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Posted 3/6/2015 3:11 PM (GMT 0)
I hope everyone's having a great Friday!  One of my most difficult challenges in dealing with my Lyme and Bart is the fact that I can't really face the reality of everything, or come to accept it for what it is.  Some days, I accept that these are my cards that I'm delt and I have to move forward, but most days, I live in the past, wishing I didn't have Lyme and Bart, wishing I got my Tourette's under control years ago, wishing I did not have the shoulder injuries and hip/back injuries I had; thinking if I didn't have the injuries, and only the Lyme and Bart (only being a big understatement), at least I would be able to hopefully treat that and be fine.  Now I think, well, on top of the Lyme and Bart, I have to treat the musculoskeletal issues, GI issues, and other problems.  I know the majority of us here have multiple issues, not just lyme and other co-infections. 

My question is- how does everyone cope with their illness?  For the veterans who are healed or are currently doing much better, what strategies have you used to come to grips with your illness?  Have you had really bad days/weeks/even months, where you think this is never going to get better?  Have you wished everything was different and you could have done so many things differently?  I know I'm wasting my mental/emotional energy on things I cannot change now instead of using it on positive things like healing, learning from all of this and moving forward in my life.  My mind has grown so used to living in the past that it's become a terrible way of living.

 

Posted 3/6/2015 3:35 PM (GMT 0)
If you engage in one way of thinking for a long period time, your brain shuts down the receptors for other ways of thinking and feeling. But you can retrain your mind. There are a lot of self-help methods for this, you have to find one that suits you.

Yes, it is not only easy but understandable to take a down-bound train of thought. This is a horrible disease and an often worse path back to wellness. But the future has great possibilities. The trick is to visualize it and work towards it.

Find an activity that you find engaging and do a little of it every day. Nothing too stressful and it should be something you can put down when you don't feel well. Get together with friends (again, nothing too stressful). Too tired to do anything? Scour the internet for cute pictures of kittens or lovely pictures of nature. Watch TED talks, they are very encouraging.

Progress might be slow, but congratulate yourself for every minute that you engaged in positive thinking!
Posted 3/6/2015 3:50 PM (GMT 0)
I feel your pain - I'm kind of stuck in a similar negative spiral lately. It really is a habit, though!

I like to do a grieving meditation once in a while when I feel things really building up - I think it was in one of Jack Kornfield's books but I'm not sure. You basically sit and bring your hands to your heart, and let whatever's causing you grief come to mind, and let yourself feel it, experience it. Usually I'll break into sobs for a while, but I always feel lighter and a little relieved afterwards. I think the problem is that we think and talk and resist so we're always dealing with our pain, but we don't just sit down and feel it (because it hurts!).

It's hard to be brave when things seem so hopeless - it's hard to take that risk and be positive and believe things will get better - but I find that the most inspired motivation to heal comes from the darkest places and hitting rock bottom.

I wish I had more concrete advice - like I said I'm going through it too right now. This constant loop of misery. Hang in there!
Posted 3/6/2015 4:33 PM (GMT 0)
I completely hear you bother.
I am going through the same thing right now.
I'm just about 6 months into this adventure and am having a hard time wrapping my head around the future. I feel like I've become a different person in a very short period of time.
I was as healthy as an OX a year ago.
A big part of if for me is that I very much need the feeling that I am being pro-active and doing something about the illness. I've begun the Buhner protocol for Bart and Lyme and also am seeing a good Nat Path doc (doing Vit C IV once / wk and Mistletoe injections twice / wk ). She is also helping me adjust my diet etc to boost liver and immune function etc.
I have seen no real improvements in my symptoms yet, which thankfully are for the most part joint and muscle pain... not much in the way of neuro issues. (yet!)
I have two young kids and a wife with MS. Her father also has MS. He just got a standard Lyme test done here in Ontario and was positive on the ELISA and negative on the Western Blot. We are going to test again here and also follow up with an Igenex test.
My wife is also going to get tested via Igenex soon.
Does she have Lyme?
Is so, has she had it for a long time?
Did she give to me?
Do our two young ones have it?
My world is swirling. One day at a time I guess.
I truly do believe that I can emerge as a better person from all of this but without a clear path it can seem rather daunting.
I hope you can find some positivity in all the madness.
Best,
Jason
Posted 3/6/2015 4:56 PM (GMT 0)
Having lived with these infections for most of my life puts me in a position where I don't long for my 'old life' but I'm certainly tired of being sick!!!

