kam
Honored Contributor (10K+ posts)
Member # 3410
posted
From the beginning when this hit hard and fast, my mind would take mini vacations.
10 yrs later, I still find that my mind goes to places I have traveled....outdoor places:
the beach
the redwoods
yosemite
backpacking in all 3 mtn ranges
backpacking and camping at Havasupai Falls area
swimming in a lake in the Lassen national forest...had the lake to myself...wonderful
etc etc etc
I find it interesting that I don't miss working although I did at first. And I do miss feeling like I am making a positive difference in the lives of others.
But, I feel that will come again...somehow...once health improves enough to do so
I don't really miss people. I do miss some friends of mine who helped me when I first came down sick and are living in a house that his parents built and on a ranch.
it amazes me what they do in their 80's
I do know once I am well enough to be around people, I will choose can do people with a positive outlook.
I miss having a car that I can get in and travel, the health to do so, and the money to do so.
I think I could travel if I had a reliable vehicle that pulled a trailer and had a way to transport my power chair.
I could travel a bit and then pull into a campgrounds and rest up before I hit the road again.
So, what about you. What do you find yourself missing??
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I miss ME, the person I was before lyme. Oh so many things I took for granted.
Being able to work. Going shopping. Going to Church. Laughing. Cooking and have Family and friends over. Traveling Doing for and helping others. I miss people, I was always a people person . Most of all I miss not being able to go and do with my grandchildren and keeping my great grans. Miss money, no work, no money. Miss my independence I miss the way I use to look, I don't even recognize me.. my skin, my hair, my glow that I once had . Can no longer go to a beauty salon due to MCS plus not feeling up to going. Miss waking up and getting out of bed with a list of things to do and able to do.
I could go and on but will stop here. good post.
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I can relate to all of the above...I was thinking about how I miss my confidence too and self esteem and problem solving skills
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
James1979
Unregistered
posted
I miss my good looks. It must have been an entire hour since I last saw myself in a mirror.
Just kidding, guys.
I miss eating Ezekiel bread. I think the first time I'm able to eat that again, I'll probably pass out from being so happy. I'll have to put pillows around me beforehand to break my fall.
IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
being the guy that could.(:
now, ask what good has this done for me ?
Humbles me and finding the limitations to my body and mind...with God's Hand. encourages me to take best care i can to this Temple God has provide me to walk this earth in.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I miss -
being able to work and pursue a career
being able to work on my art
being able to have friends and family visit
being able to help my family and friends
being independent
sitting upright
eating with a fork
standing for more than a few minutes at a time
watching movies listening to music
having the curtains open
soap
wearing daytime clothing
being able to have new things come in the house
leaving the house and being in the world
sense of safety is gone... the wrong mcs trigger could take me out fast
being able to walk from the couch to the bathroom without the aid of walls.
posted
There is so much that I miss, I'm not sure where to begin...
BUT, first and foremost, I miss good food and good wine..!!
Good friends..having an actual life. I miss being happy and feeling good about myself and feeling beautiful.
I miss my old personality--I had (still have, somewhere in here) such a good sense of humor and the ability to relax and enjoy myself. Seems that I'm just crabby, irritable, uptight, depressed, and aggitated every day now.
I miss my brain..I hate feeling in a fog so often. I don't feel very smart anymore.
I miss having the energy to do whatever I want whenever I want to do it..
I miss being able to sleep like a baby all night long without the help of sleep aids.
I miss waking up and feeling rested and thinking that I have something to look forward to.. now every day is pretty much the same and I don't look forward to much of anything.
I miss the old me...so much!!
Sorry..depressing reply, but true. Good to vent.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I so relate to all this.
I miss being active in my children's lives, and I miss my son who can't live with me because I'm too sick to care for him.
I miss all the little, everyday things that used to be done without a thought - a full day's work, for instance.
When I was a teenager, I would get up early, do chores all morning, put in hay all afternoon, do more chores, and then go swimming in the pond. Next day: up and did it again. I was slim, strong, and able and took it all for granted.
I didn't necessarily like living on a farm back then, but what I wouldn't give to go back to that life now! And boy, was my mom a good cook and we ate like kings. I didn't realize how hard it is to get a good meal on the table.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
posted
I miss family and driving to stay with family. I miss being around friends . I miss working tons. I miss going to church. I miss cleaning my house,believe it or not. Ha. I miss walking in woods. I miss walking anywhere, feet hurt. I miss going to the store. I miss going to ballgames. I miss my balance , memory, having no pain. I miss sleeping at night. I miss sleeping at night and feeling rested. I miss fishing. I miss sitting upright for any length of time I want. I miss running. I miss being around people. I miss being able to help my husband do work around the house. But, I am thankful for what I do have.
Posts: 211 | From In my house | Registered: May 2007
| IP: Logged |
posted
After over 30 years of this it's hard to recall what life was like before. I am so changed by this experience and it's not all bad. I have learned to appreciate the smallest of things.
I loved to travel and planned to do much more of it, so I guess that is what I miss most. I wanted to see the world.
I miss being able to plan anything.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
My life back the way it was.
-------------------- 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.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I miss travelling with my husband. I miss being sponteneous, deciding to just take off for the weekend. No pills to pack, no worries. Those were the days.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I miss being able to plan to go somewhere and not worry about a flare, herx, etc.
