This is such a helpless feeling. My wife has had "issues" for the 10 years that I've known her. She was known as the Hypochondriac and drug seeker and has finally been diagnosed in June. I knew she wasn't seeking drugs as she faithfully went by the prescriptions directions but the ER treats her as such. Until this year her joints weren't hurting so bad. She just had auto immune issues mainly and "back aches". Now she's in bad shape, trying Enbral but can't keep well enough for a consistent dosing. Always something with Asthma, sore throat, sinus infection, etc... She's starting to wake up yelling in pain. This is just so hard to stand by and try to support her. I say try because I can't just rub her back (hurts too much) or give her a foot massage. All I can do is truly listen while she vents which I know is very important. Venting is getting to the point of "... can't live with this future I'm facing..." type of dark night conversations. I supportingly listen to this with out my input... but I am worried about suicide but sometimes I agree with her and feel guilty as hell for it but she's brutally honest and puts it in a way that I feel I'd be thinking the same thing if I were in her shoes. She has a "good doctor" and goes to session weekly. She's not yet gave me any indication of true plans or follow through. I just let her talk. This is so difficult but at the same time it is rewarding on the good days. She is so grateful that I'm there for her but I don't dare tell her it tears me up inside seeing her in so much pain and (do I dare say) worse... true blindingly white frustration. She doesn't need my burdens during this time and I don't want to add to her frustration through guilt. Catch 22 on the caregiver's side... Just sayin'. I'm not looking for anything special by writing this out. Just wanted to get it out to someone (anyone).
Friends and family just want her to "get out and take a walk", "just go to lunch" or "oh, you're being overreactive to your pain" and stuff. More caretaker frustrations as I (and the few who care enough to research and understand) am looked on as an enabler because for years she's had pain and sickness and now there's an "excuse". I want to say it's a diagnosis for what's been going on with her all these years. They just don't (care to) understand the idea of good days and bad days with this disease. You know, how doing "normal" stuff on good days seem to make the bad days worse.
Hi, firstly I can only begin to imagine what it must be like for your wife, I only went two months before I got a diagnosis. But the main thing I wanted to say is people don’t understand it, but the fact that there is one person that does is a great help! So don’t feel helpless, I’m sure you are helping your wife a great deal more than you yet realise.
I'm so sorry your wife has suffered for so long. It sounds like you are doing a great job just being there and supporting her. I am sure it means a great deal to her. She's very lucky to have that type of support. As for others wanting her to "just go to lunch" or "just for a walk"....they don't get it and likely never will. One thing I have learned in coping with this disease is that people not only can't understand but most won't even really try. People hear the word Arthritis and think they understand but they don't.
I too went a number of years without a diagnoses. The last year has been the worst and I found myself spending the summer doing nothing because I was overwhelmed with pain in my hands, even while I just sat and did nothing.
I know the depression and also dealing with the pain is overwhelming. I am glad your wife has a doctor to see regularly. I had to find one myself and don't expect I'd be doing as well as I am now without that help.
I'm glad you're here. Hang in there and vent anytime. There is always a ear to listen here. I can't imagine how difficult it is for you.
It’s rough when you’re newly diagnosed after years of mysterious suffering. I had symptoms and problems for at least fifteen years, and I know the toll it takes. My GP thought I was a weak-willed complaining whinger, and a drug seeker. (She didn’t give. But she does now!) I felt like there was something wrong with me (no kidding!) because I just couldn’t work as long or as quickly, or do as much physical activity, as my colleagues and my friends. And yet my limitations were always attributed to the “usual suspects” (age, weight, menopause, lack of exercise etc). My own private explanation in my head was that I was weak-willed and lazy. Life was an uphill battle, and it took it out of me physically and mentally. I’m still not over the mental part.
But here’s the thing: along with a solid diagnosis, comes an opportunity for treatment as well as mental recovery. That’s where you and your wife are so lucky, as am I. It may have taken a while, but there’s now hope of finding the right treatment that will give her – and you – a much improved quality of life. I admire you for standing by her, and for coming here to let it out. We all need that, and this is a good place to seek understanding. Neither of you has had an easy road. But now, at least, you know what you are dealing with, the enemy has a name, and there is the prospect of putting some of that, at least, behind you.
Sadly, there are no quick fixes, no miracle cures that will give instant results. Six months after starting Enbrel (with a couple of pauses during the summer), I’m much better, but still suffering some symptoms. But at least now I know what I’m dealing with. It has a name. I know that my limitations are because of my disease, not because of personal weakness or shortcomings. (And it helps me to write this. Like I say I’m still not over the mental part.)
I don’t think there’s much you can do about the onlookers who just don’t “get it”, except to explain clearly that the problem is, and carry on in the best way that you and your wife know how. Some time ago, there was a thread on how to explain this wretched disease to the bystanders. I’ll see whether I can dredge it up.
Meanwhile, I hope your wife (or the two of you) can find some counselling help. You’re lucky to have a good doctor. And I’m glad you’ve found us here. Unload on us whenever you need to!
