Relationship Issues With Husband- Irrational Fears???

[jenglynn]

Hi.. Warning.. this will be long as most of my posts are... kind of complicated and a lot to explain so thank each of you who make it through to the end Or even those of you who make the attempt!!

Debated about putting this on this board but I need some advice with my husband. I hope someone can help because I am at a loss! Quick update of my condition for those who don't know- was hospitalized for the most part from Thanksgiving thru New Year- first at local hospital with no autonomic expertise but admitted due to head injury and concussion #6 after syncope ( had concussion #5 10 days prior and 4 of them within the last couple of months so preventing head injury is imperative at this point- assessment shows cognitive dysfunction after last concussion so have further testing upcoming-- have serious OH with LOTS of syncope- many x daily if I were walk around normally) Then at Mayo for a couple weeks and diagnosed with unspecified autoimmune deficiency disorder, EDS, and autonomic neuropathy and failure among some other things as well. Still no major answers for me, even Mayo considers me a "medical enigma"- in their words in my discharge papers (thanks a LOT!) Then back to local hospital for another couple weeks in inpatient rehab. Have been home for a little under 2 weeks. Pretty much bedridden, wheelchair, or crawling, scooting where I need to go around the house- still have lots of OH and syncope and tachycardia. Tried IVIG beginning while inpatient at Mayo and first 2 weeks after I got back to my hometime hospital- and going through rejection right now and feel as if I took 10 giant steps backward since I went to Mayo because of dealing with IVIG rejection. (Initially we thought severe allergic reaction due to one bad reaction and then near anaphylactic- after blood tests it shows that body is in full rejection at this point) So basically, that is where I am right now. Initial symptoms of this flare began in April but did not get completely disabling until early Oct. so very rapid decline. Believe this is lifelong condition for all DX but this is worse flare by far ever. Onto to my hubby...

He is so completely overprotective and driving me crazy. He won't let me do ANYTHING for myself. I am used to being so independent and have functioned with the pain and symptoms of these conditions for my whole life before being recently diagnosed. I dealt with it.. granted it is debilitating this time, but in the past I always was very self reliant. He has these fears that I am going to be constantly in the hospital. He talks about it ALL the time. He won't make plans to look for a job (he was fired the second day I was at Mayo because he had missed too much time at work- he is an engineer and they have deadlines and projects have to be finished and he wasn't there..) because he thinks I am going to be constantly in the hospital and how can he work, handle the kids (we have SIX!) AND deal with my "severe" illnesses and hospitalizations he seems to think I will have after starting a new job. I have told him so many times... These are chronic illnesses that should not cause frequent hospitalization. I am in the process of looking for help at home so he doesn't have to do so much (to add to the stress... his mother was JUST diagnosed with dementia and she is a diabetic w/ out of control blood sugar and we just had to put her in a nursing home until we can find proper placement for her- he is an only child so he is all she has- his Dad died when he was 13-). I can crawl into the restroom and use it. Unfortunately, due to some system problems (hate admitting to this) I have a lot of bladder issues- some full loss of bladder control, leaking, or complete retention. My body doesn't believe in Happy Mediums I do have to use Depends for now because it is so unpredictable. I can scoot around for the most part and do okay but raises my HR quite a bit... we live in a tri-level house so the stairs can be a problem but I can scoot up and down them infrequently.. but I try to do as much for myself as possible.

Even at rehab, they discharged me saying that they were amazed at my mobility (I have EDS and pretty hypermobile but luckily I am able to move quickly for transfers, etc) and my strength especially considering how much time I have to spend in bed. No atrohpy. I have this perfectly healthy body physically except for the fact that my brain can't control it. They told him that there was nothing more they could do for me. I think he expected me to come home cured. Yet, after IVIG rejection, I come home worse. He is in constant fear that I am going to die. I try and try to tell him that I am NOT going to die. (Well... of course I WILL die, but hopefully no time soon!!!!) These conditions typically do not kill people. Of course, we are ALL doing to die, I say, but in all likelihood I won't die from this. I may be disabled, but I am not terminal. But HiS fears are irrational in my opinion but very real to him. He reads and researches too... goes to my appts. so I am not sure where he gets these ideas. He is obsessed with my weight loss (30 lbs in last few months). Obsessed that I don't have an appetite and hardly eat. Sees me "wasting away" in his terms and it terrifies him.

