Getting to us all

Discussion in 'Fibromyalgia Main Forum' started by Andrew, Nov 12, 2002.

  1. Andrew

    Andrew New Member

    Hi!

    I'm a new (UK) member with a wife suffering from CFS.

    My wife's had the syndrome for 15 months. For most of that time she's been bedridden. On her better days she is able to come downstairs for dinner, and maybe to sit/lie on the sofa for a short while, but no more. Her bad days she spends in bed, unable to do more than listen to the radio.

    Our doctor's been excellent- informed and interested, visiting once a week or so, and my wife is prescribed amitriptyline, which helps- marginally. She also is visited by a homeopathic practitioner and an osteopath, and is on a very restricted diet- no wheat, yeast, sugar. She takes a wide variety of mineral and vitamin supplements.

    I gave up my job recently, for one which is largely home-based, and we are lucky to have family in the area who are a tremendous support, along with the neighbours. We have two teenage daughters who are generally very helpful around the house (!). In other words, all the support we could want is in place.

    Nevertheless, it's difficult not to feel that our lives and family are falling apart. I know that that's the deal, and that I'm not the one who's suffering, but I'm finding it hard to sustain the level of both practical and emotional support that she requires. My wife hasn't smiled at me for 15 months, we haven't been out of the house together for that time- no holidays, no day trips etc. She is also (understandably) resentful if I feel I need to get out of the house for a while- unless it's work related, or shopping. After all, she's been confined to the same room for all that time!

    What can I say to her when she says that she's never going to get better? What's the strategy for keeping any sort of meaningful marriage in these circumstances? Any ideas for further treatments? (Acupuncture gets a good billing in these pages, and we've not tried it- anyone???)

    Sorry- just having a bad day, I guess!!
  2. Andrew

    Andrew New Member

    Hi!

    I'm a new (UK) member with a wife suffering from CFS.

    My wife's had the syndrome for 15 months. For most of that time she's been bedridden. On her better days she is able to come downstairs for dinner, and maybe to sit/lie on the sofa for a short while, but no more. Her bad days she spends in bed, unable to do more than listen to the radio.

    Our doctor's been excellent- informed and interested, visiting once a week or so, and my wife is prescribed amitriptyline, which helps- marginally. She also is visited by a homeopathic practitioner and an osteopath, and is on a very restricted diet- no wheat, yeast, sugar. She takes a wide variety of mineral and vitamin supplements.

    I gave up my job recently, for one which is largely home-based, and we are lucky to have family in the area who are a tremendous support, along with the neighbours. We have two teenage daughters who are generally very helpful around the house (!). In other words, all the support we could want is in place.

    Nevertheless, it's difficult not to feel that our lives and family are falling apart. I know that that's the deal, and that I'm not the one who's suffering, but I'm finding it hard to sustain the level of both practical and emotional support that she requires. My wife hasn't smiled at me for 15 months, we haven't been out of the house together for that time- no holidays, no day trips etc. She is also (understandably) resentful if I feel I need to get out of the house for a while- unless it's work related, or shopping. After all, she's been confined to the same room for all that time!

    What can I say to her when she says that she's never going to get better? What's the strategy for keeping any sort of meaningful marriage in these circumstances? Any ideas for further treatments? (Acupuncture gets a good billing in these pages, and we've not tried it- anyone???)

    Sorry- just having a bad day, I guess!!
  3. JP

    JP New Member

    Hello Andrew,

    Your note is well taken. This is no easy thing for either partner in a marriage and we all deal with this in different ways. It is important to note that our experience and level of ability varies as well. I can only hope that you and your wife have better days ahead.

    For myself, I encourage my partner to leave the house, have fun, and be with friends. I am the one who has the disability. If my partner is happy, I have a better home life. I could never pretend to meet all of the needs of another, even on my best days. I am not sure that this is what you need to hear in that your experience is so different, and I guess I want you to know that it can be better. There are possibilities. It is important to feed and nurture your own soul.