This is a really tough situation to be in. You're doing a great job helping her out. You said she "goes to session weekly". Are you speaking about counseling? If she's not receiving therapy, she needs to be in therapy right now! Suicidal ideations need to be taken seriously, no matter what the source.
You need support as well. You are smart enough to recognize that you should not be getting it through your wife. There are many local and online caretaker support groups. Find one! Do some reading as well, regarding caretaking issues (sorry no recommendations). It won't change your situation with your wife, but it will change how you are able to handle it.
Keep reaching out for support. Whether it is here, through a caretakers support group, wherever. . . Get support!
hello there I don't know you but read your post I want to say I admire you reason is because you are still there beside your wife for all these years that is unconditional love as for me I was married twice the first time was for 25 years and the second was only for about 2 They could not handle what was happening to me but did not want to understand it cause my life was changing a few things I loved to do I could not do anymore and in there eyes there life was going to also and they chose not to let that happen for example I love ice fishing but last year I could not go at all that was one of the things we did together but he could still go the hardest part for me was I took my wedding vows seriously and to have them both tell me they could not handle it was very painful so hang in there and let others know that until they read about it and listening to the facts about this horrible diease they should be ashamed of themselves also I think your wife needs to be on a depression med and maybe seek some help hope things get better this diease is like being on a roller coaster ride again take it from a total stranger I admire you god bless you both
First, I am sorry that you and your wife have to deal with these shitty health issues. NO ONE wants this in their lives. It's awful in different ways for both the patient, and the spouse / caregiver.
I've been with my spouse for 22 yrs, and I've had PsA and related health issues since before we met. One thing that I've found very helpful, is that I have a bunch of friends, online groups, and a local support group, that I count on for emotional support, leaving my husband to deal mainly with physical things (making meals, driving me places, taking care of the kids, etc). Of course when things are at their worst, and I don't want to go on, he is there for me and reminds me that I matter to people and I should keep going. If you and your wife do not have outside support...get some.
Health issues go in waves.... you have to look at this as a marathon, not a sprint. Things may be awful now, but with treatment, you may have a GREAT year next year... then other bad one, then 2 good ones.... you just never know. Live for the good times, and power through the bad.
Wow, Thank you all for all the suggestions and supporting words. I really feel it here. Correct, I do/have not thought about caregiver groups. Will look into this more. True, the "good doctor" is her psychologist who she's seen weekly for 3 years now. She's self admitted to an in patient mental institution 3 years ago due to suicidal ideation and her counseling is now like a religion to her including anxiety and anti-depression meds through a different psychiatrist. This seems to be to simply counter all the negative psychology that all the pain meds give her.
You're right, friends are good. Her friends are tired though and do not care about the new diagnosis nor care to learn about her diagnosis. They're all just waiting for her to get better and don't come visit for the last 9 months, since she's quit working. She's been in our house and goes out (groceries, errands that I usually do) on the few good days she gets. I try to get away from work when I can to do nothing more than "be there" for her. I've even contemplated quitting work to help but just not in a place to be able to. Really though work is a good place to go (escape?) for me too so there is that.
The thing right now is, she's beginning to talk about active euthanasia. I don't know that she's talked to her psyc about it. While it's not a legal option in our state it is the next state over which she doesn't know yet. It's weird, crazy, overall nuts to me that she's even speaking of this but a small part of me understands completely having seen what she's gone through. I would never tell her this. I just listen and try to reiterate that she's needed by me and my step son (her 13 year old son) to help us with remembering appointments and be there for him... and stuff, even though I don't want to guilt her into living but whatever it takes, right? The remembering appointments idea isn't really needed but I make it a point to have her help me remember so that she has something to contribute during this time as she can't keep house like she used to...
This is all so surreal and just overwhelming now that I write it all out. I feel conflicted though because I feel like I might be dumping on people who are in the same position as my wife and it might be counter productive for you. If that is the case please tell me and I'll stop. Meanwhile, I am now in search of a caregiver group and psychologist for myself. Thank you so much for your words and suggestions.
Thank you Lynn. First, "Enable" - I don't understand this.
You're right, I will need to talk to him soon. And you're right, there are underlying psych issues and has been ever since primary school and probably before. Adopted, verbal (and maybe physical) abuse from parents. Isolation while a child, mom who wanted a friend and so adopted. They think the way they currently talk to her is normal (racial slurs while still saying "I love you" and stuff), no family to speak of except parents and she's tried to lessen the relationship. And more with a very physically and verbally abusive first husband who is the father of our child and is now passed on (drug overdose) when child was 4 yrs old. I'm dad now. All of this didn't come out until well into our marriage and I just thought it's a new normal back then to help her get the help to deal with these issues... And now I'm afraid we are going into a new normal... again. The pain is excruciating, she feels so alone and sees no future. And has felt that before the diagnosis and her psych knows this for sure.
When she got out of the in patient this last time 2 years ago her psychologist told her she was the poster child of the clinic. That she owned her illness and did great... 2 weeks after she got out. Like you I think it is fishy but she "loves" the way he works - loosely termed for this discussion - and defends him so there's no way for me to suggest anyone different.
