posted
I have been sick for a year with various symptoms. Have never tested positive but have had months of antibiotics, I see a well-respected LLMD, and a great physiotherapist.
One doctor told me that I am a person who looks great on the outside but feels terrible on the inside. But sometimes I feel like I just can't stand it anymore.
What do people do to help them cope? Sometimes I just feel so desperate that I will never feel well again. I look at other people just enjoying life and I feel jealous. Then I think of people who are much worse off than me and I feel guilty. I plod on from day to day, sometimes feeling better and then I get excited thinking I am on the mend only to have my hopes dashed the next day when I feel bad again.
I don't even talk about it much to friends or family, they are bored with hearing the same stuff over and over and they don't understand anyway. I'm not depressed just despondent. How do you all cope from day to day?
[ 17. June 2007, 07:29 AM: Message edited by: aileenhome ]
Posts: 133 | From Far Hills, NJ 07931 | Registered: May 2003
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi. I am sorry you are feeling so poorly both emotionally and physically.
I have days like that, but no longer weeks on end.
I pray. Then I pray some more.
I read other's posts of where they are and realize how blessed I really am...
There are so many so much sicker than I.
I pray for them.
I try to find something to laugh about daily....
Laughter really helps me cope too.
I rely, rather heavily, on my friends here on Lymenet to help me cope.
I pray for them also.
Sure I get tired and stressed out. Today is one of those days.....then I read your post and realized
That I can do something for both of us....Pray.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
I spend many an hour researching online for the as of yet very elusive Magic Acorn. (picture attached)
I have a friend Morocco who sometimes helps me on my quest. Here is a picture of my trusty friend Morocco:
As you can see this squirrel nonsense takes up a bit of my time but I enjoy it immensely. I like to find new squirrels to express myself with and to make myself smile and maybe others smile too.
Seriously, it isn't easy being sick when we look relatively healthy and feel absolutely awful. The one thing I've gotten from my ten years with lyme is that I cut myself slack. I'd rather take a nap and have someone think I'm lazy, than push myself and suffer a week in bed instead. Others opinions aren't nearly as important anymore.
Sometimes just to relax my favorite thing to do is lay in the shade of a big old tree, close my eyes, and just listen to the wind rustling through the limbs. That is my favorite sound in the world and so soothing to me. If you then mix that sound with the smell of crisp mountain air I'm in heaven.
So my coping skills consist of chasing acorns, napping under the trees and listening to the wind. I AM NUTS!!
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
After being ill for most of my ife, disabled for the past six years, I have found these things to be helpful:
*Pray. *Accept that for the time being I am no longer able to do what I once could. *Listen to my body and rest when it says to *Plan on doing about half of what I think I will be able to do. *Plan some social activities to keep my spirits up (phone calls, Lyme chat, dinner out). *Realize I am not able to leave home daily, like most people do. *Find enjoyable, low energy activites to do - I like to make scrap books. *Ignore "friends" who don't get it. *Come to Lymenet for support.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
ByronSBell 2007
Unregistered
posted
TV is no good during the day, movies are good though...
I listen to music, try to do little things around the house, research as much as I can on lyme disease, try to do little excercises, I am just about devoting all of my time to lyme disease since I am able to live with parents...
Sometimes I force myself out of the house no matter how bad I am feeling
IP: Logged |
posted
hmmm, I was litterally just sitting here thinking the exact same thing, I was about to post and then saw your post.
I feel the exact same way. EVERY SINGLE WORD! I really wonder if I will ever get better, or if this is all just going to get worse. My life was so much better before treatment even though I lived in pain every sec. Now all of my symptoms have become worse, and im upset... and complain, like right now, and then remember all the people who have it worse than me and feel like an egg head to even think a single word.
I do not know what to do to keep my spirits up. Before starting the treatment, lyme restricted all that i enjoyed. The only things in life I could really enjoy was food, chocholate, food, food, i love food, long hot showers and painting my nails. Now, I can't eat the foods I like (really its my choice, I want to prevent getting yeasties), I am way too tired for showers so that is out. I can paint my nails which is awesome! and The TV show 'scrubs' REALLY chears me up... such a good show when you don't feel good because of the fast paced comedy.
My boy friend is SO supportive and awesome, but I cant help but worry as to when he is going to realize that chronicly sick people are no fun... but he is amazing, he is my best friend and we have been together 3 years now... thats kinda invested right? lol
I am way too tired to participate in any of my old hobbies (had a glass fusing business, so much fun!)