    Hang in there...and acupuncture is good medicine...not a cure for me and it is helpful. It might also be helpful to talk with your wife a bit too. It's okay to share the hard stuff. I encourage it, even though it is tough to hear at times...it brings us closer in many ways.

    Jan
  4. pam_d

    pam_d New Member

    You sound like a wonderful partner in life, who is feeling exactly what you should be for someone in your circumstances. I am lucky enough to have a supportive husband who also works out of our home, and we have one teenage daughter. I do not have near the degree of disability that your wife does, but I am very grateful for the times my husband has been able to do the school drop-off & pick-up for me, run for groceries, and do all the heavy lifting on days when I just can't do those things---him working at home is a definite help, so I'm sure your wife is appreciative of that, even if it's hard to express that. I'm sure she's going through a grieving process of her own, as we all do, and especially since this has affected her former mobility to such a severe degree.

    Are you able to get out at all in the evenings, when your daughters are home to help? My husband goes every Thursday to have dinner with a guy friend from his schooldays & listen to blues music---even if I'm having a hard FM day, my daughter's home with me & he gets to enjoy the evening & not even think about FM or caring for me or anything but relaxing. You need something like this so YOU can stay healthy mentally--it is very tough for a spouse without some kind of outlet...

    Also, I'd encourage you to BOTH come here to this site & read everything you can. I've said many times, there's not a time that I log on here that I don't learn SOMETHING, some little nugget of information. It sounds like you have excellent medical support for your wife, but there are always things to learn---many people on this board are trying various things, from different meds, to supplements, guai treatment, etc, and many are having good results---I've learned a lot of helpful things here. Visit here often, people here are great.

    And Andrew--don't feel bad about having a bad day, you are doing a great deal for your wife under very tough, stressful circumstances. You deserve a great deal of credit for bearing up so gracefully. We all have bad days, both the ill person AND the caretaker, we need to make sure both are taken care of!

    Hugs for you & your family,
    Pam
  5. sb439

    sb439 New Member

    Has your wife seen a specialist for ME/CFS/CFIDS who is *not* a psychiatrist (beware of those!!!!)?

    Has your wife has had any of the following tests:
    Lupus
    Lyme disease
    antinuclear antibodies (mononucleosis)
    EBV reactivation
    HHV6 reactivation
    Chlamydia pneumonensis
    mycoplasma
    adrenal insufficiency
    full blood count, including full lymphocyte count
    test for intestinal bacterial infections/parasites by a lab that specializes in such tests
    test for parasites in the blood
    tests for heavy metal toxicity (e.g. mercury)
    test for allergies, e.g. milk, artificial sweeteners
    QEEG

    amitriptyline is not going to make your wife better, it just helps with some symptoms.

    Your wife seems seriously ill, and if you can afford it, you should encourage her to see a specialist for CFS who can decide which of the above tests (or even others) should be done as they fit with the particular set of symptom your wife has. The specialist has to be someone who does not believe all that can be done for someone with CFIDS is give antidepressants and something called CBT, cognitive behavioural therapy, but someone who has experience with the above kinds of tests, and treating patients in accordance with the test results. In the UK this means almost inevitably to see someone private. I've never regretted spending the money on this - otherwise I'd still be much iller, and that is in much more pain (with CFIDS) than I'm now.

    People with CFS do get better, but in order for this to happen, it is often required to find out first what exactly is wrong, and then treat it.

    A sympathetic GP is a wonderful thing, but not enough.

    you sound a wonderfully caring husband - I wish the two of you all the best!
    Susanne
  6. kadywill

    kadywill New Member

    You sound like my David! He does well usually and I love him dearly, but the main thing I need him to do is validate that I AM in pain and not exaggerating the symptoms! On my good days, he is good to remind me not to overdo, as is my tendency. He rarely gets impatient because he knows what this does to my guilt complex over this "syndrome." I call it another name, which I won't mention.
    Hang in there and continue to love her and make her feel wanted and beautiful. If I didn't look in a mirror and I only listened to what my husband said, I'd think I was Cindy Crawford!!! Good man!!
    Love and support!
    Kady
  7. Sandyz

    Sandyz New Member

    Your wife is so lucky to have you. You really are doing an outstanding job taking care of her.