I miss being part of something. I don't miss the friends I thought I had. Lyme can cause people to scurry off. I am truly blessed by the few that stayed.
I have learned more than I have lost. That would be a good post, if it hasn't been done...other than the medical stuff, what have we learned in our life from Lyme...
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
posted
This thread made me cry.. Indeed to everyone.
I may or may not be dealing with Lyme.. but I relate to all the ache for what was or what could be.
Posts: 6 | From Washington | Registered: Aug 2011
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
This morning I miss not being able to drive for longer than 15 min on a good day. I use to like to just get in the car and go exploring or go for a drive in the country.
Going to see if I can read what others wrote now.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
Just going outside without wondering if I need a hat, long sleeved shirt, gloves, pants--I've been on "cyclines" for 6 months. Also, going outside without worrying about bugs, ticks, etc.
I also miss gluten. The list of foods is long, but right now, that's the one I miss the most.
Posts: 447 | From Vermont | Registered: Jan 2011
| IP: Logged |
posted
I miss having energy to burn. I miss running up the stairs two at a time just because I could. I miss being able to cycle---I was planning to cycle across American when I first got sick. I miss the feeling of being fit and able to meet any adventure head-on: hiking, biking, and climbing.
I miss exercising hard. I miss feeling strong and vital. I miss the sense of thrumming life force inside me.
BUT....
I have learned a lot, too. Having to sit still means I have the time and space to listen to the 'still small voice' within. I am closer to God. My world has gotten very small, but in some ways, it has gotten deeper.
It is a journey, and I intend to stay as open and deeply involved in life on this leg as I was during the expansive, active part.
I don't know what's next. I'm scheduled for a biopsy of a suspicious lesion on mammogram next week, just as I have started abx for lyme and bart. I can't imagine having to go through cancer treatment at the same time as this, but if that is what is to be, then so be it. I will deal.
It's humbling! Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Not able to read what others wrote yet but hope too. This morning was one of those times I get frequently....a little voice in my head yearns to go home.
But, where is home? This started 10 yrs ago when this hit and it continues today. I want to go home.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
I can't say I've lost anything near what anyone here has physically, other than my strength and energy. What I miss the most is the peace and serenity I got from going into the woods and just sitting or lying there, watching and listening.
My love for being outside, going to the river, or just walking in the woods. Laying on the soft grass in my backyard on a nice day or night and watching the clouds or stars.
It's very simple, I never considered myself the outdoors type. I never realized how important it is to me to experience that from time to time until I was introduced to ticks and LD. Now I am scared to death to even walk through the front yard, cut through the grass to the playground with my son, allow him (when he's older) to spend his days playing in the woods in a tree fort; going to the river; or just walking through the woods to places he's never been with a friend exploring as I did as a child.
Some of my fondest memories of my life was from times I spent in the woods. I will not be the same and I dread the day my son discovers the things that I did when I was growing up.
I feel like I can't rob him of this, I have to just bug spray him and dress him properly. But I remember my mother telling me to wear long sleeves and pants when I played in the woods... T-shirt (maybe) and shorts is what it ended up being.
On the other hand I feel like I have to protect him, there are so many other things in life that a TBI can rob of him. My first step is moving out of this endemic area, hundreds of miles away where I spent my childhood. I guess in time I'll see how I'm going to handle it, probably just curl up in the fetal position and cry until he gets home then do an alien autopsy checking him for blood suckers when he gets home.
Posts: 80 | From US | Registered: Aug 2011
| IP: Logged |
quote:Originally posted by searching4truth: I miss ME!
Sorry for the double post, I know it's bad bad bad. I just had to quote Searching4truth's post.
This is the most true statement of all, I think anyone with LD can agree.
From the loss of physical ability, mental ability, relationships, physique, looks, habits, hobbies, and an endless list of other things to include simple pleasures that the average person can indulge on a daily basis and not give it a second thought.
We are prisoners to this disease, the treatment, and in general the lifestyle. It is a lifestyle, one that you were forced in to by no wrong doing of your own. The only wrong doing is by the ones trusted to protect us out of their own greed and negligence.
I'm sorry to be negative, but it's true. There are no incurable diseases, just diseases that stretch beyond our scientific and medical capabilities. The sad part is that I believe if they would put a fraction of effort in to the research of LD that they put in to curing baldness or developing new and improved Botox I think they could find a cure. The sad truth is that nothing is being done except by a handful of doctors dedicated to helping people that are treated like criminals.
It's amazing the advances made by doctors in their basements over the passed twenty years, imagine if they were provided a lab, modest funding, approval, and a little bit of time.
I think the figure is 2% of the population control over 50% of the world's wealth and a few of those 2% are the roadblock that prevent us from having normal lives again. At least it's for a good cause, I can't imagine what life would be if one of the doctors of the IDSA, the drug companies, or the insurance companies weren't driving toy cars that cost twice as much as my home.
Stay strong everybody, I have faith justice will eventually prevail and we can be rid of this filth once and for all. It's just a question of whether it will be in time for any of us to live our lives again.
Posts: 80 | From US | Registered: Aug 2011
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I miss waking up and feeling refreshed and ready to start a new day. I remember that feeling sooooo clearly even after 12 yrs.
searching4, that is so true...I miss me!!! Amen
But I've grown in so many ways that maybe this is the real me? If you've not been at this long, you will discover that it does make you change and it can be to your betterment.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic