Topic: What things do you do to try to still enjoy life?
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Are you consumed with the illness or do you do things to try to be "normal"? Like shopping, going to the movies, traveling (assuming you are feeling ok) I want to live my life and stop worrying about this 24/7. How can I do that?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
When I was very sick, shopping wore me out and movies were uncomfortable - that was such a bummer. But any time I could do normal stuff ... I did.
Watching movies at home, getting outside every chance I could... either to go for short walks, or sit outside in the sun while my family played at the park... I put in a lot of hours outside sitting on a blanket and laughing at my family playing in different parks.
If you have a good support system, I think there are ways to manage a lot of things to enjoy life... My husband would bundle me up in the car, telling me that if I could be sick at home, I could be sick somewhere more fun... and he would do as much as possible to keep me comfortable on outings.
We visited family - understanding family - and I became acquainted with various guest rooms, so I could sleep whenever necessary.
Of course, all of that was tiring too... so take it easy, and only do what works for you.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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For me taking a break here and there from the interenet helps. The computer can really drain me..
Whether I am feeling good or bad I try to stay connected to my "old" pre-lyme self.
I try not to over-indentify with this illness because when I do I lose most aspects of who I really am.
When I am feeling good I try my best to engage in my normal activities but on a reduced basis.
If I cannot hike then I will drive to the trail head and just sit in my car listening to some James Blunt...If I cannot run, I watch videos of some of my races or watch the Ironman Triathlon...
If I cannot go shopping I make the list and will have my dear hubby do it and just go for the ride in the car with him.
My point is that I sort of re-negotiate my terms with life based on how I feel and remind myself that I am much more then someone with Lyme.
I think the best way to stop worrying about this 24/7 is to start living your life now - even if it is on a very restriced basis.
I got tired of waiting till I was feeling "perfect" because I don't know if that time will ever come. I just do not want to miss out on life as it is happening right now.
Anyway..those are just my thoughts... TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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posted
it depends on the day-but I still do my best to enjoy life.
It's hard when the brain fog is being mega ridiculous because too much stimuli will make my brain short out, but I enjoy watching movies at home, seeing friends and family when I am capable.
I love to cook so my fiance's and my "date nights" are now going out to our favorite markets (Whole Foods and Trader Joes), planning a weekly menu, and I will spend a lot of spare time cooking meals.
I also do artwork.
I am or was typically a very social person-but I have been avoiding friends a lot, mostly because it drains me to have to keep explaining and sometimes it is a reminder of what I can't be right now. I am coming to terms with it though.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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posted
Try to do things you have always enjoyed. Sometimes it seems hard if you are tired to go out with friends, call a friend, take a walk. But you will be so glad you did. Its great to feel normal when you can. You may have to rest a little bit more the next day but sometimes its worth it. I have also found the best way to approach questions is if someone asks how I am, I'm good. If they ask how I am feeling than I will discuss the Lyme. Otherwise it can become overkill to you , family, and friends.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
I am very frustrated that sleep takes away so much time when I am not at work. My endurance is always in question now, and my money is extremely tight.
After the first few months of spending a large amount of time reading and researching about the disease, finding help, and lining up emotional and financial support to get me through it, I have finally started trying to go back to my regular life, in limited amounts.
I am still about as sick as I have been since I got bitten last year, and it may be some time before I get better. I don't want to let Lyme take away every enjoyable part of my life, so I think I need to hang onto whatever joy I can.
I looked at all my nonwork activities and got rid of any that take too much effort for the enjoyment I get from them, so I don't have pressure to meet obligations that are not fun.
I reduced the frequency of things I used to do more often, and allowed for the possibility of me cancelling if I don't feel well. I stopped making commitments to show up or bring things on particular dates in the future.
I am not having neuro problems, so I can still read, so getting lost in a good book is a joy for me. I am pickier now about which ones I choose, since my leisure time is so limited.
Sometimes it is more comfortable to listen to an audiobook, so I can lie down and rest my eyes and my neck, or sit in my recliner and crochet while I listen.
I visit with family or friends at least once a week, but schedule the timing and duration so it's early and short, and I them trained to either cook a healthy meal, meet me at a restaurant that works for my diet, or not mind if I bring my own food over.
I have just started enjoying cooking as a hobby, taking it as a new challenge to find appealing recipes that work with my new diet. I don't have the energy for this often, but it always cheers me up to add a new formerly forbidden food to my repertoire.
I used to love hiking, but I have a tick phobia now. I discovered a park that has a concrete platform with picnic tables overlooking a river, just at the edge of a parking lot, so in warmer weather, I go and sit there sometimes. It's peaceful.
I have a great group of online friends, who are people I met online through shared interests, mostly NOT Lyme, and have since met in person. We communicate mostly through chat, so there is usually someone around to chat with when I am stuck at home and feeling lonely.
Talking on the phone is good, especially if I'm feeling bad or lonely and want some support, and it's easier than typing on chat.
I find it frustrating that I have little to talk about in conversations if I have been spending a lot of time sleeping, or if I have the same old news about my same old Lyme symptoms.
So then I tease people and try to make them laugh, or tell them about a good book I have read in the past, if nothing exciting is happening in my life. Or just ask them how they're doing and get them to talk to me about themselves.
If I can manage to get out, I will go to a cheap or free concert or performance at a university. The students are always putting on some show or other, and sometimes the faculty, too.
Sometimes they have these on a Sunday afternoon. University websites for music and theater departments will have calendars, prices and parking information.
Play a board game or card game with someone. If you have brain issues, you can play the simplest ones. I have seen Alzheimer's patients play checkers.
If you have no one to play with in person, there are ways to play with an online friend, or even an online stranger.
Play with a child or a pet, if you have one around.
A very important thing is to treasure and appreciate every bit of joy or fun that you get--quality is better than quantity. Find the beauty and fun in whatever is around you.
Don't waste your limited time and energy on anything that neither gives you joy nor fulfills a purpose in your life.
I read that in a book about getting rid of clutter, but it applies just as well to activities. Or people, for that matter.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Do artwork or crafts, or anything creative.
Write poetry.
Sing songs, play a musical instrument.
These things can be fun, are great for expressing your emotions, and use your brain in different ways--maybe if one is difficult for you, another will be easier.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Hi, My life has changed so much from this illness. I find joy in different things now.
Petting the puppies.
Cooking, eating reading about cooking watching cooking shows, anything to do with food really.
Reading, I always have at least 5 books going at the same time.
Hanging out with friends.
Watching movies from home...theaters are out of the question right now.
Growing plants, veggies, herbs etc, even int eh winter
Listening to music. Pilates, yoga, meditation
Laughing at puppies going up the stairs
watching the sunset
working
taking in the moment.
We are here for a reason.
I sure as heck don't understand why but every once and awhile I find some kind of acceptance. I am enormously grateful for this site!
Blessings, Just Jan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
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