    I agree with some of the others that she sounds very seriosly ill and very depressed. I think I would get another opinion and make sure there isn`t more going on
    with her.

    The other thing I was wandering if you noticed the care-givers message boards on this forum? That would give you a lot more support then you``ve been getting.

    Just don`t give up hope because people can go into remission with this and get better. There will be a cure someday for this, I really believe that!!

    [This Message was Edited on 11/13/2002]
  8. sb439

    sb439 New Member

    ... I agree with all you say about our staying as active as we can, while at the same time pacing us, so as not to overdo it; I know it's true from my own experience. And maybe Andrew's wife (apologies to Andrew, but we don't know her name, so this must sound weird to you) could be more active than she is. But we can't know. There are people with CFIDS that are bedridden and cannot get out of bed, or at least are/were at some time so badly ill that they couldn't. Some I believe are members of this board. (Acc. to my doctor it's mostly those with HHV6B or HHV6A reactivation, the one I don't have, thank god, but I always forget which one it is.)
    No offence intended, chocolat. Just a reminder that CFIDS comes in very different kinds.
    Susanne
  9. teach6

    teach6 New Member

    You took the words right out of my mouth. A year ago while I was still waiting to see a doctor who would/could dx me I could barely get out of bed. I had to be driven to appointments. Sometimes even going grocery shopping using the store's electric cart was too much for me.

    I've come a long way since then, but I am still unable to teach school any more, which was my lifelong profession. Since I am single I have had to find other ways to survive, but have been lucky to have STD and LTD while I await retirement and SSDI approval.

    My point is that our syndrome comes in all shapes, sizes, and intensities. What works for one of us may not help at all for the next person.

    When I was at my worst I kept my spirits up by talking on the phone, for brief calls, long ones wore me out, coming to this board when I could, resting a lot.

    Once I began to improve I was able to take an internet course which helped me learn to balance my life and pace myself. I continue to take courses from this source and hope to become a volunteer facilitator for them soon.

    Andrew, your wife is very lucky to have you, but one thing whe needs to learn is that unless you take care of yourself, by getting out, among other things, you will be no good for your children or her.

    I agree that seeing a specialist sounds in order in this situation. I live in the states and had to go out of my health care network to see my CFS/FM doc, but he has been worth the extra money to me. Without him I think I would probably be where you wife is, and I am thankful I am not.

    Best of luck to you.

    Barbara
  10. kadywill

    kadywill New Member

    I was a young O. B. nurse and I couldn't understand why some women just screamed and yelled and "carried on" when I just popped my babies out and went on as before. Then, I GOT SICK WITH THIS STUFF! Now, I realize, thank God, that we are all different and have different degrees of pain and tolerance to it. This is the same with fatigue. When I have a flare, I am bedridden and no matter how much I want to see my children or grandchildren or how much I want to make love to my husband, I can't. I have flares that last an extremely long time and I have pity for those around me. My husband is a saint and he loses it at times. I see that he wants to go out and eat or go out somewhere and all I can do is just "be". Sometimes, it is too much to feed myself and I still try to work full-time. What your wife DOESN'T need is someone who questions the validity of her illness. She cannot be "made" to feel better and I guarantee you that she will get up and get going WHEN she is able to and not a minute before. I know she would LOVE to fix gourmet meals and be a sex goddess for her husband.....I would, too, BUT, we have to understand that she may very well be unable to do that for some time yet. This illness has relapses and remissions, but my first episode knocked me out completely for over a year and it was pure hell. I am very thankful for the good days. Please trust her and when you get advice, understand that we ALL are very different and some are much sicker than others and may take longer to recuperate than some. She will get better....love her and support her as you would have her love and support you if you were sick.
    Love,
    Kady
    [This Message was Edited on 11/13/2002]
  11. sapphire

