I feel like a horrible person...

[Moonflame]

I've never posted on this part of the forums before so I'll introduce myself and then explain my current situation. I have Fibromyalgia and Myofascial Pain Syndrome and Lupus. I was diagnosed about 16 years ago and have learned over the years how to mostly mange my life to deal with being sick and know how limit my activities to keep the flares to a minimum.

Last weekend my hubby was helicoptered to UVA Hospital to repair an Aortic Dissection. The tear was 1 mm from his heart and they said if it had gone any farther he would have just dropped dead instead of collapsing and being rushed to surgery. I spent 2 days in a blind panic while he was in ICU,visiting when they would let me and pacing the hospital halls when they wouldn't, and 2 days living in a chair by his bed when they got him into a regular room. Thankfully, he's doing well and they sent him home to recuperate. They said he'll be 100% in about 8 weeks, but of course after reading stuff on the net I'm still worried. I should have known better than to google .

The problem is that of course all of this has been emotionally and physically exhausting and now I'm in major flare. I haven't been able to pour from a full gallon of milk in years, because they're so heavy, but now I'm fetching and carrying non stop all day, carrying 35 lb bags of cat litter and 20 lb bags of cat food, carting off big bags of trash, etc. All things hubby used to do, because I couldn't. So on top of the usual stuff that I could barely handle doing, I'm doing all of the household stuff he did, plus nursing him. I can't even get help from my 18 year old son because he broke his leg in April and is on crutches (hopefully he'll get his cast off tomorrow), so I'm fetching and carrying for him too, which is why I was in flare even before Hubby's situation. I should be on lots of meds, but after we moved a few years ago the thought of finding a new doctor was so overwhelming that I have been bad and just haven't done it, so I have no prescriptions.

I feel like a horrible person, because I'm starting to resent the fact that he has pain meds and I don't. He's got me taking care of him and all of our friend's and family are very concerned about him, which is perfectly reasonable, but almost noone asks how I'm managing or even if I'm ok. I feel guilty because I know I'm worrying him when he sees how much pain I'm in and how exhausted I am, but I can't hide it from him. It's hard to hide the fact that I've had to start using my cane for the first time in about 7 years, and that I'm hobbling around the house like I'm 105 years old. On top of that I don't know how we are going to make it financially since he'll only be getting a little less than half his normal paycheck and we spent our emergency money paying for the time he lost at work in the big snowstorms this winter and the time he had to take off to deal with all of our son's doctor visits and orthopedic surgery, plus the cost of everything insurance didn't cover for that. I can't even go out and try to find a job to try to make up the difference since I'm to sick and too busy taking care of him. This is all very stressful to both of us, but I can't show him how worried I am because to heal he has to keep his blood pressure down. His family won't help financially and mine can't. So instead of being able to just be grateful that he survived and take care of him until he's better, I have to scramble to see if I can find a way to get by at the same time that I'm fighting what seems like a mountain of pain that's constantly on the verge of crushing me. It's going to take at least a week to 10 days to get myself a doctor's appointment since they want my old records before they'll see me so I can get the meds to help me get thru this. I feel like a real piece of #$*& resenting it when I watch him take a pain pill after describing his pain as a 2 on a scale of 1-10 when I am trying to deal with levels around 8-9 with nothing. All I should be feeling is gratitude that he survived and is doing so well (and I am soooooo grateful), but instead I've got resentment, fear, worry, pain, and exhaustion fighting for a place at the table. And he knows me so well that he can tell I'm not doing well and that makes me feel even more guilty for worrying him, which makes the stress even worse, and so on.

Thanks for listening to my rambling. Sorry if I repeated myself or didn't make sense, the fibro fog is thick and heavy tonight.

 

[beebopnjazz]

Wanting to do justice Moon - I needed to wait until I was home from work to respond. You are in a horrible predicament which will come to an end (as your DH is supposed to fully recover) - but now - let's talk about you - the caregiver.

I've never posted on this part of the forums before so I'll introduce myself and then explain my current situation. I have Fibromyalgia and Myofascial Pain Syndrome and Lupus. I was diagnosed about 16 years ago and have learned over the years how to mostly mange my life to deal with being sick and know how limit my activities to keep the flares to a minimum.

Last weekend my hubby was helicoptered to UVA Hospital to repair an Aortic Dissection. The tear was 1 mm from his heart and they said if it had gone any farther he would have just dropped dead instead of collapsing and being rushed to surgery. I spent 2 days in a blind panic while he was in ICU,visiting when they would let me and pacing the hospital halls when they wouldn't, and 2 days living in a chair by his bed when they got him into a regular room. Thankfully, he's doing well and they sent him home to recuperate. They said he'll be 100% in about 8 weeks, but of course after reading stuff on the net I'm still worried. I should have known better than to google .

The problem is that of course all of this has been emotionally and physically exhausting and now I'm in major flare. I haven't been able to pour from a full gallon of milk in years, because they're so heavy, but now I'm fetching and carrying non stop all day, carrying 35 lb bags of cat litter and 20 lb bags of cat food, carting off big bags of trash, etc. All things hubby used to do, because I couldn't. So on top of the usual stuff that I could barely handle doing, I'm doing all of the household stuff he did, plus nursing him.

