Belligerence & Short Term Memory

[TischSEB]

Hi Road Backers,

I thought about only PM-ing this to a few of you, but on second thought, realized this is probably something a lot of people can relate to and benefit from.

Here's the problem. I am the 'healthy' one in our nightmare, and so even tho I can empathize and bear witness to the minutia of agonies that this chronic debilitation brings, I can never truly understand the relentless psychological and emotional trauma of losing your health and the life you once knew.

Before this illness struck 2+ years ago, SEB was a muscular, healthy, athletic 30 something man who relished the duties of his job which included working on boats (as a Captain) and in the outdoors as an environmental scientist. This was a man who found being in an office an unbearable constraint. In addition he was athletic – playing in a basketball league several times a week, worked out a the gym, hiked and surf fished.
Nothing was beyond him physically, and he was always on hand to help friends move furniture up multiple flights of stairs or offer assistance to a stranded motorist.

During the last several years, his muscles wasted to such a state that he can barely make it up 3 steps and cannot get up off the floor if he fell. He spends most of his time in one room in a fatigued, depressed state, wondering what the heck happened. Over time he has been told by specialists that he:

1.” will not be getting better” (neurologist -NJ)
2. advised to “make peace with it” (rheumatologist-NY)
3. told “there is nothing I can do to help you, but make a followup appt so I can monitor your deterioration” (“top” neuromuscular specialist – NJ)
4. “I see something like this maybe once a year. I don't know what it is, but it's complicated” (“top” neurologist – NYC)

So, understandably, he has internalized a lot of these prognoses and in general feels pretty defeated. He will not read willingly read or research anything alternative on his own. I carry around and re-read “Cure Unknown” as if it were the Torah, yet he refuses to pick it up. He “skimmed” the “New Arthritis Breakthrough”, and is skeptical of his own Igenex Lyme results (altho he is convinced that whatever it is, it was infectious, and that any antibiotics/anti-protozoals may have some benefit). He refuses to follow a consistent probiotic program, and has added smoking to a list of bad habits.

In spite of all of this, I believe that he is actually improving, though nowhere near his former self. My problem is that I get a lot of heat for tracking his symptoms (daily) and reminding him about things like probiotics and the potential complications that could be added if he doesn't take them. To me, tracking the history and behavior of the illness is SOOO important. For example, he will completely downplay the fact that his heart issues are receding, the fact that he no longer walks with a cane, the fact that today, as we speak, he is attempting a visit to a gym. He will swear that he is no better than a year ago when he could not even turn over in bed – and I think in his mind he truly believes this. This “interpretation” of events is completely infuriating when we see doctors, because I feel he is truly misrepresenting the illness, and I usually do a followup/correction with my notes.

I do attribute some of this faulty memory, irritability, depression to the illness, but do any of you actual patients have this kind of thinking? Do you not remember the difference between being really sick versus a little less sick?? Do any of your helpers/caretakers drive you nuts??

To make my point about the glacial pace of improvement, I asked him this morning if an object moved one millimeter per year, would he consider it to be in motion? He said no. Then I asked what if he lived 5 million years, but really fast. He said that was absurd.

Anyway – I am both venting and looking for stories of your experience with this. Tks for listening and I appreciate any feedback.

:headbang::headbang:
Tisch

[Trudi]

[user=1536]Tisch&SEB[/user] wrote:

Before this illness struck 2+ years ago, SEB was a muscular, healthy, athletic 30 something man who relished the duties of his job which included working on boats (as a Captain) and in the outdoors as an environmental scientist. This was a man who found being in an office an unbearable constraint. In addition he was athletic – playing in a basketball league several times a week, worked out a the gym, hiked and surf fished.
Nothing was beyond him physically, and he was always on hand to help friends move furniture up multiple flights of stairs or offer assistance to a stranded motorist.