I feel like I have already given up so much of my life. Freedom, dignity, health (what little I had), mobility, independence, ability to help others, ability to REALLY be a mother and a wife... I could go on and on. I can hardly leave the house. I can't drive, may never again. Can hardly sit in my wheelchair for more than an hour without having to lie down. My quality of life has drastically changed. I TRY to keep a positive attitude but he makes it hard. He has me dead and buried it seems. I have lost so much, and I've lost the marriage that made me so happy. Now it is total caretaker/patient mode. He is going to counseling because he is really at the end of his sanity between losing his job, his mom with dementia and his wife who used to do EVERYTHING in spite of my issues who can now do basically NOTHING. Well, without an episode. I get that he is going through a LOT. But so am I. How can I make him understand, or can I, that he has to let me manage this myself and not obsess so much????? Any advice for me? For HIM? I know his position isn't easy either. Lots of pressure and he's starting to buckle. How can we get through this with our marriage intact? I feel that we are both at such a high stress level and looking at the world from such different perspectives right now. Health worries, time worries, elder parent worries, kid worries, financial worries, you name it. But I feel like it takes every ounce of energy I have to get myself through the day, to try to heal, try to keep strong and keep faith, and try to be the best debilitated mom I can be... everything I do is a struggle and a fight. I can't fight my own battle and fight him too. I just need his support, not his fears and judgements. But I don't think he has the support to give. So that is where we are now and it is not a good place to be.

Thanks for reading if you made it this far.... Jen

[anna]

Possibly it is in your husbands personality, to be the carer, I think maybe your hubby is just being himself! ( I know I do not know your husband so this is just going from what you have written and from what I know of people). If that is the case then this instinct may have gone into overdrive since you got more poorly, does that make sense?! Did your husband have any signs of mild OCD's since you have known him? If so this sort of situation he is can make OCD's so much worse, thus lead to many irrational fears, but CBT (cognitive behaviour therapy) can work well in low level OCDers. If that is not an issue then your hubby might just be having a bit of post traumatic stress which again can be dealt with well with the right type of therapy.

Most of what you have written leads me to think that you are a tad like me!! oh poor you ha ha!!! I am a do do do person and hate help from other people, I always need to be in able to fix things myself!

Some time back we had someone in doing an assessment for services on my son that has Autism as well as the EDS and ANS stuff, on the report the health professional wrote " mum also has many of the daily struggles that her son faces and in her own right is eligible for support but she has chosen to focus on her children and wants to sort them out first". I think maybe you are like that as well!

I will write more on this soon just got to go sort out a poorly son, he's just been sick!!! he we go again!!

[corina]

jen, i really feel for you and your husband. my husband and i have been there too. it's difficult to find the right words as english is not my first language so i'll try my very very best.

your husband may not be able to give you the emotional support you need right now as there is so much going on, so counseling is def what he needs to help him get things in some kind of order. what helped me and my husband was sit down and talk and figure out which of all the responsibilities we had could be mine and which responsibilities my husband needed to take on.

i could do lots of things like making arrangements for the kids (talking on the phone with friends to help get them at their appointments etc), managing our household (telling what needed to be done and when and by whom, hiring a cleaning lady, making lists for grocerie shopping etc), keeping an agenda for all of the family so that i allways new who needed to be where, when and at what time, and a few more things that i can't remember right now. i could fold laundry, told the kids when to clean their rooms etc.

making these kind of arrangements made it clear what was expected from my husband and the kids (and me of course) which made it easier for all of us. my husband and kids knew exactly what to do and it gave me the kind of roll in our household that made me feel important and needed.