Do you have a dolly or something that's on wheels you can use to maneuver heavy items around? Easier to slide things onto a dolly and then just wheel things around.

Of course, if your son's cast comes off - problem solved.

I can't even get help from my 18 year old son because he broke his leg in April and is on crutches (hopefully he'll get his cast off tomorrow), so I'm fetching and carrying for him too, which is why I was in flare even before Hubby's situation. I should be on lots of meds, but after we moved a few years ago the thought of finding a new doctor was so overwhelming that I have been bad and just haven't done it, so I have no prescriptions.

Aren't you qualified for SSD? I would think you might be - that will help with expenses and RXs. You do need to find a doctor Moon....so you can be as comfortable and have as much ease of movement as possible.

I feel like a horrible person, because I'm starting to resent the fact that he has pain meds and I don't. He's got me taking care of him and all of our friend's and family are very concerned about him, which is perfectly reasonable, but almost noone asks how I'm managing or even if I'm ok. I feel guilty because I know I'm worrying him when he sees how much pain I'm in and how exhausted I am, but I can't hide it from him. It's hard to hide the fact that I've had to start using my cane for the first time in about 7 years, and that I'm hobbling around the house like I'm 105 years old. On top of that I don't know how we are going to make it financially since he'll only be getting a little less than half his normal paycheck and we spent our emergency money paying for the time he lost at work in the big snowstorms this winter and the time he had to take off to deal with all of our son's doctor visits and orthopedic surgery, plus the cost of everything insurance didn't cover for that. I can't even go out and try to find a job to try to make up the difference since I'm to sick and too busy taking care of him. This is all very stressful to both of us, but I can't show him how worried I am because to heal he has to keep his blood pressure down. His family won't help financially and mine can't. So instead of being able to just be grateful that he survived and take care of him until he's better, I have to scramble to see if I can find a way to get by at the same time that I'm fighting what seems like a mountain of pain that's constantly on the verge of crushing me. It's going to take at least a week to 10 days to get myself a doctor's appointment since they want my old records before they'll see me so I can get the meds to help me get thru this. I feel like a real piece of #$*& resenting it when I watch him take a pain pill after describing his pain as a 2 on a scale of 1-10 when I am trying to deal with levels around 8-9 with nothing. All I should be feeling is gratitude that he survived and is doing so well (and I am soooooo grateful), but instead I've got resentment, fear, worry, pain, and exhaustion fighting for a place at the table. And he knows me so well that he can tell I'm not doing well and that makes me feel even more guilty for worrying him, which makes the stress even worse, and so on.

It's okay to vent Moon - all too often people forget about the caregivers - the exhaustion levels (even for those who don't have their own medical issues to deal with) - the worry over the health of a loved one and keeping all the doctor appointments straight and trying to get the bills paid too. You have a lot on your shoulders right now - but try to remember - it WILL get better (hopefully your son will be cast-free tomorrow and he will be able to help you with the physical side of things).

Try to find a little "you" time - soak in the tub - read a book - whatever relaxes you - try to find an hour a day just for YOU. You will be able to help no one if you do too much.

As for money there are organizations that help with emergencies. Try to research for your area there may be help with rent/mortgage, utilities, etc. Social Services at the hospital might know who can assist you during this trying time. Having a note from his doctor might help with your utilities not turning off service (but the bill will still be owed) - here in PA we have LIHEAP for heating in the winter - I'm sure there's an alternative for electric and water, etc.

When my DH was in the hospital for a major surgery the patient advocate that works at the hospital made the least expensive arrangements she could find for the surgical supplies, equipment and nutritional support he needed while his J-tube was in. It was delivered within an hour of his return home and set up. The patient advocate did as much as she could to tie up the details so that he could come home to recover.

As much as you don't want to, you might want to speak with someone from Welfare to see what emergency programs they have available or if they know who has programs that can help you with any of your expenses.

Thanks for listening to my rambling. Sorry if I repeated myself or didn't make sense, the fibro fog is thick and heavy tonight.

 

[jj2]

Moonflame I totally understand where you are coming from and there isn’t much more that I can say that beebopnjazz hasn’t said.
You are not alone though. I’ve been taking care of my disabled husband for near twenty years. Still to this day, everyone ask how he is doing. Sometimes I feel like this non person, and if they know I’m around, it’s because they want me to do something for them. Rarely does anyone volunteer to help and at 61, since I do for him and me, and have taken over a lot of the outdoor stuff that he use to do, it’s not easy. And, like you, I keep my aches and pains to myself and there are times that I resent that I feel like I have to.
I also know about the financial crunch. It took two years to get him on SSI and by that time our financial situation was totally in the toilet. Then we were faced with surviving on his disability but at least it’s a regular income but it was no way near what he was bring home.
His medical is covered by the VA & Medicare and all I got is major medical. I thank God that all I got wrong is a back problem, knee & hip problems (arthritis) that isn’t constant---just says hi when I overdo. I was diagnosed with COPD but since turning to vaping, it has pretty much disappeared.
To stretch each dollar, I have found a clinic that bills by income and there are places that you can get your meds at a lower charge---sometimes free. Have you checked on these? Have you checked on Food Banks so you don’t have to spend what you do have on food.
There is also Pet places that give pet supplies away for free. Check at your church too, sometimes they have food banks and will deliver.
I know I’m focusing on the money part of your problem, but when finances are a problem, it makes the situation seem hopeless.
Just keep in mind that this is a short term thing and consider what has to be done and what can wait until your son is available to help.
One more suggestion, if you have a Goodwill or Salvation Army close, see if they have a small wagon---one small enough to use inside the house to help you move things around. It won’t help with the lifting problem but at least makes it easier to transport the heavy stuff and it will cut down the multiple trips from one room to the next.
I actually have a couple of them and a cart on wheels.
Here’s hoping for your husband’s speedy recovery and that things get better for you.
God Bless

