posted
I have been talking with my husband and psychologist about the fact that for the last 3.5 years I have simply survived.
--Trying to get kids where they need to be making sure people have food to eat between bouts of crying and living on the couch.
Even with those things I have been given tremendous help with from friends, neighbors, etc.
HOWEVER, now that I have a diagnosis and hopefully moving in the right direction with treatment, I need to start building somewhat of a life.
I use to be very active. I mourn my old way of life, but need to build a new one.
So my question is. . . What do you do to 'live' and not just survive. What brings you joy, but is still manageable with this horrible disease?
I'm thinking of learning to play the cello since I've alway wanted to, but never took the time to do so..... Music therapy is good anyway, right?
Anyway, just looking for ideas....
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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surprise
Frequent Contributor (1K+ posts)
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posted
For me, the grief and anguish was real (mostly around my daughter, who had congenital Lyme disease, extremely difficult path for her)
and I learned to 'feel the feelings' when it came up. Couple of times that meant a good long cry.
BUT, I learned in order to go on, I had to watch my mind and thoughts.
I had to apply gratitude. Flip the pattern. Instead of poor pitiful me, look around and see what is right. If that means writing down a list of 10 things to be grateful for- do it.
If I caught myself swirling with anxiety, stop deep breaths and repeat mantras back: I am safe, I am loved, all is well, the Lords Prayer, etc.
I walk the hills in my neighborhood and marvel at the trees and flowers.
Find movies or TV shows (pleasant ones) to view w/ my spouse. Learned to bake gluten free items. Stopped watching horrid news stories.
Life does give shifts and changes. It is always evolving. It never stays the same.
It is a conscious effort to stay positive. The more you practice it, the easy it becomes.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I tell myself how lucky I am every single day. Lucky that I've a diagnosis, that I am getting treatment, that I can still work.
Some days are harder than others and I let myself be angry, sad or frustrated.
I repeat a funny quote my younger brother sent me. It says,"This too shall pass. It may pass like a kidney stone, but it shall pass." That usually makes me laugh.
I do not read the news. I take walks when my body lets me. I visit my neighbors' dogs and cuddle a lot with my cat. I spend time with my spouse watching comedy.
Posts: 49 | From CO | Registered: May 2016
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ive done what those above said for many yrs and have written similar posts in the past.
Im older more tired and kinda losing hope of ever being able to live. Esp since i became so reactive to mold and chemicals @nd have so much trouble going any where and bein : wuth normal ppl.
Sadly i have sold my kayak and other things that motivated me to get better.
I watched my mom die from lyme and i saw wgen she ciuldntwad and type and follow movue and tv so i allow myself those activitues knowibg there will be a time i cant do them.
My biggest s@dness us not being able tointeract with two new grandchildeen. Im trying to figure out creative ways of making this happen
You sound young tho.my Advice is figure out what is really important and do that sometimes work is not important sometimes time with children and fulfilling some of your dreams is what's important .do it while you can
....................................
(breaking up the post for easier reading for many here)
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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hiker53
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posted
I thank God every day for giving me a new day. I try to look for the little things that can bring joy--sunsets, flowers, a student finally understanding what I am trying to teach.
I know it is not easy as I had to give up all my sports (except walking and now I use trekking poles for that). I gave up going to movies due to the stimuli, but like watch movies at home and I watch sports on T.V.
I would rather get together with one friend and talk than go to a party.
If you want to learn to play the cello--go for it. Rent one first if you do not own one, so if you find you do not like it you are not out the money.
Many blessings to you.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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WPinVA
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posted
I try to think of others who are less fortunate...
Posts: 1737 | From Virginia | Registered: Aug 2011
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me
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Member # 45475
posted
I journal, create art, come to this site, and let myself feel the feelings. That being said, feeling the feelings when you feel completely hopeless can become a downward spiral, so I say that with caution.
Look at those who are getting better and also the less fortunate. Try and be thankful for small bouts of progress. Try and be thankful that you are able to see a LLMD and get treatment, while many others can't.
Try and listen to those who used to feel completely hopeless, convinced that they were going to exist in misery for the rest of their lives.
I was there. I was hopeless. I prayed to die nightly. I am now hopeful. It takes time and is a process. And, you have us to help you through this.
