As someone who adores my SO, I have to say I do not mind being the one who has to pick up the pieces. It's frustrating, difficult, sometimes lonely or angry-making. But if it makes it easier for him, then I've accomplished something- his burden is usually so much larger than mine that I try very hard to not to be resentful, and instead am just thankful for my gifts that I've been given. And it isn't like he's never brought soup to me in bed, or brought me flowers when I feel like hell.

Honestly, the most difficult part for me is how to help him when he gets depressed or frustrated. Frustrated is easier, but the depression, when he's worried about making sure his business doesn't fail because he has LD, when he figures he will never have kids, when he asks me why I would even want to marry him, or spend time with him, since he's "defective", or is just going to die anyway- those are the days that break my heart. Any suggestions for making those days go easier? I understand the fact that some days will just be THOSE days, but is there anything to do that would make them easier (selfishly, easier for me as well)?

As a partner, we just want to be included. We want to be a partner: the one you talk too, the one you cry or laugh with. Reaching out is the best thing you can do- in whatever way makes sense. Sometimes that is a hug, or a thanks, or even just a "help out here, would ya?" I know J has a hard time because his list is usually in his head, and he can't always articulate everything, but that is the one thing I do ask of him a lot. "Let me know what you want- give me a project. I can't read your mind, and I can't help you if you don't let me know what you need."

To give you some peace of mind: When I look at J, I don't see someone sick, or broken down, I don't see his diabetes, or LD. I look at him, and all that crosses my mind is "I love this man." It makes it easier to do whatever it takes- I'm not doing it out pity, or duty, or kindness. I'm doing it out of love for this fellow human that has chosen to share my life with me, to share his life with me, to be my companion, through anything and everything- and that is EVERY THING.

Long and rambling, so it must be time for bed...

Post edited by: VetNurse, at: 09/04/2008 21:04

Depression is a ugly creature. I think it affects everyone so differently. I've seen a lot of people lash out when they get depressed, same with frustration. And when Ed gets frustrated with me, we end up spatting, and it just turns ugly, and I clam up and disappear. Again, not all the time, but sometimes.

When feelings get hurt on either side, I think it's really even harder to reach out, so I guess that's one thing to remember, perhaps? I think you are a very strong person, from the sounds of it, to be there and just want to help and share your life with him. It's not easy, but I think trying to remember that when he lashes out, it's just lashing out.

We get frustrated with things that have nothing to do with you, our partners. And if you're the first thing we see after the frustration, well, you might be in the line of fire, and it's not about you at that point. Just today, I was mad at a stupid driver on the road (me being the passenger! lol), my new prescriptions went flying all over the car, and I ended up taking out my frustrations on poor Ed. I had to crawl all over the concrete at our friends' house and all over the car to find all the little sheets of paper from underneath the seats, and it was so frustrating, I just ended up crying and screaming, and he took the brunt of it. And then I was mad that he didn't want to get them today...It just led to a lot of miscommunication that could have been avoided. There were reasons he didn't want to get them today, there were reasons I NEEDED them today, ya know? But I was already frustrated, and he was already hurt.

It's so easy to look back, but you can't take things back. Is this making any sense? Is it helping any? I think I'm very tired, too!

Try to consider that it's very hard for us to articulate what we need. We know you can't read our minds, which is EVEN MORE frustrating. The brain fog that comes in just kills me some days, and I feel like an idiot when in public, because people look at me like I should know the words I'm searching for, and I leave places just almost in tears. You, being closer to it, know and understand it, so I guess I say, just try to recognize that there's a lost soul in there that some days just is trying to get out and can't. And other days, he's just so frustrated with something that you have nothing to do with, and you end up being the target. And yet other days, the depression is so devastating, he doesn't want to get out of bed, but he knows he has no choice because there are obligations he has, and that is all there is to it, but he'd like nothing better than to crawl under the sheets and hibernate for the next year or two. Obviously, this is all conjecture on my part, based on my own experience, but I think I've a pretty good idea...

As to dealing, I hope I've helped some, from my own perspective. Patience is probably the key. Forgiveness. Love. Give him space when he seems to need it, and hugs when he needs them, and I guess use your intuition to learn when to know the difference? Perhaps he may need both at once, even...Being here is going to help so much. It seems you've already gotten a ton of advice!