During the last several years, his muscles wasted to such a state that he can barely make it up 3 steps and cannot get up off the floor if he fell. He spends most of his time in one room in a fatigued, depressed state, wondering what the heck happened. Over time he has been told by specialists that he:

1.” will not be getting better” (neurologist -NJ)
2. advised to “make peace with it” (rheumatologist-NY)
3. told “there is nothing I can do to help you, but make a followup appt so I can monitor your deterioration” (“top” neuromuscular specialist – NJ)
4. “I see something like this maybe once a year. I don't know what it is, but it's complicated” (“top” neurologist – NYC)

Wow, Tish, he lost a lot in a very short period of time–and so did you.  Being that I am a woman in her 50's, I can't relate to how a robust man in his early 30's deals with such loss–being rendered helpless by this disease has to be devastating.  I think for you to continue emphazising the positive changes is good.  He is not giving up since he is attempting going to the gym–kudos to him!!!  Lyme is an awful disease–I don't know where he is in his treatment, but controlling the Lyme will get him his life back.

It's hard being a caregiver.  By the sounds of it–your doing a great job.  My husband is wonderfully supportive and I appreciate all he does for me!  So that he doesn't suffer total burnout, he does take time for himself and gets away to our cottage up north.  It's a good thing for him.

Take care,

Trudi 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Parisa]

Tisch,

I've been in your shoes.  I was in charge of my husband's whole protocol and was the supplement Nazi making sure that every pill and supplement was taken on time.  My husband rarely went online and I could not convince him to read peoples' stories here.  The few times he would go online he would invariably find some statistic to show that his prognosis was dire.  Well, yes, his prognosis was dire if he didn't get the proper treatment.  I knew that with the proper treatment those terrifying prognoses would go away. 

I remember reading somewhere of patients who had basically recovered from their rheumatic illness but when asked whether AP had helped them many said no or only a little. 

 

[mj47]

Tisch,

First off….***hugs to you***

Although my husband does not have the same symptoms as SEB, I can relate to your story.  I totally understand your frustration at him not recognizing the progress that has been made.  I too have to remind my guy that he no longer walks with a cane, that he can eat without pain in his jaw, that he sleeps soundly through the night, etc.  I have to do this because he gets so frustrated with his current state &/or the new things that crop up as he feels relief in any given area…I believe he too forgets how far he has come.

I also try to keep a daily record of his progress & practically quiz him nightly on the various problems he's having so that I can jot down notes.  But, recently I've decided that I'm going to let up on this.  I have realized that there is only so much I can do & he told me that he absolutely does not like to focus on what's “wrong” with him & that these nightly inquisitions just make him feel terrible (especially if there's been no progress).
I think we have to remember the human aspect of all of this & that we are not the sufferers of these issues & cannot force these guys to deal with it like we would ourselves….despite the fact that we are trying so desperately to help in the ways we think are most important.
I know that sometimes my husband will not let me know that he's feeling improvements for days because he doesn't want to 'jinx' it or have it go away by acknowledging it.  So…I realized that a lot of my copious notes on his progress are actually incorrect.  I think when I figured that out was when I decided that I would be there to assist, but that I couldn't hold the reigns on this thing, cuz even when I thought I was…I wasn't.
That doesn't mean that I've stopped reading/researching things for him.  He is like SEB, hasn't read the New Arthritis Breakthrough, has never browsed this site, etc.  He gets his info via me…and he also gets reminders to take certain supplements too.

I am so sorry for all of the aspects of life that have been affected by SEB's illness…both for him & you.  I celebrate the progress he's made with you though!  He's at the gym??!  That's fabulous news!! 
But, I want you to remember that this is your life too.  Perhaps you can get to the gym (if that's what you like to do)…or go out for some drinks with friends…too bad we're not in the same city…we could do it up!!  I have been focusing really hard on my life & where I want to be going because I've realized that I'm half of the equation here.  Just because I'm not sick doesn't mean that I matter less & if I drive myself into a bad state by obsessing on his illness, it's bad all around.  And, yes…I believe that my “hovering” 😉 has been creating a bad energy between myself & my husband.  I am working on rectifying that by redirecting my focus to myself & my business.  As I do this, the wrinkles in our relationship are getting a bit smoother. 