I think if we find a good hobby, one that we can do even wehn we are REALLY sick, it would help.
It is nice to know I am not the only one dealing with these akward feelings. All I can say is 'Thank God For LymeNet!!!
posted
Right there with ya! feeling sicker than before treatment but I have had moments when not herxing or backing off the antibiotics completely and I feel my old self just in some pain and little low on energy...
If you can get your mind off being sick your pain will actually decrease "sometimes"
For example I got a new car and it is fun to drive (when I feel like it) and I went to just go sit around and watch/hang with my friends while they bowl at the bowling ally and finally I got the nerve to give it a few shots with the bowling ball
IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi aileenhome,
I empathize with people looking at me & thinking but you look so good how can you be so sick. Here's a link that helps me:
I also get threw my bad days one minuet/hour at a time & Try not to look to far down the road. When I have a bad day I try & concebtrate on the little things...like Magic Acorn does. :
Cuddle with my dogs, watch a good net flix (if you don't get these you may want to look into the...I so look forward to getting them in the mail each week. maybe a little something special to eat... on my better days I try to take some pics with my dig point & shoot camera. Coming here to LN for suport helps alot too.
Hope better days are a head for you & untill that time hang in there & think small things or any thing that brings a small amount of happiness into your life
Hugs Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Amazing how much info you can find on the computer!
Better days ARE coming...I do remember having pity parties and crying because I knew I was NEVER going to get better. But I DID...and you will, too!
Big hugs...
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
We all have different levels of illness, so that means we can't all cope in the same way. But this is what I do that helps the most.
1. Spend time with my cats. They always put a smile on my fact. On my worst days, just having a cat cuddling with me is the best medicine.
2. Yoga. I find that yoga is helpful because it helps me relax, it gets my energy up, and it keeps my muscles strong. So it reduces pain and gets circulation going as well as being emotionally stabilizing.
3. Keep busy. I feel worst when I'm doing nothing. I actually applied to law school before my Lyme diagnosis, when I had been diagnosed with fibromylagia. It turned out to be a great decision, because I don't have time to think about my illness.
I know that's not the answer for many people. I am lucky and don't have cognitive symptoms. I also love school and have always found that type of stress enjoyable. But there are other ways to keep busy depending on what you love and your restrictions.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
Aileen, I identified with everything you said in your post, but one thing really stood out to me--the part about how you'll get excited when you feel good, just to have your hopes dashed when you wake up the next morning and feel terrible again.
I HATED that. I found that what has really helped me was finally accepting that I'm sick and there are going to be the ups and downs.
That acceptance really only came once i got diagnosed.
Now I've begun treatment. I picture myself healthy again and imagine the feeling of having lots of energy. I've heard that visualization techniques and positive thinking can do wonders.
I hang out with my dog, who does something funny every day.
I work out any day that I can, and like someone else said a few posts back, I force myself out of the house some days. Even though it's hard to do, I feel so much better once I do something.
I DO NOT watch Tv during the day. It makes me feel more tired. I also read that the TV emits some kind of energy that does make us feel tired. I listen to music instead.
I read a lot--fortunately, Lyme hasn't interfered with reading for me so I read about Lyme, spiritual, or psychology stuff. It makes me feel like I'm continuing to learn and grow.
Once I accepted that I was going to be slowed down, I decided to make the most out of that time and to keep growing.
I stay in better touch with friends and family.
I think about the lessons Lyme may be teaching me.
And I keep picturing myself healthy again!
I definitely think once you accept that you're going to feel crappy with ups and downs for a while, things get a little easier.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
| IP: Logged |
posted
It is so inspiring to hear from so many lovely people. I have 2 golden retrievers and not a day goes by without something funny happening where I can laugh. Just watching them swimming is so much fun!
However bad I feel I know there are many people worse than me - when I had lyme 10 years ago Christopher Reeve was my inspiration. This time around it's the soldiers who have returned from Iraq with missing limbs.
I try to keep busy too - I have 2 teenagers, one is leaving for college in August. I am PTO President at our high school, I practice yoga, I tap dance, I play a little tennis. And I do have a weakness for reality shows like Top Chef, Survivor, and So You Think You can Dance!
