Perspective on Support Please!

I'm not married, but I can completely relate to the friend issue you're having. I actually don't even tell any of my friends or acquaintances that I have Lyme. The only people that know are my siblings and parents. Luckily they are very supportive.

Other people..........not so much. Lyme is considered a joke in my area of the Northeast by the entire medical community and most of the general community. Everyone thinks it's easily cured with a few weeks of doxy. If you're not cured from that, you're a crazy hypochondriac. That's what most think.........

Do you have an in-person support group that you could attend? Sometimes I find that helps me. I also find it helpful to channel a lot of my anger and frustration into learning and researching as much as I can. I constantly look up new treatment options, journal, blog, and I'm about to start taking some alternative medicine certification courses with the goal of helping others with chronic illness. Perhaps you could share some of your research with your husband by referring him to the ILADS website, having him read Cure Unknown or watch Under Our Skin. Sometimes seeing things in a different perspective makes people realize the seriousness of these conditions.

I get VERY angry and upset about what I've lost since getting Lyme and Co. It takes a lot of effort for me to stay positive and focus on the things that I still can do. However, I think attempting positivity is one of the best ways to cope with this. We really have no answers at this point as to when, how or why some people get better and others struggle so much to get to remission.

Shadow,

I too can relate to your posting.

I'm always telling my husband how tired I am, he never knew the real me... we're together for about 10 years. He just thinks that this fatigue goes away with a few nights of good sleep. It's really frustrating, no one who hasn't been there can actually feel just like we do... 2 days ago, he was complaining that he was having a headache. I had a bad day, just came home after 9 hours at work, had aches everywhere and I just couldn't handle him complaining about a simple headache. I told him that that day my head, hands, knees, thighs, feet, stomach and back hurt. He was really shocked... (afterwards I felt guilty cause he too is allowed to have a headache...)
My husband doesn't even want to read about this disease - it makes me mad when I think about it. He says he takes everything I say about it seriously. I think he just doesn't want to know the details. He's been supportive though, he's been helping me more and more in the house, he's doing groceries, he's cooking more often - I think he really sees I'm doing worse and worse. I try not to freak out about it, try to accept he just can not really know how I'm feeling. And when I'm confused about 'us', I try to put in mind that this situation is not the ideal situation to make important decisions about my marriage. When I look back at those moments, I'm glad I haven't taken any permanent decisions. He's also just patiently waiting until I get better to start having children (he's 42 now, he's been patient for 10 years, never complained about it, just waits without any comment - that means a lot to me too).

My husband is French speaking, and I've been trying to find a good site about chronic Lyme, but the information is not as extensive as on English forums/sites...

Also: I was really sick when I was about 15, and I didn't have any support then either, and it was the big C. I've gotten used to it I guess. It doesn't mean though that I can't get upset or angry about it...

about the 'friends': I lost a lot of them back then, I'm loosing quiet some now again. I've been really upset about that, but lately I'm just focussing on getting all the rest I can get, on detoxing, on being selfish in fact (for once). I'm feeling so bad that I can't even get agitated about it anymore. They don't call - I don't call. They're not interested, I'm not interested.

Try to focuss on getting better, and vent on this forum when it's getting too much, it really helps.

You're not being a dramaqueen at all - it's a free accessory that goes with the disease :-/

Hi everyone! I'm not married. But wanted to.chime in. It'd hard, my sons father and I aren't together and he started an argument this week. I told him how I feel and might not be able to get him when he comes to visit from the bus station because this disease is a moment to moment thing. He got an attitude. I can tell he's upset and can't understand why I'm still sick. I look fine but if he, some friends and family could see the inside!

Long story short Shadow my mother told me when she was sick with Ovarian cancer that you find out your true friends, supporters, etc in your darkest hour. She is absolutely right!

I pray for all of your husbands and that they get it together.

My sons father hasn't barely spoken to me since he got here and I'm not even hurt by it. Annoyed if anything.

In order for us all to heal we have to rid the stress in our lives. That includes people and keep praying for your hubbys.

Shadow I'd love to do tea soon. We live by each other and maybe if we can find others in the DC area they can join us. We can support each other and get through this!

I'm married and struggling with this too. I agree with Traveler's perspective. I know he's scared, and feels helpless. He's told me before he just doesn't know what to do when I tell him I'm in pain.

However!!! We have a toddler, so to me it just seems like common sense that if I say, "hey I'm having a bad day", he should say ok I'll take the baby to the park, or we'll go play in the living room,
Or ANYTHING to show even the slightest hint of helping me, but it rarely happens. He refuses to watch Under Our Skin, which I get it, it's long and he's busy (even though he finds time to watch a James Bond movie or batman or some crap several times a week), but I found a 4 minute video I asked him to watch, handed him the iPad, watched him roll his eyes, stair at it for 30 seconds and throw it down on the bed.

Idk what to do anymore. The damage is getting to a point where idk if it can be repaired. My current plan is to get better and leave, and that breaks my heart :(

Me too Lymer- I am sorry and sorry to bring up such a painful topic thoughts and prayers sent your way...

Post Edited (shadow69) : 2/17/2013 9:12:49 PM (GMT-7)

Lymer,

I'm sorry you're having a hard time in your relationship...

I don't know your personal situation, but I wrote this in my first reaction on this thread, so did Traveler later on:

If I would have gone through with what I felt towards my relationship these last 6 months, I would have left my husband since. But I try not to take final decisions right now. I think we have too much going on on the mental/emotional/psychological level, on top of everything we experience on a physical level. Our lifes feel/are like one big mess... I've been at the point of blowing up everything, on several occasions, but I haven't yet, and I don't regret it.

I hope you'll get through it though...

I wish you a lot of courage

Marie

Shadow, I think therapy is a great idea. I'm sorry to hear about his mother, that has to be hard on both of you.

I also want to apologize for my negativity. I shouldnt have thrown in my "plan" to leave...

Honestly we have good days and bad and like traveler said...everything feels like a mess right now so I shouldn't be trying to make any plans for the future, besides healing and taking care of my son!

I hope things get easier for you. It sounds like with his mother passing he might just not have it in him right now emotionally to be there for you as much as you need him too. But time heals all wounds, so they say, so hopefully with time, things will improve! I sure hope so...for all of us :)

Shadow, I know exactly what you are talking about. I try to fight this as best I can by myself. I try to not talk too much about it or complain too much but sometimes I just can't help it. Lots of my friends don't call much or invite me out like they used to. I try to be strong around the house so I don't scare my 17 y/o daughter, it kills me to think that she worries and is scared for me. As someone mentioned, people just don't take Lymes serious and don't understand. They look at me and I know they are thinking, "you look fine" and assume I am over exagerating. I suspect that if I had a more well known chronic disease, such as cancer, MS, etc...., people would understand better. My problem was that I was sick for 4-5 years, if not more, before I finally got diagnosed. My pcp basically told me I was nuts and kept pushing anti-depressants on me. I even got to the point that I had to wonder if I was nuts??? So at that point, I think many people thought I was a hyperchondriac and still think that to this day. That is hard for me to swallow because they all knew me long before I got sick and never did I ever complain of medical problems. Oh well, it is what it is and I just have to keep fighting in hopes that eventually, I can have a normal life.