Hi. I don't recall ever posting to an online forum before but I'm not sure where else to turn. My wife and I live in a very rural area of northern PA where often a quality cell signal is a luxury, let alone a Lyme community or support group.
My wife was diagnosed with Lyme in August of 2015. I won't bore you all with her list of symptoms or the events leading up to her diagnosis. We have all been there and lived through that. She's been aggressively treated by a LLMD in upstate NY and has had some level of success. We are both in our mid 30's and have 3 wonderful children age 9, 6 and 2.
I'm posting today for somewhat selfish reasons. Because of my wife's health I have become the primary caregiver in our house. Before I always did the cooking but now I feel as if I do the cooking, the cleaning, the yard work, play with the kids, pay the bills, care for the animals, etc. And work a full time high stress job. To be perfectly honest, I'm burned the hell out. There's very little in my life that excites me any longer. I love seeing my kids grow and learn and hearing them laugh when we are all playing together is music to my ears. But besides that, Lyme has successfully taken my wife way from me. It's taken her desire to truly live away. And lately I've started dreading going home at the end of the day. As soon as I hit the door I can feel my blood pressure rising because I know what's in store for me...
I'm looking to connect with other spouses of Lyme patients. We don't have family that live close and I have very few friends due to the lack of free time and the guilt I feel about leaving my wife to deal with the kids when I do finally break free for a few hours. Therefore I know I need to develop some outlets for all these feelings before I absolutely self destruct!
Ideally I would like to hear from other men on their coping methods and how they keep their sanity. But more than that, I love my wife and family more than anything and I'm curious to hear from anyone that has had a similar experience and can share some perspective.
Thanks!!!!
Posted by Keebler (Member # 12673) on :
- Jared,
I'm not a caregiver husband and certainly can't formulate a response as well stated as your post.
Just want to say thanks for sharing about this - it's not all the unique, actually - sadly as many with lyme are in that same position, as are their families.
Your courage to step up with an SOS is admirable and surely will bring some kinds of connections.
Hold on. -
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet, Jared!
I'm not a caregiver husband either, just want to help.
The first piece of advice for you is when you come to the end of your rope...tie a knot and HANG ON!!!
You should contact the Lyme PA Support Groups. You might find others who are in similar situations. Here are links:
For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online on www.klove.com
God bless you as you help your wife and family. Being a caregiver is not easy - we burn out faster than the patient sometimes!
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posted by TxCoord (Member # 9204) on :
Jared, I am my wife's caregiver and I understand everything you feel and go through. As men, we are "fix it" folk and we have a hard time dealing with something we can't "fix".
Silver has suffered from the effects of Lyme and co's for over 40 decades although those effects have gotten worse these last few years.
Not to be trite or demean our vows, but I signed on for the long haul as well as she did (considering the numerous surgeries I've had where she had to do everything - which was detrimental to her health). "In health and in sickness" was not just some words to us.
Do what you can, when you can, while you can my friend. Pray for healing - for both of you as being a caregiver is not easy thing to do (as you are well aware).
Savor, remember, inscribe on your heart and in your mind, those days, hours, moments, when she does feel a bit better.
Document, document, document! Start right now with a living legacy for you and your children. Take pics - lots of pics. Record events she can and does attend. Record her voice, her smile, her laugh.
Cement those in your memory banks.
Then, as you can, when you can, take time for yourself. Even to go out and just sit in the woods or fish for an hour or so or go have a cup of coffee with someone.