at times there is so much stress going on that people have difficulty supporting as they might feel like drowning themselves. that goes for both patient and caregiver. i'm sure your husband loves you but feels overwhelmed by everything going on which makes it even more difficult for him to support you. he might want you to stay close to you, making sure nothing will happen to you, so that he doesn't have to worry even more about you. i also know how difficult it is to change from being an active working, sporting mother to a mostly bed/homebound patient feeling worthless to her family.

try to talk to eachother and try to understand eachother and express what you want/need from eachother to make it easier on all of you.

sending warm thoughts,

corina

[Clairefmartin]

I have nothing better to add - I think both corina and anna had great suggestions/explanations regarding your husbands reaction to the situation. I did want to ask how your husband was fired? What about the Family Medical Leave Act? You can not be fired if you, a spouse, or child is sick - employers are required by law to keep the position open and available - I believe no pay is required, but they can't fire you for a year or 100 days missed (I can't remember). Please look into this - they had no right to fire him BY LAW for missing work because you are sick. I went through this with my husbands work as well.

Good luck and I hope you get some treatment soon, I have been reading your posts and I can't believe Mayo didn't do more. Have you thought of maybe trying another center like Vanderbilt?

Claire

[potsgirl]

I just wanted to add to the great post Corina wrote that counseling would probably be very good for not just your husband, but for you, too. Either separately or together. When David and I were going through some of the same type of struggles, we went to a counselor together, and we found that it worked very well for us.

Also, Claire makes some great points, as does Anna. I would think about checking into the legality of the company that fired your husband, if he wants his job back there.

My heart goes out to you. Good luck, and let us know how things go.

[songcanary]

I am stunned. I realize you don't feel lucky but in some respects you are. When I was at my worst, my husband actually got on a plane and traveled cross country---twice. I was left on the sofa in my bathrobe alone wondering if I would even wake up the next day.

I would have given anything for my husband to dote on me and do everything for me. But no, I had to drag my crippled self around the house just to do the very basics; just me and the dog.

I do understand your frustration because I am a 'can-do' person also. But please remember to thank your lucky stars that someone not only cares, but acts on it, too. BTW, hubby gets it now. It was a nightmare before that.

[HopeSprings]

Kinda having the same reaction as Song Canary. I'd like to see a little more worry and concern coming from my husband. I feel like I often have to remind him that I'm not well. At the same time, if all your husband is doing is worrying and not supporting at all - that's not good. Just keep talking to him - let him know that there are things you can still do and want to do and that this constant mothering is making you feel worse emotionally. It's great that he's going to counseling - he sounds like a good guy.

[gertie]

Jen, When I started reading your post I thought I had written it until you came to the part about your DH. I have

brain injuries related to falls & know how scarey it is. My husband is opposite to yours. He doesn't get excited

about much of anything. He did get a little upset the first time he saw me hit the floor, he thought I was dead. The

only time he knows how bad I am is when I pass out & I ask him to help me to the bed . Most of the time I have been

alone during my worst episodes. I never know how long I have been passed out in the floor. After 25 years, I think

my DH is just tired of hearing it. I try not to talk about my illness & all the symptoms that go with it. He does gladly take

me to the dr appt & does grocery shopping. My autonomic nervous system had shut down & I couldn't function either.

My brain didn't work correctly not any bodily function. I was started on Neurontin which helped a lot.

Your DH is probably just overwhelmed, worried about you & wondering how he is going to cope. An admirable trait.

Are your children old enough to help? Maybe a relative. Are you on any medications? I wish I had some answers

for you. Best of luck!

[janiedelite]

It sounds like after all that your body has put you through these past two months, that your hubby is really afraid of losing you. I've watched my husband and my dad (whose wife has carcinoid syndrome) struggle with feeling helpless as their spouses deal with complex diseases. Both guys admit that they would give ANYTHING to be able to "fix" us. Not being able to do so has put my dad in and out of depression. Before I'd been tested to rule out major underlying diseases, my husband would have dreams that I was going to die. When I'm not feeling well, he will give suggestions (drink more, salt more, rest more, etc) and I'll tell him I've done all of this. At hearing this, he used to get grumpy and ask "well, what do you want me to do then?" It has been the hardest thing in the world for him to see me when I'm really ill and just to sit with me through it and wait it out. And I've never dealt with the severity of illness that you have lately.