Again, a big hug to you.  Please feel free to PM me anytime…I was actually just thinking about you the other day….
I don't know if what I wrote helps at all, but I know that when I reached out for help on this forum, every response gave me the strength I was looking for.  I know it sucks to be the sick one & it sucks to be the caregiver too.  These illnesses just suck.  But, there's hope!  And SEB is so lucky to have you in his corner (even if it doesn't seem like it sometimes).

xo~
mj

[Parisa]

Tisch,

I tried sending you a PM but I keep getting an invalid error message.  Maybe if you PM me I can reply to your PM.

[judy cash]

Trish and MJ,

Those two men  of yours are so lucky to have you both. For all that you are (TRYING) to do for them. If I only had that kind of support. You two and (ALL) the caregivers, are the most special people .I know that it may seem like they don't  appreciate it, but they couldn't do all this without you guys. I think deep down it has to be harder for the men to be sick, because they are supposed to be the (STRONG) ones. I think they may feel inadequate as men, and they are taking it out on you. Not really meaning to hurt you. I can't even imagine being the caregivers. I  don't think I would handle it very well.

 I am the sick one, and even though I am doing  better myself, and I was never as sick as your guys, I have had to do all this on my own. All the research, reading, studying,etc.  Some days I have to( make myself ) take my probotics, and vitamins etc. Some days I think , am I taking the right kind or would another brand be better. Some days I think if only I had someone here to help me understand all this. I am always thinking about my health, which is a worry that I hate. I think of my future as a elderly person, with an illness. I hate be 51 and feeling this way, I should be enjoying my life right now. My husband was very supportive of getting the treatment, even driving me to Iowa, over 700 miles away, and I am grateful for that. It does seem like now he just expects me to be well, and thats IT!!!!!!. He doesn't know all the times that I have cryed over all this, for myself, for him, and for my 9 and 12 year olds. I guess that I'm just trying to help you understand, that (ITS NOT YOU) and you should have a life besides being caregiver all the time. Make time for yourselves.Don't put yourselves in the position of carrying all this on YOUR shoulders, there is only so much that you can and should have to do. Does this make sence? I hope it helps in some way.

Love to you both,

Judy

[Kim]

Tisch,

Keep telling yourself this bad attitude is only temporary and will improve as he gets healthier.  One of my coping mechanisms when I was at my sickest was to stay somewhat in denial, maybe that's what SEB is doing now.

Hang in there, the thanks will come later. 😉

Take care…..kim

p.s. I hope he's going full speed ahead with Lyme tx.

[Maz]

[user=1536]Tisch&SEB[/user] wrote:

I do attribute some of this faulty memory, irritability, depression to the illness, but do any of you actual patients have this kind of thinking? Do you not remember the difference between being really sick versus a little less sick?? Do any of your helpers/caretakers drive you nuts??

Yes to all of the above!

Maybe the only difference between SEB and I is that I was the one doing the research for myself to get well again and it did help to empower me and helped to drag me out of depression. I've often talked to my husband about this and he said if it had been him, he would have just gone to the doctor and taken what he'd been prescribed, because as the primary breadwinner for the family, he would have needed to keep functioning. That said, he has supported my choice totally and we both are grateful that I didn't have to work while so ill. I am really grateful to him that he has never held it against me or that I haven't been what I used to be, being very patient to walk beside me on my road back. He's also seen me improving consistently, so he is often the one who will remind me how far I've come when I have hit a roadblock along the way. As much as I may have resisted hearing his words and preferred self-pity, I could not have done without him saying those words…he has been the only light in the darkness at times…much as you must be for Seb, Tisch. So please never forget that…no matter what….the people who love us and care for us our absolute rocks! Without my hubby, I don't know where I'd be. I'm sure Seb feels the same about you.