Ok, I think I rambled my way thru a lot of that, too...I will head to bed, was supposed to do that a while ago, yet here I am! LOL

That's the thing with LD that I HATE- all of the normal difficulty of communicating the contents of an idiosyncratic brain to another person is now 100x worse, because one partner can't remember, or can't find the right word, and it isn't their fault, so you can't be mad at them for it. (Well, you can, but then you feel guilty.)

I think you hit the nail on the head when you said "he may need both at once." I think that's what's hard with J. I get that message a lot, and it's confusing- leave me alone, I'm busy, I'm not happy, but I still need you here.

LD is definitely teaching me patience, and to not let the little things bother me (even when I'm not the most willing student.) If I'm not feeling my usual self, or I'm aggravated, it usually pales in comparison when we talk about our days, so we talk about it, but I'm more able to give it context. I'm learning to let things go a little easier, and to use J's calender when I need him to remember something. The other day I had to put "kiss your girlfriend" on his to-do list.

And when I'm ready to scream, I call one of my girlfriends, and we go to dinner, or coffee, and we talk about anything other than LD. In some ways, it's really difficult to have friends that don't know much about LD, and in some ways, it's SO nice. I suppose that's one of the luxuries that I have by being the "healthy" one- J can't get away from it, ever.

(Now I am rambling, but I keep coming up with these thoughts that give me a little glimpse of what it must be like to have two chronic, life-altering diseases.)

I guess it all comes back to holding on to the thought that he will get better, and I will have the man I first fell in love with back, just a little wiser, instead of someone who constantly has to fight for every bit of comfort he can get. Although, it is really nice to know that the one I love is this strong.

But you really should hold onto the image of him getting back to whom he used to be, because sooooooo many people here HAVE gotten better. This place is an amazing resource, and IDK what I'd do without it right about now. And it honestly makes me feel better that perhaps I'll have my answers one day, I think maybe I'm getting that much closer. I had a great visit with my PCP yesterday, and maybe, just maybe things are moving in a closer direction to my own peace. I think knowing we all have each other is a wonderful thing, too!

J's got the new iPhone, and some to-do list application, which is actually pretty cool. So he goes through and completes his list every day (which is why I can get away with adding things like "kiss your girlfriend"- he likes to check off that he's done it. ) He's been very fortunate so far- he's in pain a lot, but is able to work through it. He's such a stoic, that some days I force him to spend time with me for no other reason than it means he won't be working so damn much. I do a lot of reiki on him, since it helps his pain a little, and increases his energy for a while. He doesn't take any pain meds, since the doc says it might interfere with his recovery (not sure why, exactly.) Anyway, even the Oxycodone didn't help him (unlike me, who lays on the couch and hallucinates on Vicodin...)

The medical care in this country is horrible- we won't acknowledge that we don't know everything, which means people slip through the cracks all the time, and people aren't treated humanely. I'm usually disgusted when I go to the doctor. At one point, I had to revert to the "I won't pay for it", referring to a CAT scan (which I didn't want due to the radiation), before the stupid doctor would listen to my intuition (that I had an ovarian cyst, NOT gall bladder problems). It's pathetic- I tell J that he should just come to the clinic for his blood draws, since we would actually give a crap whether or not we hurt him, since the lab at the hospital sure doesn't. Luckily, his home health nurse is pretty cool, and willing to listen to suggestions from me or J, since we both have a pretty extensive background with medical things. His MDs before he found his LLMD just disgusted me- I sat there telling him that he obviously had something wrong if all of his joints were degenerating, but every one of them told him it was complications from having diabetes so long, never mind the fact that he's one of the best regulated diabetics I have EVER met. It's one of the reasons I like working in vet medicine- we're allowed and expected to care. I always see clients outside of work, and they tell me all about their pets. We get HUGE Christmas baskets, and lots of pictures of pets- thank yous for making them better, or making their last days/weeks easier for everyone.

What did your PCP say? Did you get any indications that you might be on the right track? Honestly, J self-diagnosed when he started waking up in the middle of the night with tachycardia...