about the only thing I've found to work for me has been to correct my thinking each time I catch myself wishing things were different. It is what it is, and I have to be here, right where I am, not wishing for another life. So each time I start thinking of that, I find things in my own life that I'm grateful for and think on these things, find something enjoyable to do to distract me or whatever is necessary. Some days I had to distract myself all day long - this isn't an easy road to travel!!

Wishing for another life - whether it's a new life or the old one back - won't help us heal at all, so work hard to find ways to stop the negative thoughts and get more positive thoughts in your head instead. And try to stay away from the "what if's".
Posted 3/6/2015 6:28 PM (GMT 0)
Hey everyone,
Thank you everyone for all the suggestions! I think the biggest challenge and what I've heard from a lot of members is to learn to catch yourself when thinking negatively or in the past. I think learning to switch my thinking from negative to positive and living in the present will be a big step for me, since I've lived in the past, mentally, for most of my life. I know there are no answers for why we have this illness, or perhaps we don't need to know why. But I DO know that after coming out of this the other side (and healthy again!), there are so many positive lessons and elements we can take away from this. I think for me, one of the key lessons is acceptance of myself and learning to live in the present, not the past.

What are some of the lessons or goals you all want to learn from having Lyme/co-infections?>
Posted 3/6/2015 6:47 PM (GMT 0)
A.
Furthering the conversation between the two entrenched camps!
So much negativity doesn't help them or us.
The more we wail, the more they dig in their heels it seems.
Most of these docs who tow the line think they are doing the best / right thing.
We need to educate them in a freindly compassionate way IMO.
We have every rigt to be crazy about it, but that is just how you'll be labelled by them if we act that way. (ie members of IDSA refering to us as "Lyme Loonies")
I'll never forget when an Infectious Disease Specialist told me that I don't have Lyme because the ELISA test is pretty well 100% accurate.
I have a meeting again with him soon and I plan on politely providing him a copy of the Schmidt report (from the BC health authority).
Posted 3/6/2015 7:39 PM (GMT 0)
"We need to educate them in a freindly compassionate way IMO." Ditto. If we want to have them educated we surely do! As you said, otherwise they will just shut down and get defensive.

Am I mad about it, especially since I had to grow up with these infections and fight for my life because of them? Heck yeah!!! But I know that they won't listen if I'm mad, only if I can appeal to them on their level, with science.

My goals of things to learn from this? To be more compassionate, to be more caring and understanding of others, to 'stop and smell the roses' more often and appreciate what I have right before me without wanting other things. And of course, to value my health, no matter what state it's in and to do right by my body.
Posted 3/6/2015 8:32 PM (GMT 0)
Sometimes I think of how it used to be. Running up the stairs (man do I love the sensation of running...alas), going hiking, planingt my garden... doing the laundry lol. It's hard not to get angry sometimes. But this is how it is. I can either struggle with my self and deny it or I can accept it and find a new way of living, a new way to view things. I'm a big believer that all things happen for a reason, I never really appreciated what my body could do before this, and now I find I even marvel that my body can still do what it can under such pressure. And when I have that brief moment where the fog clears and I can take a full satisfying breath and understand what my husband just said to me I have to enjoy that moment. I'm sure there is much more to be learned from this, and though I wish that I was learning these lessons in a less painful and frustrating way, the truth is I don't believe that I ever would have. I would have been to focused on the past or the future to be in the now.
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