 

[Ruchamah]

How about you REJOICE because you really ARE able to do the things that you THOUGHT you coudlnt do? How about you REJOICE because you are able to help your hubby NOW, in HIS time of need? I would be on my knees giving THANKS that I was able to DO for those who DID for me for SIXTEEN years.
..just my opionion

 

[suddenly]

I have been in both situations and neither of them is easy.

My mother had MS and I took care of the whole house and my brother since the age of 9 or 10. I resented having to do this and not being able to play like other children. I know this is very selfish, but I was a child.

I recall one day I went outside and my uncle who lived next door asked me why wasn't I inside helping my mother. (Guilt, Guilt, Guilt) I went into the house crying. The worst part of this is my mother was always in bed and always crying. I would ask my father what is wrong with mom? "Oh she is just tired." I was never told she had MS until I was much older and felt that my mother just didn't want to do anything. I made the mistake of telling my father this and ended up with a bloody nose and lip. I think he cried harder than I did. Years later I realized he was just over burdened by the stress.

At around 16 I went blind for about 3 months. No one could figure out why so the doctor said "Oh its just female problems." For years I had various strange symtoms and again "female problems" It wasn't until I was paralized from the mid chest area down that they ran any tests on me. I too had MS.

My husband left me, my so called friends never came around anymore, and I was left to take care of 3 children on my own. It took me two years to adjust to the fact that my life was going to be forever different. Deep, deep, dark depression and a lot of self pity.

I was lucky in the fact I was able to walk again within about a year of serious physical therapy. I seldom if ever speak to my children about my constant pain, the numbnes etc etc. I could go on and on with symtoms. I do not want my children to feel responsible for me or to worry about me. The only thing I cannot hide is the times I go blind. I see them when I am feeling not real bad, and not at all when I am real bad.

If it ever comes to the point of someone taking care of me, I haven't let myself go there, and hopefully it won't happen.

I have been on both sides of this. The caregiver and the ill one. Both are just as bad as the other. Just try not to be too hard on yourself for the things you can't do and be proud of what you can do.

 

[Moonflame]

Thanks everyone for your kind words of support, just knowing I could vent here helped a lot too. Things are definitely looking up. Hubby is doing very well and is doing a lot of things for himself now (as long as they don't involve lifting) and is making me rest too. I've decided that it really doesn't matter how many dirty dishes are in the kitchen and am using paper and plastic until I can get to them. Everything else will just get cleaned when I get to it .

Financially, things are easing up as well. We've talked to our landlord and he is letting us not pay rent for the next 2 months and just add a bit to our rent after he goes back to work until it's paid off. Our lawn guy is letting us pay him when hubby is back at work as well. It's amazing how understanding people have been.

I've made an appointment to see a doctor and get back on meds. Thankfully I only have to wait 2 weeks since we live in a small town and only have to wait long enough for them to be able to get all of my records. I'm going to try to get to the consignment shop that's close to here and see if they have a wagon. I wish I had thought of that years ago . My son's friends have been very helpful in dragging off all of the trash that built up and have offered to help whenever we need them to.

I am very grateful that hubby is doing so well and things seem to finally be settling down to some semblance of normalcy. It amazes me that he almost died less than 2 weeks ago and now my main worry is him trying to do too much too soon. Men are stubborn creatures. We had his one week after leaving the hospital checkup yesterday and they are very happy with how he is doing other than upping his Blood Pressure meds. They had it regulated at the hospital, but now that he's up and more active it was a little higher than they wanted it, not high for normal people, but higher than they want it while that artery is healing. I feel like we were so lucky. If this had happened while he was at home or driving he probably wouldn't have survived. Since it happened at work he was only a few blocks from a great hospital that recognized the problem and were able to get him shipped to where there were experts very quickly. The guy who did the surgery is the head of the department teaches other people how to do this type of surgery, so he was fantastic. Everyone at the hospital was super kind to us both. The hard part of that was that there are 2 big schools in Virginia that are huge rivals. Hubby and I both went to Va. Tech, and he was treated at UVA. Now I'm not going to be able to make the obnoxious comments about UVA when I watch sports because I'll feel guilty ragging on the place that saved his life.

Thanks again for the support and for letting me know it's ok to feel overwhelmed.