    sapphire New Member

    Hi Andrew,
    I just wanted to welcome you to the board. I'm so sorry you're wife is so ill. It sounds like she has a lot of support and that can mean so much. My husband is also very understanding. Noone else understands but as long as he does I can handle it. She is very fortunate to have you.
    You have gotten mostly good advice here. I just wanted to give you hope that she will get better. I was also bedridden for over a year when I first got sick. I'm still sick but I am so much better. Some days I can go to our business and work a few hours or cook a good meal. Usually I can't do both in the same day but I can live with that. In the beginning I didn't think I would ever be able to do those things again. Just don't lose hope and don't let her lose hope either.
    It took a long time for my husband to start going places without me. We had always done things together and I think he felt guilty leaving me home but actually I felt guilty if he didn't go. You really should get out once in a while just for your own sanity. I'm sure she would understand.
    Take care and hang in there. It will get better.

    Sapphire
  12. sofy

    sofy New Member

    I have no additional insight from the above. Just want to encourage you to continue telling your wife that you have to have a regular time away from home and her pain so that you can recharge your batteries and return to her, the woman you love. If she complains that she cant get away tell her that this is the only way you know to keep from winding up in the bed beside her with despair and that you will do everything in your power to keep that from happening. Let her know you still have hope that in time she will get better enough to be able to experience joy again but no matter what you will be there and you hope she will be forgiving of your human needs.
    I have spent many days sleeping continually and never refreshed and have often said the only thing not broken is my sense of humor. The fact your wife never smiles and seems unable to experience joy is indeed worrysome. She could very well be in a deep depression that has to be addressed first so that she can find out how to live. I wish you wisdom and strength.
  13. Andrew

    Andrew New Member

    Where to start?

    Probably by saying thanks to everyone who has taken the trouble to write- at length- in response to my post. I guess you all know how much it means to be the recipient of so much warmth, advice and good cheer!

    Hilary is also delighted, but isn't able to visit the website herself, as she can't sit up for more than a few minutes at a time.

    Thanks for the list of possible tests. When I say our doctor is good, I mean that he will sit down with us and go through that list, one by one, and if appropriate he will get the tests done- or explain why not. He's done similar things before, including sitting in our lounge for half an hour reading research findings from this very site! There is a highly regarded specialist in Leeds, who Hil. is waiting to see, though whether she'll cope with the journey is unlikely.

    Hilary's only real symptom is the fatigue, along with muscle pain, but as you suggest, she's got it badly. Whether or not to "fight it" is a big question. All we can do is say that the balance of opinion is no- when tired, rest. Certainly she is worse the day after "overdoing it"- eg. making a drink for herself.

    Don't overdo the wonderful husband bit (oh go on then!)

    a) I'm not
    b) I'm getting even less good- hence the posting!

    Many, many thanks to you all. I just wish I had some words of wisdom to return. I shall scour the other postings, just in case!

    Andrew
  14. nell-UK

    nell-UK New Member

    You've had so many good responses there's not much more I can add except to say I was very ill with M.E for a number of years, even worse than your wife Hillary. I couldn't speak, had to be turned, spoon fed and I communicated by blinking my eyes, one for yes two for no, I was like this for a couple of years and was bed-ridden for years before that. So I do know how bad this illness can get.

    But I am now getting better, in fact although not back to work yet I have a quality of life which I never thought would be possible again. It wasn't for lack of trying or fighting either, I faught it all the way and that's what helped make me worse. I too couldn't make trips to see Doctors but I was lucky to find an expert who makes home visits. If you are interested in seeing if he will come and see your wife (he does all the tests sb439 mentioned) his name is in my profile (click onto my name). We are not allowed to give website addresses out but if you want some more info leave a message for me and I'll give you my e-mail address.

    Take care and please tell Hillary it is possible to get better.

    Love Nell.
  15. Andrew

    Andrew New Member

    Got the Doc's name- thanks!

    Your case sounds quite amazing/inspirational. And you look wonderfully healthy too!!

    Better go and get on with some work I suppose?