I think that after watching me endure good and bad days over the last 5 years, he's learned to care for himself better. Usually it means he keeps himself busy watching TV or doing his doctoral homework so he can keep his mind off of not being able to fix me. My dad has friends, including my hubby, who he shares his feelings with occasionally. We've all been in counseling at various times as well.

I think counseling is a great idea, and if you aren't able to attend with your hubby, perhaps you can attend via speaker phone occasionally? He's really had to endure a lot of loss lately.

After watching my mom come out of remission for cancer, and then getting sick myself, I think that it can be actually more difficult for the patient's loved ones than it can be at times for the patient. The fear of the unknown can be overwhelming. Many times my hubby and dad have said they'd take our pain for us in a heartbeat. (But I laugh at that and tell my hubby that I know how bad he is at being a patient so no thanks! ) Hopefully your hubby can come up with some concrete ways to help himself cope better, and will start allowing himself to see outside of your illness (and his mom's situation) and take care of himself a bit.

[jenglynn]

Thank you all for the wonderful advice, thoughts and suggestions. One of the reasons I hesitated about posting this topic is because I knew I may come across sounding a little ungrateful because I know how many struggle with family members to take their condition seriously, let alone be caring and concerned. My main concern is how this condition has debilitated both of us. His fear of losing me is always there. I have been so sick lately I haven't been able to do much at all... where before even while bedridden I was able to do the lists, the chores, menus, etc. Since I went through the IVIG rejection, I haven't been able to do much at all.

I know this is just such a difficult time for us to get through. I think he is going through a lot of depression and almost reached a point of shut down. So he did start the counseling and it is intensive counseling- I think it is called intensive outpatient. He goes 5 hours a day. He has always had depression and anxiety- and was once disabled for a year because of severe depression about 12 years ago. So the depression isn't new to him. Nor the anxiety. He has coped very well for a long time but my illness in combination with his mother's dementia diagnosis. Things have spiraled really rapidly with my illness.. like I said I've always had it I truly believe. And to add a little MORE history... I started the year of 2011 in the hospital with acute appendicitis so I was out of work for a while for that- then 8 weeks after that after being back to work for 2 weeks I dislocated my knee and needed yet another surgery and was out of work another 6 weeks... Well.. My FIRST day back to work after that surgery was my FIRST syncope spell of this "flare" (early April). I had NO idea what was wrong with me but it started with the dizziness, syncope, then shortness of breath, I wore a Holter Monitor for 30 days until Mid-May ... well I wasn't diagnosed with anything but anxiety and low iron until I went to see a hemotologist in late August to treat my iron. By this time I was SOOO sick, I could hardly catch my breath, was exhausted ALL the time (still trying to work) still having dizziness and syncope. My doctor decided maybe iron infusions would help. The Hemotologist said that he could see I was chronically sick due to weight loss and my pallor but didn't attribute all to anemia. My hemoglobin was low but not dangerously low. So he started worrying about a blood clot in my lung and other things... So he listened to my heart- normal- had me stand up and walk a little bit and much to his surprise my heart rate more than doubled. He asked if I had any heart tests done... I said an EKG which was normal and a Holter which was also normal. So he pulls up my chart and looks at my results and tells me with a look of shock that in over 4 months no one had read my Holter results. So he opened it up and it showed several episodes of sinus tachycarida- many daily episodes in which I had recorded symptoms. SOOOO.... I progressed so much worse during those months that it was pretty upsetting to us that such a key test had been glossed over. So, bottom line, it was a very long and exhausting year for me medically and for him as a caretaker. So I began the year 2011 in the hospital and ended the year in the same hospital.

As for his job, he was more of an independent contractor working with two other guys and they bid on contracts and met deadlines so they basically said if he couldn't be at work then he wouldn't be getting his share of the contract. It was upsetting and he had put in a lot of hours already on the job and the way it was done seemed heartless right before Christmas while I was in the hospital but a deadline is a deadline... and we understand the way that it works as a building is going up. SO FMLA was never an option.

