posted
I don't know how to deal with the feelings I have about all the time I have lost to being sick. I am 28 and I have been sick since I was 14 and essentially lost all of my 20s to this illness. My birthday isn't coming up for another few months but I dread it already. I spend weeks crying around my birthday. I feel like I wish I could be unconscious 24/7. I just don't know how to deal anymore (especially with the insomnia). Anyway I was just wondering how you cope with it; I'm sure some of you can relate. I feel a sense of loss and anger. I have been at home since 2004 and this will be my 6th birthday in a row I have been sick and unable to do anything (I've been on treatment since November 2006).
Posts: 11 | From canada | Registered: Jul 2008
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posted
Hi Macgirl, I don't have any advice because I feel the same way. Just know that you are not alone, and a lot of us mourn the loss of our youth and what should be best years of our lives.
I am 32 and have been sick since shortly after my 30th birthday. In fact, my 30th birthday was one of the last fun days I remember before my health quickly declined.
I know you have been sick a lot longer than me, and can't even begin to imagine what being sick through your teens and 20s must be like.
What keeps me going is knowing that I won't give up until I'm better, no matter what it takes. Since you've been in treatment for 2 years, do you feel that you are slowly improving? If not, then maybe you should look into consulting with other LLMDs, or even just discussing additional tests or treatment options with your LLMD?
You might also want to look into seeing a naturopath or other alternative practioners, who may be able to help you with detox, etc.
PM me if you have any questions or want to chat further.
Hang in there!
Erica
Posts: 408 | From California | Registered: Apr 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi Macgirl,
I don't know if this will help because I'm at least 20 years older than you are.
I didn't really get sick until I got hit on my mountain bike by a pick-up truck in 2001.
That started my downward spiral and I haven't been able to go back to work since.
What I do is a lot of self-talk.
I tell myself that I'm dealing with a terrible disease and that's its ok not to.....(fill in the blank).
work travel at will climb mountains ride that bike go shopping go anywhere feel well be how I was etc.
One thing I learned from going to some meetings that helped me was to write down things that you're grateful for.
It can be hard when you're feeling down but I was surprised when I did it the first time.
Since I've been sick, my perspective has changed, and I find that I'm grateful for some things that I really didn't notice before.
Here's a sampling...
I'm grateful for
a warm comfy bed on a cold night
pizza
laughing while watching 'You Don't Mess with the Zohan'
my faithful black lab Rocky
reading the book 'The Kite Runner'
laying out in the sun in my backyard
after orals being able to drink that variety case of Samuel Adams over time
So, Macgirl, it's the little things in life that I've learned to appreciate that keep me going.
I was so busy before I didn't really enjoy things as much. I did the same things but didn't have as much time and didn't really appreciate it or savor it.
Another thing I tell myself is that I'm pretty tough. Like all of us going thru this, I've become my own hero and advocate.
I've come to have tremendous respect for myself for learning how to deal and cope with this devastating disease to the best of my ability.
So my friend, give yourself a break, because you really, really deserve it.
Oh, and for that insomnia, some people have some luck with Melantonin and 5 HTP. I take 4 mg. of Zanaflex and that works for me.
Hang in there!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6164 | From Columbus, GA | Registered: Jul 2004
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posted
I'll give you another 'older person' persepective.
We all have the feelings you talk about. For myself, I am angry. But, when I think about not being a true parent to my young child for two years, I get incendiary.
But I do realize that too much emotional turmoil doesn't help my efforts to get better. I also realize that if I allow myself to dwell too much on my anger, it just takes MORE time away from my life.
Having said that, it is still a mental effort everyday to keep the anger at bay. And I never want to move completely past my anger because it IS what motivates me to help others in a similar situation.
But after feeling better for over a year now, I am just now writing my Lyme story. Why? Because when I go over everything, I get livid. AND, I feel I'm giving even more of my life to Lyme AGAIN!. Yet, it's important to do to increase understanding of what's going on with LD and other TBIs.
Starting to digress now, sorry.
I think it could be harder to summon the effort of will required to maintain a good attitude if you've been sick during your younger/formative years. During the years I spent accumlating the great experiences and happy memories which sustain me now, you were suffering.
Just refuse to give any more time than absolutely necessary to the LD - meaning, don't think about it except when it is forcing you to! And, when I say that, that's assuming you have control over your own mind - certainly for awhile there at my sickest, I did not.
PM me anytime, I really feel for you, you will get well and you will be happy again.
Best -
otm
Posts: 314 | From east coast | Registered: Oct 2007
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quote:Originally posted by macgirl80: I feel like I wish I could be unconscious 24/7. I just don't know how to deal anymore (especially with the insomnia).
I have only had extremely painful symptoms since Feb/March...so I can't imagine how spending that many young years of your life feels. However, I have come to the realization that I will be spending many years of my life in pain and frustration.
