posted
My family and friend base is relatively small, so I don't really have many to look to for support with my Lyme. My Husband is my best friend but I know he is tiring of my Lyme, he'd rather not hear about it and thinks that my chronic lyme can be treated CURED in less than a year therapy. He just won't educate himself enough and seems to refuse to allow himself to get caught up in my illness. I think that he feels I'm seriously making up the fact that my knees and elbows buckle and how my whole body hurts so much. He can't understand why I'm not more optimistic about treatments being sucessful (meaning I'm herxing, not that I'm cured). I don't have anyone to talk to anymore and it's hard doing it all alone. I might not be able to keep working if I continue to changed and bring on more abx and continue to herx so badly. He doesn't want to hear that of course, but what about me? sorry just getting a load off my mind right now. "I marry you in sickness and health". My Son can have a bruise and it's a major event, I speak of my pains and I'm ignored. I can't help but wonder often if they would be better off without me around. Posts: 36 | From Arkansas | Registered: Feb 2012
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
quote:Originally posted by baboosh44:
BREAKING THIS UP FOR EASIER READING
My family and friend base is relatively small, so I don't really have many to look to for support with my Lyme.
My Husband is my best friend but I know he is tiring of my Lyme, he'd rather not hear about it and thinks that my chronic lyme can be treated CURED in less than a year therapy.
He just won't educate himself enough and seems to refuse to allow himself to get caught up in my illness. I think that he feels I'm seriously making up the fact that my knees and elbows buckle and how my whole body hurts so much.
He can't understand why I'm not more optimistic about treatments being sucessful (meaning I'm herxing, not that I'm cured). I don't have anyone to talk to anymore and it's hard doing it all alone.
I might not be able to keep working if I continue to changed and bring on more abx and continue to herx so badly. He doesn't want to hear that of course, but what about me?
sorry just getting a load off my mind right now. "I marry you in sickness and health".
My Son can have a bruise and it's a major event, I speak of my pains and I'm ignored. I can't help but wonder often if they would be better off without me around.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Unfortunately, this is a very common problem with people that have chronic illnesses. Sorry, you are feeling so alone. You can find support here where people are much more understanding.
I am sure others will come along with suggestions for you. Try not to despair too much and just focus on YOU getting well.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Have you looked for a LL therapist in your area to help you with all of this?
Posts: 1885 | From here | Registered: Jul 2012
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posted
Can you get to a support group in the area? You deserve some support. It's about your health, and your efforts to get better.
Ultimately, I think it's going to require your husband to understand what you are dealing with. It's only fair, since it's the truth. I agree with beaches' suggestion for family counseling.
Posts: 13171 | From San Francisco | Registered: May 2006
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Sorry Baboosh. It is such a lonely disease. And if your husband has been your best friend, it is like losing your best friend when he doesn't get it.
Have you tried to sit down together and watch 'Under Our Skin'? That really changed my husband's understanding of chronic lyme disease and gave him a better understanding of the struggles lyme patients face. Also, it might help to have him come along on one of your LLMD visits.
If you can find a local support group, that would be the best for you. Members may be able to provide support and lead you to a good therapist who is lyme literate. Check below for your area
Email [email protected] requesting a list of lyme literate medical professionals in your area. I received lots of good information from them (Tick Born Disease Alliance).
Posts: 2387 | From New England | Registered: Aug 2011
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posted
baboosh-I am incredibly sorry that you are going through this. I agree that a lyme support group might help a lot. You deserve to feel supported and encouraged right now. I don't know what I would do without five people in particular in my life right now. They understand me and I love them and without them, I simply don't know if I could deal with the pain and loneliness this illness creates.
Please look into a support group. My best friend had an eating disorder when she was in her teens and as much as I adore her and would literally lay down my life for her, I couldn't relate and neither could the people around her that loved her. She found that a support group of similar sufferers helped her feel understood and validated and it eased her anxiety and loneliness.
I ended up attending some support group meetings with her and came to a newfound understanding of her condition, which led to me being able to fully give her the support she needed. Perhaps over time, and with tools the lyme support group may be able to give you to help you talk to your hubby, he will change his perspective and give you the empathy and support you need and deserve. All the best to you, Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
I am so grateful all your support friends. I feel much better just knowing that others feel the same and are out there to communicate with.
There is not a LLMD Dr. in my State and the closest one does not accept insurance, therefore I can not go to him.
There is not a Lyme Support Group in my area yet, but hope to hear of one soon. Many cases are being diagnosed every day via my Physician who has Lyme himself and does his wife and six kids, isn't that something? I'm worried that his health and load at work and home is taking a tole on him.
I will check into these supplements that are recommended, but I'll tell you the cost of copays for my long list of meds and what supplements I do take are exhausting our income. I can't imagine adding new ones. I am taking some Hylaronic Acid (MSN) and Fish Oil but probably not enough since I get it at Walmart and take regular dosage.
Again thank you all so much for listening. Many HUGGGGSSSS
Posts: 36 | From Arkansas | Registered: Feb 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You don't need to take all those supplements at the same time...try each one and see if the pain improves.
