Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
I am very distressed right now, and I needed to come here to discuss something with those who would understand. Clearly, my husband does not, and he has been serving to agitate me. I'm shaking so much.
I talk to him a lot about what I'm considering for a career. I talk about the possibility of doing this, or that, and what it would be like. How I want to learn about it and what not. I often buy books about careers that interest me, and look into schooling. I know that I cannot go forward with schooling now, but it gives me some sense of meaning, some purpose, something to do while I suffer through treatment. Something to think about doing WHEN I GET WELL.
He kept putting the kibosh on this today, kept talking about reality and my focus, and all this other bull-you-know-what. That's all fine and good, but even when I told him what I need right now, why this is important to me, he just kept at it.
Here's the thing, and I explained this to him, too. Maybe YOU'LL get it. Somehow, I think you will. I've been sick for 20 years. I have co-infections, too, and I have Bipolar Disorder complicating matters. I've always been career-oriented, ever since I was a little girl. I've been a high-achiever, with a lot of drive, intelligence, and creativity. (I'm not trying to toot my own horn here. It's just facts, and I'm grateful for the gifts I've been given.)
I'm approaching midlife, and I still don't have a career. I know I must wait, but it gives me something to think about while manic, while stuck here in this mobile home in the woods in need of much repair. I spend most of my days alone. My husband leaves for work before I get up, and he goes to bed at 8 p.m. (long commute). I haven't been feeling well, and I haven't had the brain capacity, for social phone calls of late. So I'm quite isolated.
I've heard the reports about how after this many years sick, prognosis is iffy. But I choose to believe that I will get well, or at least better. I HAVE to believe this, or why am I fighting?! I have to focus with hope.
Just like with the Bipolar. I know that medicines can be problematic, and may have to be changed from time to time, and that I may need hospitalization at times. But I have to focus on the hope. Do you know what I mean?
I've been on SSD since 1993. I've worked part time, sporadically, and a little full time, since 1992. I haven't worked at all for four years straight.
I told him that what he needs is not what I need, and he's usually supportive. He seems to have gone off the deep end lately. And since my moods aren't stabilized yet, it makes for some lovely interactions.
I have to believe I'll get well. And my PA believes I will. And I'm actually considering becoming a PA! Please, SOMEONE cheer me on while I consider this. I feel so lost. I know the schooling is long, but I really think I want to do it WHEN I GET WELL.
I'd love to hear your stories. I'm sure many of you, too, feel isolated and lost. I'm sure many of you are career-oriented and want very much to start one, or get back to one. I'm sure you all want to hold onto hope.
Thanks for listening to me. I am so sad.
Steph
P.S. After all this, and my breaking down and coming in here to type this, my husband asks if he can check his email first.
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Oh, Steph. Some of your post is what I've been going through with my husband lately.
I went to work 6 wks ago at my hair salon as a receptionist. It was a temp. job to help while someone is on pregnancy leave. I knew I only had to make it six week committment. Great opportuntity to see how much I could handle.
Like you I'm (was) a very career minded person. I had worked my way up corp. ladder with large #1 grocery chain. I became ill in 99, but I wasn't going to let an illness stop my next two promotions that were coming my way. So I worked sick for 2 1/2 yrs. One day 4 yrs ago I hit the wall. God must of said "I will stop your self-destruction." Employer would only wait for 12 months and then they sent me a goodbye letter.
Now I'm searching for what my next career is going to be. I'm still not able to handle anything more than 3-4 hrs a day, 3 days a week. But I'm thinking ahead and dreaming what I'm going to do next. My husband has brushed off some things I've said I'd like to try. grrrrr!!!!!
Last night I started talking about becoming a small business owner. I called a family member that has been very sucessful at his and picked his brain. My husband made a comment and shook his head. I went off. I'm trying and thinking things about my next career.
Had to tell the man to stop being negative and start showing some support for my dreams. I have no doubt I will get well enough to be a part of the world again and I'm smart enough to do anything I put my mind to. There!!!!! Made him feel bad. Good.
I know one thing, corp America will never benefit from my abilities again. So Steph, see I'm dreaming with you. Our dreams will become our reality some day. Go girl!!!!!!
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi, I understand the need to have a role to look forward to.
I used to wk as a special ed teacher before I got sick. I don't think I could do that physically and have much of a life. So I am trying for a counseling degree. I figure that if I don't feel good or have energy I can sit there all day and not have to move. Actually I am, of course sincerely interested in helping others.
I am working on starting a program for a degree online for counseling. You can take 6 courses online before you have to start attending classes. I have been hoping to start in Jan. and your post has given me a boost.
I think its great that you have hopes and ambitions.
posted
Hey Stephanie....I've had lyme for nearly all my life. YOu CAN and WILL get well! If I can, you can!!!
From what I thought I've read about you, you are only now really getting the meds you've been needing. What I mean is NOW you can begin getting well!!
That isolation is a real killer. I know when I was going thru treatment my husband was working very long hours. The only way I survived was by getting onto lymenet every day.
Some days I could only sit up for a few minutes at a time. I didn't care....I would use those minutes to talk to others here and ask questions.
It was definitely my lifeline!!
If you ever have the chance to go to a garage sale or buy some books online....buy self-improvement books, motivational books. It will help you more than you can imagine.
You hang in there and keep plugging away. Men are kinda block-headed at times. We understand and you can come here anytime and talk to US, OK!!??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
Wow! Good for you for going out, bringing home books, and moving forward in your life. Your attitude is excellent. You seem to have drive, ambition and determination. You will get well, and you won't settle for anything less. That said, your husband seems to be dragging you down while you are struggling enough as it is to rebuild your life. I wish you all the best. keep reading, learning and fighting, and don't let anything or anyone stand in your way, you can do this on your own!