    Andrew
  16. sb439

    sb439 New Member

    Your GP will not be able to decide which of the tests I mentioned it would be reasonable to do and which not. Only someone who has seen at least 100 patients with CFS and is experienced in these tests would be able to. Moreover, the list I've given is far from comprehensive. A good CFS doctor will choose the tests and medications according to your specific symptoms. It's not just what to test for, also which tests to use (there are often many), which laboratories to use, and how to interpret the results. (My doctor in the UK, the same Nell is seeing, chose a subset of the above, and had a 50% hit rate with what was wrong with me - this is because he has seen so many patients with CFS that he can distinguish different types.)

    Another question: why did your GP prescribe Amitriptyline? It is prescribed in CFS for patients for their pain and sleep-disorders. And even that is controversial. If as you say your wife suffers only from muscle weakness and fatigue why Amitriptyline? Or was it against depressions? But you say she doesn't smile, so it seems not to work as an antidepressant either. (Or was it because Amitriptyline is very cheap and is mentioned on the one page leaflet about CFS which GPs get?)

    The specialist in Leeds: before you see any specialist with your wife, you should find out who they are and what their view on CFS is. There is a post "How to find a CFS/FM doctor (long and detailed)" on this board, type the title (without the quotation marks) in 'search messages' at the top of the page, and you'll find it. This may help you.

    All this may sound harsh, it's not intended to, on the contrary: I was not properly diagnosed in the UK for over five years of suffering from CFS, partly because I tended to believe what my GPs and the specialists *they* sent me to said. As a result I got a lot worse than I would have, had I seen a specialist early on. This should not happen to your wife!

    With warm regards,
    Susanne


    [This Message was Edited on 11/14/2002]
  17. karen2002

    karen2002 New Member

    It's so very nice to meet such a wonderful, compassionate, helpmate. Miss Hilary is so very fortunate. This will go so far, in helping with her illness!
    Please, understand that there are many different levels of illness. Implying that trying harder will improve ones lot is not realistic. I, too, at the onset of this disorder, was bedridden. There was no way to will myself, to be able to do more. Although, the mind was willing, the body was totally incapable. Thank goodness with therapy--in many different forms, and perhaps just the nature of these disorders, I, today, am functioning better. I cannot definitively claim it was any of the numerous supplements, meds, or just an easing of symptoms. My only claim is that today I am feeling better, and I will not worry about what tommorrow will bring. I am enjoying the here and now.
    I, too, have a supportive family. This is such a blessing. It's not only a blessing, but because of the very nature of the disorders, the stress of poor relationships can be a huge detriment to wellness. You are so on track with what you are doing regarding your wife's care. Your attitude is wonderful!
    Now on to you--In order for you to remain healthy, it is imperative, that you, the caregiver, take time for yourself. You must be able to step away, at times, for your own healing, and stress reduction. Do not fail, in this area, or you will be compromising your health, as well as your wife's.
    Progress in some cases, take minute steps, that we cannot see on a daily basis. With time though, we can look back and see that progress was and is being made. Keep following all leads, see new doctors with new ideas, formulate your own, and try all methods which seem of value. This is truly a quest. Please do keep in touch--there is so much wisdom and support here!
    Hey, what about an inexpensive printer for your computer?
    Hilary, could keep up with posts, support, encouragement, and the wild rants of long-winded people, like myself (wink).
    Give yourself a hefty pat on the back, and Hilary a gentle kiss, those teenagers a huge hug around the neck (hmmm considerate teenagers...you are blessed (just kidding)--and know that we are all pulling for you.
    Karen
    [This Message was Edited on 11/14/2002]
  18. RedB