The anger or beligerance I may have taken out on him has really not been anything to do with him, but my own frustrations and fear. At times, he does the hovering thing, that MJ described, but he's sensitive enough to know when to back off now. As I started to improve, I had to gently ask him to please let me do things for myself again as I needed to feel useful again. Maybe there are small things you could ask Seb to do for you so that he knows you need him, too? I know I felt useless and a burden and men must feel this in their own ways…emasculated. Above all, knowing you're loved, no matter how you feel about yourself, is such a gift.

Yes, I have and still do forget how far I've come. I think there is a kind of post-traumatic stress associated with all this….a deep, ingrained fear of going back to the horrible pain and suffering in the beginning. Little steps backwards bring it all back and the mind has a way of reliving those early days and bringing all that fear and suffering into the present. It's a real exercise in spotting those times before they get out of hand and sometimes I win and sometimes I lose. Knowing what it is, though, helps to dispel it much faster.

You're such an amazing woman, Tisch…I think you all are…Parisa and MJ and anyone who cares for and advocates a sick loved one who can't do it for themselves. There should be awards of recognition for people like you…seriously. All I can do from afar is send you the “Dude” icon…but it comes with a lot of respect. :dude:

Peace, Maz

 

[Joe M]

I think a lot of this boils down to the difference between men and women, or type A and B personalities.  Life got a lot less stressful for me when I realized there are things I can't control or figure out.  I couldn't imagine being quizzed nightly about every little bodily function.  Most men would feel like they are being nagged.

[mschmidt]

Tisch,

How lucky SEB is to have you!  I wish my husband was as proactive as you are–especially when I was at my sickest.  Like many, I took it upon myself to get as much knowledge about my disease, which made me agitated on a daily basis.  I was so sick when I was doing it but, I'm glad I did because it was empowering me, and helped me to get out of the slump and depression of being a sliver of my former self.  Post-traumatic stress disorder is an understatement, and pain does terrible things to your mind.  I remember not sleeping more than a few hours a night because of the anxiety of not having a diagnosis as I was getting sicker, no one believing how sick I was, and having to figure it all out myself.  Now that I'm better, it's hard to remember those times, and when my husband reminds me of how bad I was, I snap back at him because I'm still not 100%. (and I remember begging on my knees to God many times to just let me be 50% better a year ago)  At times I feel robbed of what I thought would be the best years of my life–I got sick less than a year after I was married, and at 37, was planning on trying to have a child (something that seems to be so far away, if not impossible now), not planning trips to see doctors, and sit at home getting iv's from a home healthcare service.  I even downplay that when it's happening because if I had to think about the brevity of it all, I would be rocking back and forth in a corner. 

Perhaps I am in denial of how bad I was, as the fear of ever going back there is an unbearable thought for me.  Keeping myself in denial affords me the luxury of keeping some sanity–something I felt I lost when I was really sick.

I've said it before–being sick is really hard…taking care of someone who's sick is oftentimes more difficult.  I can relate to others who have struggled with their health now but, when I was healthy, I don't think I could wrap my head around it.  If he doesn't say thanks to you, let me say it on his behalf:  “Thank You for all that you endure, for the patience, compassion and empathy you display on a daily basis–it is deeply appreciated, and I couldn't get through the day without you.”  I know he feels this way, it's just that all the other noise surrounding him gets in the way of expressing it to you.

Hang in there!

Maria

[mj47]

[user=20]Joe M[/user] wrote:

Life got a lot less stressful for me when I realized there are things I can't control or figure out.  I couldn't imagine being quizzed nightly about every little bodily function.  Most men would feel like they are being nagged.