Interesting thoughts, I have a lot to learn me thinks.
I believe, as a moderator I need to step in here. CA-Lynn I am cautioning you about throwing around "psych" words. We, even the moderators, Doctors and nurses, etc, are not here to label, diagnose, or treat others on this site. You are over stepping here. Transference and length of treatment needs to be left to the professionals who treat the patient. We are not here to do this. We are here to locate information and support and NOT to be experts either with our experience or education. Don't do it again or we will need to look at censoring you. Thank you.
Jim, this is tough stuff. Your wife is lucky to have you. She is also lucky to have a relationship with a good psych. I am pretty fluent in both Psycho-babble and med speak. I have no advice but to be you and just love you wife as much as you can when you can. The separation of the three (at least) things that your wife has going on is blurry at best. As a scientist, it drives me nuts. The same neuropathways that transmit pain, transmit emotion and are effected by disease. Suddenly it all becomes the same. Treating the PsA may help, and it may not it will be the same with every part of her being and condition. Right now pain is the issue. In conjunctuion with the professionals treating her perhaps it is time to be involved in a multidisciplinary pain management program. where all parts are treated. Whether her pain comes from inflammation, or a broken neuro system is irrelevant. She is in severe pain.
I lifted this but its absolutley true "The convergence of depression and pain is reflected in the circuitry of the nervous system. In the experience of pain, communication between body and brain goes both ways. Normally, the brain diverts signals of physical discomfort so that we can concentrate on the external world. When this shutoff mechanism is impaired, physical sensations, including pain, are more likely to become the center of attention. Brain pathways that handle the reception of pain signals, including the seat of emotions in the limbic region, use some of the same neurotransmitters involved in the regulation of mood, especially serotonin and norepinephrine. When regulation fails, pain is intensified along with sadness, hopelessness, and anxiety. And chronic pain, like chronic depression, can alter the functioning of the nervous system and perpetuate itself"
Pain rehab is possible. With pain doctors, psychologists, PTs, OTs, etc a lot of progress can be made with all of these folks working together. I'm not talking pill mill pain management centers.
And for god sake if someone tells you something isn't working for someone because they have been at it for 2 years make sure it isn't someone who has been taking meds for their disease for 20 years. Apparently those meds don't work either and she should quit tasking them. A broken psyche just like a broken body doesn't fix itself quickly.
Your wife admitted herself because of severe suicidal thoughts. Shes alive and seeking answers. Apparently SOMETHING is working...............
Very interesting tntlamb. Thank you very much. This is a place to start for my understanding. I will dig further. I've gotten a hints over the years that a lot of physical issues in the past seemed more painful to her than the Dr expect. Some even resulting in unnecessary surgeries... for instance an emergency appendectomy based on description and presentation in the ER after which the surgeon admittedly told us the appendix is fine and she should not have had the surgery. One Dr (different ailment) actually told her some very similar things to what you've said... only to have her "accuse" him with saying the pain is all in her head. I held fast to that and begged her to at least explore this with her psychologist... with no follow up and a lot of argument I've succumbed... I am at the "just be a good partner and listen" stage. Thank you all for helping with this. This is my first time I've really involved myself in trusting a forum of unknown people outside of work forums.
Jim, you are working so hard on your wife’s and your own behalf. Just keep doing what you are doing: this is a safe place to vent and toss out ideas. We don’t pretend to be professional counsellors or therapists or diagnosticians, but we are a caring group of people with some common experiences who can listen and offer a bit of support when needed. Please don’t worry too much about being a “downer” for the rest of us here. This, too, is a reality of the disease.
Near the top of the page, if you click on the “Discussion” tab, you will see “Crisis Talk Line”. Please remember that it’s there: these are people who are trained to listen to people going through very difficult personal situations. The good thing is that they are available 24/7.
As Lamb said, be yourself,and give her as much loving care as you can. And look after yourself: this, too, is a way of caring for your wife.
Finally, the fact that you now have a diagnosis does make things better. Unfortunately, there are no magic bullets or miracle cures for us, but there is now hope, in time, for an improved quality of life.
Hyperalgesia is when something hurts more than it should. More than one appendix has been sacrificed. Most often it is a result of too much pain meds. Either doae or time. Its very commonn with women and arthritis. There is a direct commection between hyperanalgesia an tnf alpha. Here is a quick blurb from a text book.
You and your wife are going through so much. If not already mentioned, then ask your wife to read these comments so she can maybe see that she is not alone, there is a whole bunch of us here that have felt relief that we are not alone. I think psychological damage is done sometimes in this situation because there is no 'label' for the pain and suffering for people in this position ( I know I felt that way at one time) but the label (for me) is unimportant. What matters is that the label guides the medics to prescribe medicine that helps (after a while) to aleviate the pain. I hope this is the case with your wife, I really do, and that the medications bring her pain level down, and that the knock on effect improves the position that you find yourself in.
My heart goes out to you guys, I wish you well and some happy days in the future
