him get back on his feet a little
and if he is bad on a day he has to watch her there are things that can be done where you don't have to go far from the bed ..

I am no Superwoman LOL
I just grew up with two weird parents that had the :doesn't matter how sick/hurt you are -you get up and go to school/work anyway.
And of course they didn't understand when the school called gma to come get me because I had a fever or something
Poor dh took me to the er on a date and the next day I was at the college and work after coming home at 4 am. He asked "what are you doing here?" and I asked "where should I be???" LOL
he needed to run that errand Saturday very badly so I just made the best I could of it. But there are days that my best of it just is NOT there and the old bed is my good friend ...

I hope things get better for you three and soon
Feel free to PM or email me
post #15 of 33
Thread Starter 
Part of my problem is that I feel like I'm like you, CerridwenLorelei. I mean, if I'm not on my death bed, then I go about life as normal. A couple weeks ago I had mastitis, fever of 103, the whole works. After about six hours in bed, tylinol and a heating pack, I got up and continued on with my life. DH wanted awards for helping out... I walked around for the next four days with a heating pack in my bra, warming it in the micro every hour or so, and through the infection of the other breast. It was the only time in my life I've had a double D!!!

Anyway, the point is that I can't understand why/how he can just lie around all the time. And it's been three and a half years... I just AM NOT CAPABLE of doing nothing for that long, and it sounds like you're the same. I just don't understand.

I'll look online for a therapist for him this weekend. He won't go to support groups - he doesn't feel like he needs support. He says that I should go since I'm the one bothered by the whole thing. The worst is that he's great when other people are around, putting up his best face. Sigh. We wouldn't still be together if I didn't love him so much, but I do, and that's good for all three of us.

Thanks, CerridwenLorelei.
post #16 of 33
Thread Starter 
As to your question, he really can't finish school remote. He's in the middle of a PhD in California, and we're currently in Toronto. It's a lab-intensive, collaboration-intensive program and he's already finished all his coursework.

Crazy... I went to CA with a master's degree and worked for 5.5 years -- he went with a BSc and came back 5.5 years later with a master's degree. ARGH! He's also older than me, by year and a half! Poor guy.

We do have lots of support, though -- no worries. My parents help out financially and I have lots of family around that I visit regularly. No babysitters though, but having family-as-friends is great. I also have a close friend down the street who takes dd once every few weeks to give me a break.
post #17 of 33

More (((((HUGS))))

Good luck with the online therapist
Despite his refusal he needs one ! I know I have BTDT !!

I don't know how Canada works but do you have disability there or can you check into it?
Right now I guess going out of the house isn't much of an option with SARS is it?? *sigh*
post #18 of 33
((((jj)))) That's really rough. My marriage is going through something similar.

I have CFS and Fibromyalgia - a chronic pain condition. Most of the time I'm in pain and/or wiped out. I've been unable to work for about the last 2 years, although I did work (against doctor's orders) for about 6 months last year, because my dh got laid off.

Because I sometimes have good days, or good hours, and because I don't look sick, my dh has a hard time believing deep down that I'm really sick, I think. This is one of the many ways that these two diseases are destroying our marriage.

Because he has been the breadwinner for the vast majority of our marriage, he has always held it over my head. He refers to the money as His Money, the apartment as His Apartment, etc., even our bedroom as His Room sometimes. That last one he corrects himself on when I call him on it. If I call him on the other stuff, he gets mad and says that he's right because we agreed before we got married that I'd work, too. Apparently my getting sick(er) was a violation of our marital covenants.

My illness is made much worse by the climate and air quality here in this area. Last year, I went out to Seattle, (where I used to live) a couple of times, and each time I felt remarkably better. So, as an experiment, my daughter and I went out there for an entire month. There were two reasons. First, to see if this effect was genuine, or just the effect of going on vacation, because being there for a month, with Cora and not dh, was not going to feel like a vacation. And second, hopefully it would jumpstart some kind of healing that could continue back home in DC.

I did feel better, and better enough to work and lead a normal life, but it did not continue when we got home. The doctor that I saw out there (an MD who is also an ND - Naturopathic Doctor), and my MD here, a fibromyalgia and CFS expert, both agree that it is genuine, and that I would be in better health there, due to climate and air quality. Apparently, both conditions are endemic out here, and occur with far less frequency in that area.

Something has to change with regards to my health. I take 9-12 medications per day, including a narcotic patch to relieve my constant pain, and three other pain killers for breakthrough pain. When I was in Seattle, I was able to cut my medications drastically, and I suspect that with more time and medical supervision, I could cut more.

DH, however, made it clear before the trip, and has continued to make it clear, that he will not move out of this area, regardless of the benefits to my health. It hurts terribly because if the situation were reversed, and his only hope for health was to move to texas or new york city (my 2 least favorite places - no offense to anyone from there - to each her own right?) my reaction would be to sell everything I own to get us there if we had to.

We've recently decided, for financial reasons, that dd and I will go out to Seattle for a year so that I can be well enough to work. I am scared for our marriage, scared to go be a single parent again (dh adopted dd when she was too young to remember - she was not originally his), scared for how dd will handle this. I also worry about what happens at the end of the year. Because then I still have to face the fact that this man who I've known and loved for half my life, who I let adopt my daughter, doesn't love me enough and doesn't want our marriage and family enough to move for the sake of my health. He has chosen between my health and our family and his interests. So in a year I'm going to have to choose between my health and my family, which includes giving my daughter the only father and the intact family she's known and thrived in.

There are times when chronic illness makes life feel not worth it.
post #19 of 33

Oh Kate that is so not right nor fair

I asked my dh once how he could stand it and he told me

"in sickness and in health doesn't mean I get to choose to only be here during the good times. It means all of it , thats what I signed on for"

I am so sorry your dh is not taking your health into consideration even with the MD and ND saying yes this is helping and yes this is good.
I worry about your dd seeing dh treat you not so nice though
Good luck with your move to Seattle. Maybe after a year he will realize that he misses you and how unfair he was being!
post #20 of 33

Re: Oh Kate that is so not right nor fair

Originally posted by CerridwenLorelei
your dh is not taking your health into consideration even with the MD and ND saying ....
I worry about your dd seeing dh treat you not so nice though ...
That's pretty much why that decision that I'll have to make in a year is already made. I don't want her to think that that's an okay way for her, or anyone, to be treated in a relationship.
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