You can send me a PM anytime, HW88. Just know that I'm having some difficulty with PMs, so if I don't respond, that is why. Lymetoo has been working hard to help me get the PM situation fixed. Keep fighting.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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lpkayak
Honored Contributor (10K+ posts)
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posted
Thru this whole journey it has always been clear to me there are others worse off.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I'd say think about what you'd miss doing in life if you didn't do it - something that feels like it belongs to you - and then start to think of ways to include it in your life. Whether that means you participate in it, or you observe it being done, etc.
And we modify the activity to be something that we can handle, whether observing, or doing in a smaller way.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thank you everyone. I have a gratitude journal that I try to write down the small things that are good in life each day.
I feel completely useless at helping others. But try to write a note to friends having a bad day.
Thank you for all the support. Me, I'm going to hold on to what you said--look at others that once felt completely hopeless.
Robing I appreciate you pointing me into looking for something I'd miss in life and then modifying it.
I think I will begin learning the cello.
Thank you everyone. One day at a time and hopefully I will see some progress soon! Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
Yes, good idea to start learning the cello - it will be something fun to do - just watch your physical needs as you do it, so you don't overtax your body.
I missed traveling, so I have put up travel pictures in my room for the last couple decades.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Robin123, I miss traveling also... Maybe I will start doing that also. DECADES.... may I ask your story? Have you been on treatment for that long and still not well?
I hope you get to travel soon! And send me a picture.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
HW88, I went undiagnosed for 25 years, and early on, I started my "travel" rooms, which allowed me to continue to "see" the world - I still do it, seasonally. I've even made art from time to time for the rooms, so done something creative as well...
I found out 10 years ago when a nurse in Virginia told me online. When I tested positive, I put myself on my own antibiotic since I didn't feel like going through more allergic reactions trying to find one, and it worked! So I just used what was left over in my drawer - it happened to be clindamycin.
There was a funny story at first. After a week on clinda around the clock, I was in NO pain, after 25 years of fibromyalgia!
I had a sister who was being honored for her work, so I called her and said I thought I could come because I wasn't in pain, so I made a last-minute one-way flight reservation.
And guess what happened to me at the airport? I was pulled aside because of that last-minute one-way reservation, and put through all their terrorism tests, like puffs of air being blown all over me to see if I'd blow up if I had any explosives on, etc,
and I was just cracking up so hard, I couldn't stop laughing, because this was my welcome back to the world! Find how to treat Lyme, and be treated like a terrorist! I must have been the happiest little terrorist they ever saw!
So anyway, regarding treatment, the trick is to find what works for each of us, like have your doc test you for all kinds of things.
A big part of it for me was finding out I tested low in thyroid, going on Armour thyroid and then I felt present in the world again, since that picked up my metabolism.
Ah, you're from Cincinnati - that's where my grandmother was who I used to visit! Yay! I know the zoo, UC, etc...
Posts: 13116 | From San Francisco | Registered: May 2006
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TF
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posted
Before I was diagnosed--that took 10 years--I could only stand for 1-2 minutes and only walk about 2 blocks. So, for vacation, my husband and I would travel somewhere. He did all the driving.
Then, when we got to our destination, every day he would drive us around to see what we could see.
We like wildlife, so once we traveled to central Pa. and saw moose that were just in peoples' yards or standing in the street, in groups in fields, etc.
Once we traveled to Rangeley, Maine and then into Canada. There was a lot to see on that trip.
Sometimes we traveled just 4 hours from home and rented a condo for a week.
By us driving around every day, I felt like I got to see the area. I would get out and walk a little if there was an animal to see or a beautiful view.
These were our vacations for many years.
So, you do what normal people do but just modify it to meet your capabilities.
My poor husband lugged me around like a sack of potatoes for a long time. The vacations were very good for me and he enjoys traveling, so he was happy too.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
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posted
Wonderful replies. Nice to hear about the fun things you all can do.
I am trying really hard to think about what I specifically do that would be considered fun. And nothing comes up.
Something must be wrong with me. I don't have an answer. My guess is simple survival and ongoing Lyme related projects takes up all of my time.
Tincup
Honored Contributor (10K+ posts)
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posted
OK. Got it when I saw the title of the post again.
Some of us still have a "living mode". That is when fun can be had.
Others are simply trying (struggling) to survive. Hang on. Make it to the next day. Feed thyself. Do the minimum basics each day if possible.
That's where I guess I am, as I suspect others are too. I do enjoy hearing about others lives, living mine thru them, so keep up the fun stuff, always.