I'm waiting for the next week, since I think it will be a turning point for J. This week was supposed to be the highest chance for him to Herx, and so far (knock on wood, and every other damn thing around me...) he seems to be doing okay- not better, but not curled up in bed hiding. So I'm going to give him a massage and some energy work (my goal is to be a LMT/holistic therapist), and see where it gets him. Hopefully, it might start him back up the other side. I also have to charge him up for the week I'll be gone. (This is where I get out my sword and say something about "Princess of Power.")

BTW, your quote is my motto. I'm big into impossible things. When J and I started seeing each other, the relationship was supposed to last 6 months, since I was moving. Haha! I kept showing up, and here I am 2 1/2 years later, doing everything I can to make this journey a little less bumpy. (HE thought he could get rid of me, but I'm as bad as that stupid little spirochete he has.)

For me, it's hard to give myself Reiki, tho, it seems like I only "get around to it" when I'm ready for bed or something, and for whatever reason, I fall asleep doing it, or I just can't seem to sustain it. I can do someone else just fine, but I do have to take care to eat well around it, a good protein meal and all that good stuff. But I can't seem to do it well for myself anymore. I have to talk to my Master about that, and see what all that's about!

Anyway, my visit went really, really well. My doc wants to do several things. We've changed several of my meds, put me on ab's, and I'm already starting to feel better. The swelling in my hands and feet has already started to subside. Hard to believe that after basically a little over 24 hours I'm feeling quite a bit better. The crummy cold/flu is worse, but I expected that. The UTI is driving me nuts, but I notice it so badly cuz it keeps me up all night!

He's ordering a CD57 and an ehrlichia test, but also wanted me to keep my mind open to the possibility of other concerns. He's not convinced it's Lyme, but he's open to the possibility. I like that about him, he won't close his mind to anything, which I just love. I do need to have a consultation for breast reduction, that's a MAJOR problem for me, and we discussed that at length. It's probably the biggest reason I have as much upper-body pain as I do. He thinks it will help significantly, and he feels he can help me get it approved thru insurance, even if they deny the initial claim. So I'm ready for that, I've been wanting it for years, literally.

What else? Gosh, I mean, I can't even tell you how great it was to be heard for once. I mean, he always listens, but I haven't been seeing him for that long, so it's like, WOW! when I go in there. The doc I had before I saw for like 10 years, and he poo-pooed it when I asked about CFS, and what do you know? I now have that dx...Go figure! And I had to go get that on my own, I mean, I'm the one who's been seeking all my own dx, not my doc--until now, that is.

I found out that the rheumatologist sucks. Big surprise, but they didn't listen, so I'm firing them. The nurses are an extension of her, and they didn't listen to what I asked, didn't run the CD57 in the first place, they ran a Western Blot, which I KNEW would come back neg, I'm not in an active phase, and wasn't when I was tested, so DUH! What would we expect from the test? Neg! Stupid humans! People wonder why I don't have patience with most people nowadays. Well, come on! What am I given to work with anymore? Please!

I hope that J does well this coming week! I'll keep my fingers crossed for you. Glad you like my saying. I read it a while back and decided that it was really for me. IDK who wrote it, but it hit me, and it's stuck with me all this time.

The TV stuff I'm into varies so widely. I love soaps, watch all the ABC lineup, I'm into a lot of reality stuff, but also love a lot of the primetime TV, too, drama mostly. I will have to find "Dead Like Me." I've heard of it--it sounds familiar.

I can agree with your stance on our medical situation in this country--I probably shouldn't even get started. There are so many things wrong with this country, IMHO, that it's a bad idea for me to go down that road! Ed and I talk about it all the time, and it's just ridiculous the things I'd do if I were ever elected to office. Problem is, I'd never be elected, because my platform would state the things I'd intend to do immediately upon becoming elected, and I can guarantee you I'd have WAY too much opposition! I used to be a staunch Republican, but I'm so an Independent now, it's not even funny. But too many people think they're right about everything without even looking at facts, they just make up their minds and move on without looking at anything...that's what's sad in this country. So many of us can't even defend our positions properly, huh?

Anyway, I better run...would love to get some sleep, but must stay awake another hour so I can take my ab's. Isn't that crazy? I can't have iron or calcium with them!

Have a good night! TTYL,

Jen