Another question, in your opinions... because while I am not new to the "condition"... I've had it mildly my whole life... but new to the severity and diagnosis that I have... what are the realities of having to be hospitalized? Is it something that I should expect to happen with frequency like he expects or should it be a rare occurance like I expect?

Thank you!!!!! Your thoughts and advice is so appreciated!!

[gertie]

You had a bad year, hopefully things will get better. Because of my experience with the medical community, I don't

have any advice. Are you better after you've been hospitalized? What do they do for you that makes you feel better?

I'm just curious if any of the treatment you've had have helped you.

[anaphylaxing]

I'm in the opposite realm too like many have added.

Mine was also fired for missing work; didn't realize there were ways around that

Hang in there; it sounds like you are being VERY strong! I need to be more like you!

I really hope you feel better soon

[Katybug]

Hi Jen,

I am not married so it is definitely not my place to give that kind of advice. But, I was thinking if you might be able to have an au pair or live in help if he were to go back to work (I obviously don't know if finances would allow). That might allow him to feel more at ease with your illness at this point. Also, you mentioned in a recent post and this one about the stairs in your home being a challenge. Is there a possibility of getting one of the stair lifts that is a chair that takes you up and down the steps? That might make it easier and safer for you to get around the house. Hope you two are able to work through this and be stronger for it.

Katie

[icesktr189]

Ive been on both ends.. I came down with this at 18 and my boyfriend at the time was 19...t osay at the least he was not emotionally prepared for it and just would sit there and look at me when i would cry and walk out and tell me that there was nothing wrong with me and I just "needed to calm down". It hurt pretty bad and I was afraid of going to sleep in fear I would never wake up.

Now my fiance is very supportive, but I can see it takes a toll on him. However, I know he is in it for the long run, so we have made compromises. You need to comfort your husband as much as you can because he too if going through this right along with you.

Trust me is it MUCH better to have someone who cares, than someone who doesnt, as I am sure you realize

Hope that you get things figured out soon!

[jenglynn]

As for our stairs, I struggle, but I make it. I crawl/scoot up and down. We have a basement bedroom but I can't shower at all and have to bathe very quicklly. So we have decided to switch rooms with our girls... they will move down to our basement and we will move our bedroom to the top level where the full bathroom is. So in order for me to get the bathroom- no steps. In order to get to our living area only one flight vs. two. This should help a lot.

My absolute standing limit at this point is no more than 30 seconds. Major BP drop and high tachy. Even sitting I have really severe shortness of breath, tachy and dizziness. Reclined is my only reprieve but NOW all of a sudden I have brachycardia... so when I am lying down my HR is in the 30's-50's which is new within the last two weeks. I have an appt. tomorrow with a group called Wisconsin Cares and they are coming in to assess my needs for a caregiver, get my disability paperwork all filled out and give me all the resources possible for someone who is in my position. I am not sure what this entails but someone referred her to me (I had never even heard of them- they called me out of the blue to offer to help) and she said there is a LOT of help available (even stuff like housework, nursing, shopping, stuff like that) and it is all income based. It is HARD to accept assistance of any kind for me, let alone government, but I feel like our family is really in crisis mode right now and need any help we can get. I have been in denial for a while about how sick I am. But it is becoming painfully obvious to me that this isn't going away anytime soon. Especially while I am dealing with the IVIG rejection. My BP is all over the place, as is my heart rate. Bladder problems, incontinence AND retention, low hemoglobin, red blood cells, high white blood count, kidney function has been affected, low almost non existent TSH (hypertension), lots of different issues which I am fully expecting/hoping/praying that will gradually normalize. I just got a new CBC today so I am hopeful for better numbers!!!