    RedB New Member

    I skimmed the above responses, so I hope I'm not repeating something that was already said. I'd like to add just a couple pieces of advice from someone who was equally as ill 5 years ago. First, make sure your wife's thyroid gets tested. That sucker can actually kill you eventually, I've seen it several times. Second, Amitriptyline made me want to spend my whole day in bed, it grogged me so much. There are plenty of equivalents out there that respond better for us -- ask her doctor to try her on something else. And third, and most important even though it seems to be the hardest. An Internet friend with FM told me this, and it definitely works, so I'm passing it on. Start walking and slight stretching. By walking I mean maybe two trips across your house, or just to the mailbox, or to the neighbor's house. Just a few steps at a time. I was ready to give up until I tried this. I was in such pain when I tried walking, I wanted to cry, and it basically sucked the breath right out of me, but each time got just a bit easier, and I can walk several miles now. I owe my friend a lot. As for stretching, this is a hard one. I'm sorry to say that I do not do the usual stretching that most FM patients do. I end up feeling worse. However, I do do some things that are just kind of normal. I wake up at the edge of the bed and give one of those big yawn stretches that I used to do when I had to get up early to get to school. But I REALLY overextend the stretch so that I feel it in every fiber of my body. And, if I feel as if I can't touch my toes because of stiffness, then I just test it. Each time you get a bit closer. The trick to all of this is to NOT overdo any of it. If you can't touch your toes, then just bend down a bit. It will help anyway. Walking, however, has been my savior. That naturally stretches many parts of your body, and you don't have to hurt badly to do it. The first few times are the worst, but it will improve over time. Luckily, I have a wonderful white German Shepherd dog who loves walking, so that is always an encouragement to get going.

    The problem with many of us when we first get really sick is that we feel so awful we automatically start laying down a lot, because that is just what you DO when you are sick. Once you realize that you are not dying from your illness, and you realize that you WILL have pain when you do things, but you're stuck with it, it starts to make sense to start moving around. I actually have the reverse problem now, in that if I STOP moving around, my pain gets so much worse. I can actually keep myself a bit better if I just don't sit around. It's pretty scrary knowing that I have to keep moving, because I'm 53 and worry about something happening to me physically to stop me from moving, and the pain all getting so much worse. But worrying about it does no good, so I just keep going.

    And one more thing, Andrew. Good for you! This illness is sometimes so much harder on the spouses. Let your wife know that Kathy says that the longer she stays immobile, the more she will keep tightening up, and the worse she will feel. And, if she's not yet ready to get up and moving, tell her to try a few arm and leg lifts right there in bed. That works, too. The major pain will always be with her, but she can help herself get rid of some of the pain that has been stiffening inside her since she's been bedridden. You know how hard it is to stand up after you've been riding in a car for lots of hours? And how everything aches? A lot of her achiness is just like that right now. Once she can cut down on some of that, then it's easier to deal with that darn big stuff that's still left. Good luck to both of you. I'm from Michigan, and I'd love to hear from you or your wife about how she is doing. I'm at: beldorth@triton.net
  19. LindaGa

    LindaGa New Member

    I understand what your wife is feeling and not able to get out of bed and get on with her life.Years ago I was so bedridden with fatique,muscell spasms from H***,and my left side did not work at all,so I could not walk.Thank God I have a wonderful husband who has stood beside me as I've put him throught 36 years of my being ill with one thing or another 4 months ago the world tumbled down once again with so much pain, and not being able to walk that it was terrible.I'M also really depressed to the point of sucide at times because of the pain and my life passing me by.I would cry all the time,feel usless,and I could not be happy even though I had a loving husband.He's really a smartman he moved me to a window,and finally purchased a wheelchair so I could go with him on short trips out in the world.He also got me a walker for in the house.I get up a little at a time and try and walk a few steps each day.I guess what i'm trying to say is you need to address your wifes obvious depression for her to get better and also sleep that robs us of our energy if we dont.Then maybe the muscels will relax.Good luck to you both,for I know what staying in four walls can do to you emotionally.And as for the smileing thats awfully hard to do under great depression,I've been in mental hospitals because of this and once it was controlled I could laugh again and smile like my old self. Please excuse the spelling mistakes the memory thing in me is really bad.Or maybe old age is creeping up on me i'm 55. Take care of you both Please and God Speed. LindaGa
    [This Message was Edited on 11/14/2002]