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Tincup, You gave me some great ideas a while ago, like name each potato in a sack of potatos. Paint your nails different colors. Just finding ways to find humor in the little things and making the mundane non- mundane. Oh, and you always recommend ice cream as the cure all for Lyme. Don't forget that!
HW88, I like that you do a gratitude journal. I did that along with putting down everything I felt onto paper. No holds bar--no self-editing. It was very cathartic for me. Maybe get your feelings out in a journal and then do your gratitude journal so you end on a good note?
I also made a flash card ring of affirmations, such as, I accept my situation and know this is temporary; I am happy and healthy; I enjoy the little things in life. I read them every morning to help set my frame of mind
HW88, Remember, you just started treatment. It took me several months to see small bouts of progress. You will get there. Share your thoughts with our LLMD and see what he says. He is not one to blow smoke up your tookus and make empty promises.
Again, I was completely hopeless. I'd lost what felt like myself and everything I loved. I am getting myself back and able to do things I love at times. I'm going to give you advice I often need to take myself: Try and be patient with the process. Be thankful for what you do have. Hugs.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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me
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Member # 45475
posted
Yes, HW88, you are right. Sometimes it is really tough to see the good side of things during this, especially when Lyme and cos have gotten to the brain. I try to do my affirmations every morning, and it makes a difference now.
It does make a difference if Lyme has not taken over your brain too much. I had difficulty remaining positive when the bacteria was still heavily, heavily in my brain. Now that the bacterial load has been reduced, I am able to be much more positive.
When the Lyme and cos were really effecting my brain, I saw a therapist who helped me through it. Fortunately, she works with the chronically ill, so we were able to do many of our sessions over the phone. So a counselor is another idea.
When I was getting dressed, I was listening to music and thought of you. I'm a huge music buff, and just listening to music can change my mood ( and research shows it does, too).
So, another idea is listening to music that "speaks" to you.
Also, dang, I had a good suggestion, but I just forgot it. Thanks, Lyme. Haha. Well, that brought me to think of trying to find the humor in situations.
Oh, I just remembered! Dudley Evensan has a CD that has affirmations in it. They are labeled with things like being grateful, or a new day, finding peace or whatever. I listen to it in the car sometimes on a difficult day.
Another thing: I don't know if you are religious or spiritual or neither. I pray to Our Creator, which I believe encompasses all Good Gods. If you are religious in the more commonly accepted view of religion, praying is helpful.
If you are not religious as defined in the more commonly accepted view, meaning you don't align yourself with one God/religion for the purposes of this "conversation," you could try praying to Our Creator, whatever that may mean to you.
My God is good and wants me to do good and make the world a better place. He or she wants to ease suffering and see others do good and make a positive change in the world. Your religion doesn't have to be strictly defined if you already don't align yourself with a religion. So, not knowing your beliefs, I want to put that out there for you.
You could also try and go to a church if that is not too taxing on your body.
I thank God for ten things before I pray for others or myself. A lot of times thanking God brings a smile to my face.
Keep fighting!
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
ME, I just adore you. Thank you for the support and love.
Lyme has CERTAINLY gotten a hold in my brain. Most of my symptoms are neurological. The depression and anxiety are REAL.
I'm working with a therapist and doing my best to be positive. She is the one that suggested music as therapy for me since I enjoy it.
I also have to plan something that is a weekly 'commitment'. It doesn't have to be big. I've shunned any commitment for the last year at least. Starting to build a life even though I feel horrible.
A lot of it I feel is Chemical though.. a bit out of my control. I can feel it come on, but can't do much about it.
I am very religious. It seems as though some days I pray all the day long in my heart.
I actually feel like God directed me to this site and all the great people here. I hope that once I am in a better position, I too can help people have hope.
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Awww, why thanks, HW88. That means a lot to me. I can tell you when the Lyme and cos were really bad in my brain, it was very difficult to apply techniques that I worked on with my therapist. I'd try every technique and my brain would just immediately shut it out.
It was totally a chemical thing. The therapist said I was doing everything and more that I could do, and that meant that my biochemicals were off. Of course, my docs agreed. People would say, be positive, pick your chin up, and I wanted them to know so bad that I was TRYING.
It was a dark time. As in dark dark sad sad tears tears tears. BUT, that has changed a lot. Keep fighting. You've got a good LLMD. You can always pm me, but know my PMs are kinda messed up right now.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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