I have been on treatment. I take Midodrine, florinef, anti anxiety meds, salt tablets, STRONG compression and binder, lots of water and gatorade. After being at Mayo, they tried the IVIG which failed miserably as stated and now can't try new treatment of any sort until IVIG is out of my system which is weeks and I will feel the side effects and rejection the whole time. Fun. I go back to Mayo next month for a bladder function test and then back to neuro there for further treatment options they are putting together in March once the IVIG has gone away. They also tried Mestonin which I did not tolerate at ALL. Almost have me a stroke as well as horrible side effects so will NEVER take that again. And yesterday, a whole new symptom came along... uncontrollable leg twictching... as in my ENTIRE leg will twitch violently and I can't do anything to stop or control it. It comes and goes, unpredictably. It last several minutes. It is a pretty scary symptom to me. It happened today during my appt. with my general doctor and she was very alarmed at the intensity of violence of the twitching. Add that to the list. One more part of my body I can't control.

I am hoping that after I meet with Wisconsin Cares and I find out more about resources to help me maybe it will ease his mind. But his fear (in my mind irrational but in his mind not) that I am going to die is at times overwhelming to him. This disease doesn't kill people, right? I have never heard of it doing so unless from a devastating syncopal event and that is why I am not walking unassisted and always have help getting in and out while bathing. Like I said initially, I feel like I have already given up so much of my life and while I know I do not have a "normal" disease, I am still a "normal" woman, devastated to not be doing my job as a mother and a wife, at least the way I used to. And it makes me feel even worse that he is living in this constant state of panic and can hardly function because he has watched me deterioriate so fast before his eyes. I agree with "Thankful" sometimes this whole situation can be harder for the caregiver. They cannot control anything, they can't feel what we feel and they are the ones who have to watch us faint, grow weaker, more disabled, right before our eyes. I realize how much pain it must put him through to watch me have so many syncopal episodes and how helpless he must feel.

I spoke to my mom this evening who is visiting for the week and she said that there are a couple of things she has observed. 1) I expect him to handle everything the way I handled everything- which isn't realisitic. I was such a Type A personality... to a fault. He doesn't have the capability to handle everything the way I would, especially under the circumstances of being a caregiver to me, his mother and being the sole one responsible for taking the kids to everything. Not to mention, his grief in losing the mom he has always known which is happening so fast- she is really deteriorating quickly. Plus, the grief of losing the "ME" he has known as a wife. Our relationship has changed from husband/wife/team to him taking care of and worrying about me. And she also said 2) I need to start appreciating everything he does for me, the kids, every day and and we decided on a Rob Gratitude Journal that I can refer to when I get frustrated and also to make me recognize all he does do and his life and devotion. I realized after re-reading some of my posts, that I may have sounded ungrateful and a little spoiled and selfish. I realize that was the message but not my intent. I am also worried about him and him feeling so much panic and worry about things that really may be far fetched. I know my symptoms are pretty severe but I don't anticipate that I will be spending all that much time in the hospital. We NEVER know and it is a waste of time to try to predict the future. I think I need to maybe give him some extra attention and let him heal a little bit and go through his counseling/outpatient program. I know I am not the only one suffering...our whole family is. I hope I do not sound like this selfish and resentful person. I am just so emotionally, physically and mentally exhausted (as I am sure that my husband is feeling the way). But I guess after everything I just feel like I have so little left to give. My body is just so worn down and shutting down. Feeling that every little decision I make is questioned and calls my devotion to my own healing and health into question wears me down at times. Yes! I drank enough water. Yes! I took my meds! Okay, maybe I don't always make perfect decisions but I would give ANYTHING, and I mean ANYTHING to have my health...and it is not primarily for myself... it is for my family. I am also doing counseling through my employer's EAP program and right now I am doing this over the telephone for right now. We are not in any joint counseling yet but that is coming. My husband took my hand tonight, kissed my forehead and told me he loves me so much and he is sorry if he is driving me crazy but he just worries about me because the thought of losing me is something he can't get out of his mind (and granted he has seen some gory scenes after some of my more traumatic syncopal spells and head injuries- not to mention other organ shut down issues) but he learned in counseling today that his primary role is support, not taking control and worrying every day and really focusing on one day at a time- easier said than done- and making a point to tell me he KNOWS how much I've given up instead of constantly focusing on what I am NOT doing perfectly yet.