Keep this quote in mind "Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you, too, can become great." Mark Twain
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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
You people are swell. I deeply appreciate you, and thank you for lifting me up in my time of need.
I have to spend more time here. I am in the quadruple digits now, but nowhere NEAR Lymetoo in posts. I'm running up to tag you, Lymetoo!
Pam: I'm so sorry that you have similar struggles with your husband. I don't know about your beloved, but mine is usually supportive. He just gets so thick-headed sometimes. I think THEY think they're actually helping us by squashing our dreams. Giving us so-called "reality checks." Phooey! Sometimes, I think it's their "I have to fix it" fixation.
We've all suffered losses, and they can be so painful. But we do need to "keep our eyes on the prize" (I really hate cliches, but it fit). I'm thrilled that you're considering your next step.
I believe our dreams will become reality!
I love that you have that inspirational Winston Churchill quote as your signature. And it reminded me that Winston Churchill was also Bipolar!
Char: I think you'd make a fine counselor, based on our communications. And I'm honored to have given you a boost!
I know you want to help people, not just enter Counseling because you could spend more time sitting. It is crucial to consider both what we want to do and what we COULD reasonably do, though, so the sitting issue is important, that's for sure.
Lymetoo: Thanks so much for your cheers and reality check. Yes, if you can, I can!
You're right about my treatment. I'm only now getting up to speed with appropriate treatment. And it's slow going, but I'm getting there. I do know that I won't get well overnight. I've been sick for so long; I'm patient enough to accept that it will take a number of months, at least, to see real improvement. But I'm not giving up. It's what got me this far through many ponds of ducks!
Hey, I love self-help books! I'm an avid reader, mainly non-fiction.
And men certainly can be block-headed. I think of Lucy from The Peanuts. Remember how she would say, "YOU BLOCKHEAD!"?
WildCondor: I can't tell you how much I appreciate your kind words and encouragement. And I love that quote.
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Steph,
Just hold onto your dreams!
I do an affirmation list. It's something I do quietly, about once or twice a week.
I have a notebook, and I list things I'd like to see in my life. First on the list, of course, is my health. That comes before relationship or income.
I have some things on the list that are very practical and probably do-able and other thinsg that seem a little far-fetched. But I figure you never know...
You could do that, Steph...just have a notebook where you record your dreams. That way, you can keep them alive, no matter what's going on around you!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Andie, that's a wonderful idea!
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I want to inject something here just to keep it in mind.
I have lyme I hunted all the time I work in the woods have had lots and lots of ticks on me in me and just barely attached also. Had lyme since 1988 how I know symptoms fevers etc.
My wife on the other hand who hunted once in area where there were not any ticks at that time. Also has lyme.
I believe she got it from me.
STD? probable.
Something for wives and husbands to keep in mind. When a spouse starts acting differently.
Possibly infected also.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Steph, yes my husband has been a supportive spouse. I shouldn't give the impression he's not. He's done alot of reading on lyme and he has a pretty good idea what's going on.
Summer before last he came down with lyme flu-like symptoms and after 3 weeks of going down hill he went to my GP and I went with him. I told my GP (lyme literate) this is the list of symptoms, it's lyme disease, heavy abx NOW. He took abx for 6 wks & I made him do rife treatments. His symptoms disappeared in the exact order they came on.
He told me during that sick period, "How you have lived and felt like this for 5 yrs, is beyond me. I would not live like this."
But sometimes we forget, especially when we lived it for just several weeks. When it goes on and on and on, it makes a lasting impression.
We are blessed, because some of our lyme friends haven't had support at all from their spouses.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Treepatrol: You know, my husband probably has had Lyme, etc., for years. We had both lived in NJ, and he camped frequently. Not that THAT always leads to Lyme, but it is high risk.
His symptoms are worse, but he refuses to get help. I will say that when I was at one treatment center (and I use the term loosely), where they only treat briefly with a positive PCR, he did see a doctor and get tested. The series of tests were negative, so now he's REALLY written it off, despite knowing better.
To be fair, he has expressed fear that if he had to be treated and out of work, we'd be living on the street. As it is now, we are paying for so much, including medicine, on credit. He said he's not so bad off; we need to focus on my treatment. Still, I know how it can progress....What can you do? You can lead a horse to water....There's a cliche again!
Pam: Yeah, we are blessed.
I'm so glad your hubby got treated!
I know that things are more strained here right now because my moods are out of control, and he's been sicker.
One day at a time. Clinging to the hope.
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Steph-
I was just going to suggest what tree just did, that your husband has lyme.
My husband has lyme and babs too, probably from around the time I met him when he moved to the east coast. He was gradually getting sicker while I was pretty ill. I don't think we ever knew each other well.
I finally got him to go to the llmd. After a couple of heart to heart talks about his grumpiness and our future we are getting a long better. We are well enough at this point to laugh about the times of bad neuro sysmptoms and joke about being well and meeting the healthy people that neither of us has met!
Other days I just have to walk away Steph. Because I have been there, I'm more patient than I ever thought. He is gone 12 hours a day and sleeps 10. I sometimes consider this a gift.
Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Oh, Mel. I wish I could convince my husband to get evaluated properly. Maybe someday.
Yes, I know about walking away! It's harder for me right now. My moods aren't stabilized yet. Actually, I was rather calmly trying to explain my position, but he kept insisting on hammering away at me.
Today's a better day. We just do what we can, huh?
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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