Back in April when I was about to get on a transatlantic flight and feeling like I couldn't take it, I remembered somebody on this site saying, just take half an hour at a time. So thank you everyone, a few kind words can make such a difference.
Posts: 133 | From Far Hills, NJ 07931 | Registered: May 2003
| IP: Logged |
Coping everyday with lyme disease is hard to do. Here are some things I do to cope...
1. I find the best thing that helps me get through the day is knowing I will get better. If you think that you will get better you have a better chance of getting better than somebody who does not.
2. I also like to set goals for myself. I have learned to accept the fact that I can not do everything I used to.
This was hard for me to do because I was a very independent person who did everything myself. By setting goals for myself and what i want to accomplish in a week helps me and I feel like I acheive something.
For instance, I am a college student and am taking a 2 credit hour speech class this summer. The class is pretty easy but I took it just because I know I'd be proud of myself if I did it.
3. Going on walks on pretty days. I find that walking when its nice outside makes me feel so much better than when I stay at home.
4. Keep in touch with friends and family members. I have learned to accept the fact that the people in my life do not understand Lyme disease and never will.
I try to have lunch with a friend once a week and keep the topic Lyme free. I think we all need time where we can pretend liek we are normal.
5. Reasearching lyme disease. I find it helps me to find out everything I can possibly know about Lyme disease.
Lyme is a complicated disease and most doctors have no clue about. By staying informed you can learn about all treatment options and be able to inform other people.
6. LymeNet.. people who understand
Hope you feel better, LuLu
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
| IP: Logged |
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
I play games on pogo on the computer. Some days I can't leave the house cuz I am too sick, so it keeps me sane.
Prayer has always helped me also, during the worst times.
Posts: 6638 | From Michigan | Registered: Jun 2001
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
When I was first sick I was so swollen everywhere that I couldn't stand on my feet long, my swollen hands couldn't open doors, pill bottles, drive a car, etc. It took me 5 mths to digress to being truly housebound.
I researched and found a vegan diet that is supposed to really help with Rheum. Arthritis (caused by my lyme). 2 weeks into that diet, I could walk for 2 hrs before having to sit. This was major improvement and it sent me in search of a doctor who understood nutrition and healing the body. He was not a lyme doctor and at this point, I wasn't chasing lyme anymore, I had to get functional again.
Dr was 2 1/2 hrs from home and in the beginning, I had to spend overnights because I couldn't drive down and back.
Gradually I kept improving until it was no issue to drive roundtrip in one day. I was able to work fulltime again.
My energy and my stamina continued to improve and my RA went from a high moderate to a weak positive.
He dealt with many issues including heavy metals, yeast and diet.
Mothers day weekend this year I was bit again and I sunk like the Titanic. Muscle weakness and exhaustion and low grade fever. Increased joint pain. Ugh!!!!!!
Went to a local chiro just for some neck adjustments (have had neck issues for years due to a whiplash injury)
He wanted to put me on a microcurrent machine. Please search my posts here about this machine.
Long story short is: The weakness and exhaustion completely disappeared by the 2nd treatment and have not returned. My energy is back and my joint pain is minimal again.
Whatever your symptoms, it is worthwhile to try this treatment and see if it helps you. You will know very quickly as it is a fast acting treatment, not one that takes months to see results.
www.frequencyspecific.com is the website of the doctor who developed this. It is FDA approved and is used by professional atheletes to heal injuries. There is a section to help you find a practitioner in your area.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I have been disabled since 2000 and these are some of the major things that have helped me
- I Do something that retains my identity.
and I use the term "do" very loosely. I am to sick to actively do the things that I really like or solidify my idenity
But even though I am far to sick to actually work on my art work I can work on ideas in my head and sometimes read art books...
so it keeps me connected to who I am.
I think one of the biggest losses this disease causes directly or indirectly is a loss of who we are...
so I think anything that counteracts that sense of loss is very benefical.
- Always hope. And believe that I will be well and be able to live again. And accept that the when I will be better is an unknown that i cant really control.
And when the bad times hit I just try to remember that they always pass and things will get better.
- And the support from family members and the cats in my life have made being sick and trying to get better much easier.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Be of service to others as much as I can- very selfish really- takes my mind off myself & my problems if I happen to be having any!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| 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!
![[Eek!]](eek.gif)
![[lol]](graemlins/lol.gif)
![[group hug]](graemlins/grouphug.gif)
![[Cool]](cool.gif)
Printer-friendly view of this topic