Thank you all for your points of view. I know I am a lucky girl. Before he fell asleep (always hours before me- thank you adrenal surges) he kissed me and said "I love you, ALL of you, autonomic you, autoimmune you, syncope you, and the you I fell in love with who is still there and I am NEVER going anywhere. I will always be here to fight for you and if I fight too hard or if it is your fight please just tell me and I will move back to support... but I am never leaving your side." I realized that through all of our conflicts, all of the trauma and stress we've been through, at the end of the day, I am a lucky girl. Thank you all for pointing it out to me when I really needed to hear it! I love this forum for the honesty and advice and I feel like I have progressed in a downward spiral so quickly that I know very little about what I am facing and your knowledge has helped me get the help I need and give me options for the future.

Love and hugs to all of you for taking the time to answer this complicated question/situation. It means so much to me that you would do so.

Jen

[peregrine]

Oh man, Jen, that last thing he said made me tear up just now :^) It sounds like he really cares, even if he cares too much, if that makes sense?

I am in a situation that's somewhat similar to yours, only maybe milder. My partner and I have been together for a while (over 8 years now), aren't married or anything, just a live-in couple. I developed the dysautonomia stuff in the last year and he's really having trouble dealing with it... he sees me as not the person he was partnered to back in the day, worries about my health, etc. He also has some depression that dates to before our relationship (and runs in the family) and he claims that he is only depressed because of my body being messed up, but I worry it is compounding already existing depression and making it worse. Plus I don't have the ability to complain with humor, if that makes sense - I can't say things like "oh man, didn't realize *that* was a side effect/new symptom!" or "did you realize that X percent of people with POTS aren't able to work" because then he just freaks out and gets even sadder, whereas for me those are coping mechanisms because learning more about my disorders always helps me feel more in control.

We have just started couples counseling (I already see a therapist and psychiatrist for my own mental health issues, which are well controlled) to help both of us deal with each other. As my therapist says, "It's easy - on a relative level - for you to come to terms with your condition; you don't have a choice, or - as you say - "it is what it is." For him it's a lot harder - he has a choice to make, and that's really difficult." The couples counseling seems to be promising so far - she is talking to both of us together, then each one of us separately, and then both together again.

Super glad you are going through with the around-the-house assistance stuff - that should help a lot. And last time I checked, POTS wasn't fatal, with the exception of stuff like fatal head injuries from syncope. Do you think it would reassure him if you wore a helmet to prevent injuries from falling?

[lissy]

Sorry about what you and your family are experiencing, I believe most of us have been there at one time or another. I couldn't read all the posts having a bad day sorry let me apologize if I repeat what anyone else has said.

Your husband is doing what he is suppose to and his worries and fears are normal, but voicing the negative outcome (what could happen) is not too healthy for you or him the counseling is a good idea. If you and your husband attend a church or have religious views, it might be helpful to consult with a counselor within that faith. As for the working can he work from home? At least till you become more stable?

I wish you both strength and pray that you see improvement soon:)

Edited January 18, 2012 by corina

[Trach]

Jen,

It sounds like 2011 was horrible for you. I am so very sorry. You do not sound like you are complaining at all. Everyone has offered great ideas.

I just have one more to offer - I talked to Dan Smith at NDRF to get POTS information last year. He and his wife are featured in the mystery diagnosis feature about dysautonomia. Dan's wife, Linda, has dysautonomia. They also have at least one child with the syndrome. When I mentioned to Dan that my husband was having a difficult time accepting the syndrome, Dan offered to talk to my husband. Dan said he frequently talks to spouses. My husband never talked to Dan, and now I regret not pushing the issue.

Dan is knowledgeable, hopeful, and calming. Dan or Linda may be able to offer come good advice to help both you and your husband. The Smith's also know Dr. Goldstein (sp?) at NIH. I understand Dr. Goldstein conducts dysautonomia research at NIH.

Many hugs to you!

Trish