When you try sytemic enzymes, be sure to increase the dose until you can feel the effects.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I often think that our country has come a long way in overcoming prejudice towards minorities, gays, women, etc.
But the chronically ill have probbly suffered more hurt than most, or as least as much.
It will be a huge step when we start seriously educating the public about chronic illness, so that people really "get it".
During the '60's, every problem was due to some unresolved emotion from the past. Even health problems could supposedly be traced to this.
And of course, that opened the door for more discrimination towards the chronically ill, who were just whiners and wanting attention and really just angry at their mother.
So I see this type of discrimination (also towards those living in poverty) as the next big social change that needs to take place.
Just think how much this could help our family and friends, if that kind of education was out there.
We all experience what you are experiencing, even from those who love us the most.
posted
It just takes time, and although you feel so alone right now, he will come around. At least my hubby did, finally. He didn't believe it could be as bad as what I was saying. The doctors were no help either, of course. He kind of thought my 1st llmd was a "quack" and our relationship suffered. I think the longer it went on, and the more he saw me suffer and HATE it myself, being SO frustrated, he finally decided that in all time he'd known me I had never lied to him. Why would I now? He actually sat down with my oldest daughter (his step) and explained to her that I would not lie about being sick and that they both had to start supporting me and believing me. She was just as bad at the time (being a know it all teenager) I thought for sure he was going to leave me, and I even told him that if he wanted to leave, if it was too much for him, I understood. He didn't leave though, and told me that even if I got in a wheelchair (which I was told I would) I would need someone to charge my chair, carry it around, or push me. SO, we've been fine since.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
Hi, and so sorry that you are going through this. I totally understand where you are coming from. When I was diagnosed in 2001, my parents and sister thought I was being a "drama queen" - which was what they had always said when I had physical symptoms growing up.
My LLMD that diagnosed me at aage 31 felt that I'd probably developed Lyme as a baby or toddler based on my symptom history. My mother felt like it was a personal attack on her since I'd gotten it (supposedly, according to her) under her "watch." She didn't understand that I was actually happy and relieved to finally have a diagnosis after so many years.
So, later that year they all stopped speaking to me. That left me with my then-husband and no friends in my area as I'd only lived here a few years and my health had been going downhill throughout that time.
4 1/2 yrs ago, my ex-husband left me for a healthy younger woman. He was tired of the added responsibility of my illness. Thankfully, I'd had periods of relatively better health during that time, and had made some friends.
When my ex left me, I had to start doing everything for myself, which I could not handle. Even during the times that my health had been better, I was able to feel better because he fixed most of my meals, shopped, and if I was having a rough day he would bring me what I needed to the bed so I didn't have to push myself too hard. He had lots of issues, and the marriage wasn't great, but he was a fairly good caregiver when he wasn't yelling at me for unrelated issues.
So, when he left and I was fending for myself, I tried so very hard to be strong and find a way to manage. I pushed myself so hard that after around 4 months, I had a total collapse and was bedridden for over 3 months. I've never been very well since. I've had ups and downs, but living alone is really, really hard.
Lately, I've been going through the worst period I've ever had. My immune system is attacking nearly everything I try to eat, and I can't find help anywhere. I'm afraid of dying daily, and afraid to try new foods because the reaction is life-threatening and I'm alone most of the time.
Most of the friends I made during my relatively healthier period have since stopped speaking to me because they get tired of my always being sick.
Since I've been bedridden this time, around 5 weeks now (but had been declining badly for a couple months before that), I've been really surprised at who has showed up to help me. Some who I thought were my friends have stabbed me in the back and told the world that I was faking it all. Others just ignore my calls and emails.
I am very thankful for the few who have been helping me, but I'm still alone most of the time and can't get out of bed very often or for more than a quick trip to the bathroom. It's exhausting just to do that.
As difficult as things were in my marriage (and there were some really bad things happening before it ended!), I've been wishing lately that I'd appreciated my ex more. I also have been trying to work through a lot of anger and sadness about him leaving me, and about him withholding love from me while we were together (what we typically argued about). It's a mixed bag.
One of my good friends suggested a couple of weeks ago that I contact my sister, after 11 yrs of her not speaking to me. I need more care than I can get from friends, and the few people I've tried to pay with money I don't really have haven't really worked out for the most part, except for one who has become my main caregiver, but is running up my credit card to pay for. I finally agreed the other day.
She sent her an email that I approved, and a reply came back today. My sister didn't agree to come help me (I'm in Charleston, SC, and last I heard she was in the CA SF Bay area) but she didn't say no either. She asked for permission to have my doctor's contact information and to have me authorize her to speak with them. I'm pretty sure that she is asking for this because she doesn't believe that I'm really sick again.
I don't know what would even happen if my sister does come, and am pretty scared about that. But, I am that desperate at this point. It really sucks when people don't believe you, and it sucks to be alone and helpless and scared all of the time.
Hang in there~
Jenni
Posts: 18 | From Charleston, SC | Registered: Oct 2011
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