Joe,

This is certainly where I am right now (realizing that I can't control everything).  I know my husband feels “nagged” when I ask about his situation…and I am definitely pulling back now that he's feeling somewhat better.  And, life is starting to feel a bit less stressful.  But, I know in my heart of hearts that if I hadn't gotten in there & “nagged” him when he was at his worst, he wouldn't be on his road to recovery.  I guess it's that maternal instinct we women innately have.  😉

~mj

[Cheryl F]

[user=20]Joe M[/user] wrote:

I think a lot of this boils down to the difference between men and women, or type A and B personalities.  Life got a lot less stressful for me when I realized there are things I can't control or figure out.  I couldn't imagine being quizzed nightly about every little bodily function.  Most men would feel like they are being nagged.

While I do agree, Joe, that men would feel nagged.  I too hovered over Jess and everytime I saw the sightest evidence of something wrong, I would start quizzing her.  She didn't appriciate it.  It reminded her of how sick she was and she knew how scared I was and that then in turn affected her. 

I do so feel for SEB in his current state, I think being a man would make this harder becasue of the expectations that men place on themselves.  I have Faith that SEB will come through this. 

Cheryl

[TischSEB]

Hello again,

Thank you all for this torrent of support and taking the time for the many lengthy descriptions and stories. It is very helpful to hear all of this. Based on a lot of your experiences and suggestions, I have decided to lay off the daily documentation and summarize weekly.

Trudi – Tks for writing. Your husband sounds like a gem. I get away once in a while too, and it does make everything better. SEB often reminds me that he needs “alone time” too, just does not have all the “getting away” options due to the Lyme limitations.

Parisa – As usual, your similar experience (and how far your husband has come) is very, very encouraging! Thank you.

mj47- Thanks for the hugs and words! Slowly the fact that I cannot control and understand everything is sinking in – and it's true that is freeing. I think I have been stuck in crisis/ problem-solving mode for so long that it is hard to change gears. Things are a lot more stabilized than they were a year ago, so I agree – maybe time to change to focus. SEB also agreed that he withholds info due to not wanting to jinx anything.

Judy – Yes, this helps! You may be right about it being harder for men. There have been some really hard times in public where I have had to lift SEB out of chairs, or help him balance while walking. Some of these were in front of co-workers and family, where you KNOW everyone is watching closely. It does look bizarre, b/c with clothes on people do not understand what is wrong and why does this big (tall) guy need this girl to lift him up? I know he was really embarrassed by this – he used to bench press more than what I weigh!

Hi Kim – Tks! We just had our 2nd LLMD appt today, had our dosage tweaked, and are being referred to a doctor for possible IV treatment. This doc does not think Lyme explains everything, but it is definitley a factor – so if we address the Lyme, the other “stuff” will resolve.

Maz -I think what you say about Post Traumatic Stress is dead on – I never thought about it that way, but it really makes sense. Frankly, I think I have this myself. Because this all started with a cardiac emergency and rushing to the hospital (and then thinking – what if we had not made it in time??), I have retained that panic throughout. Don't get me wrong, a lot of times this is warranted, but not every single day!

Joe – Right to the point! And a very good one, I have to say. I would hate being nagged myself so going to keep that in mind.

Maria – Thanks for pointing out the pain part. There have been many times when I have not factored this in as an explanation for 'belligerence'. I have that feeling too of being “'robbed” of some good years. There are definitely some things that have passed us by and it is very sad and painful. I have realized tho, that if you are healthy, there is very little to complain about.

Cheryl – Yes, I can see the constant quizzing is also a constant reminder…
I have faith too – that we will get through this – and a lot due to the great info and support from this board. I can only imagine where we would be without it.

A big THANKS again to everyone!
Tisch

[A Friend]

Tish,

I tried to send you a Private Message a few days ago, but I believe your contact name may need to be corrected, as I got a message that it was incorrect, or something like that. 

Hang in there, for it sounds like things are at least going in the right direction. 

AF

[Parisa]

I think there is some glitch with her name.  I know the PM says Tisch but her screen name is Tisch&SEB.  Perhaps, the problem lies somewhere there.

[Author]

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