I feel very angry and sad. I used to pray to God to hurry and let night time come so that my little 2 year old will finally go to sleep, so that I can sleep and forget this horrible life for a few hours. But now, it's hard to fall asleep, I wake waaaay too much in the middle of the night. I can't even look forward to the night anymore. It's made me even more upset. I'm not depressed. I'm disgusted. I'm frustrated. I'm outraged. I want to scream to the world how unfair it is that I have this disease and my insurance won't cover it. You have to have lots of money or lots to lose to get treated for the length of time needed.
I'm only 27, I have this wonderful 2 year old...and I sit there looking at the clock, starting about 7:30am...dreading the rest of the day because I know that it will be spent in pain and frustration. I should be outside playing with my son and smiling, not staring at the clock praying for bedtime. I feel so angry that I may not be able to have another child - yet, this illness has stolen away so much of that new mommy innocence. I hate this. I'm so sad.
-------------------- ~*~Lyme POW~*~
I will escape. Posts: 100 | From n/a | Registered: Oct 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Wasted Days
Day after day slides by Piled up like bones in a graveyard Higher and higher, never getting buried
Sticky, slimy, sweaty days Blurry, foggy, dizzy days They just slip by.
I lie here Like I'm watching a movie Of someone else's life.
When do I get to wake up?
Summer, Fall, Winter, Spring Again, again, and yet again Now the days have twisted somehow into years
Once in a while A day becomes crisp I can breathe the air and hear the sounds But mostly, I lie here
Day after day slips by Until a real tangible chunk of my life has escaped me I cannot reclaim it I cannot get it back
Most insidious of all Are the years of life stolen From my child, who has no mother
No one to play with him, no one to care for him No one to help with homework His life is slipping by Day after day, spent on a computer When he should be outside laughing and playing
Night after night, watching TV Rather than reading or playing a game Year after year, grades sliding down, homework not done
No parent to guide him Week after week, cereal for dinner No one able to cook for him
Steal my life, steal my joy Leave me a shell of my self But you have also stolen someone's childhood
And I can't fix it I try, I try, for years I've tried
Pills and supplements Shots and Ivs Doctor after doctor Still I try
Still I lie here A shell of a person A shadow of a mom A hollow life.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter started getting sick at 14, as well. By 16, she was homebound and couldn't attend the last two years of high school.
She is now 20, and is now getting to attend some on campus classes at the local college.
It CAN get better. She was very sick, now she has a few lingering symptoms.
She knows that it will be something she will have to live with and is trying to develop a lifestyle that will help her have a life and a disease.
She still can't drive or hold a job. But, we are trying to be grateful for the progress she has made. And, we hope in two years she will be taking theater classes. She puts aside her birthday and Christmas money for that goal.
She cries every birthday, as life goes on. You have to grieve the loss. It doesn't mean it won't hurt. But, you can have good days.
If you haven't met with a good therapist, it may be wise to get it out of your chest.
I'm glad you came on this board and shared. You are not alone. This disease is a thief.
Oddly, there are days when my daughter says that compared to those who are in college, her own age, who have screwed up their own lives, she can be grateful for this circumstance that has helped her mature, and glad her life wasn't wasted on doing something stupid.
She really has matured.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Hi Tracy, I understand and I am really, really sorry.
The 'collateral damage' of LD is unbelievable. It sounds like you are on your own? My husband has done his best and is great, but he works long hours and isn't always available for my son. Even with his help, I still feel as you do.
Again, I am sorry. I will keep you in my thoughts and prayers and send thoughts of strength your way. I don't know what else to say.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i'm 28 also, and i cried on my birthday this year too. i've lost a good chunk of my twenties to this illness; i haven't been debilitatingly sick as long as you, but lyme has taken over my life mentally and physically for the past five years or so.
i hear you. i completely, totally understand. i don't have any sage words of wisdom, really, because i'm in a very similar place. i do try to appreciate the small things now, and i try hard not to compare myself to others my age or berate myself for what i 'should' be doing or 'should' have accomplished thus far in my life. i take it one day at a time, sometimes two if i'm feeling up to it, and remind myself of everything i have to be grateful for.
also, i find it helps to let myself dream. to not completely abandon the hopes and desires i held dear prior to falling so ill. (of course, they have changed some, because lyme changes you irrevocably. but underneath it all i am still the same soul/spirit i was before. my foundation is still intact, no matter how shaky it may feel sometimes.) i'm trying to believe, to KNOW, i will be well someday, that i'll be able to accomplish everything i set out to do; my timeline just won't be the typical one, that's all.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Mac Girl...Wish I could read what the others posted.
First thought I had is finding a way to get some sleep. That really helps.
Second thought I had is I don't know how people your age cope with this. Wow. Tough one.
Third thought I had is I try not to think of the loss of years and focus on getting well and hoping that future will be good.
When I was really sick, I was not able to have that kind of frame of mind. I just got through each 10 or 20 min at a time.
I also do a little day dreaming.
Let's say you are well enough to enjoy your birthday. What would you like to do if you were able??
It will happen. Hang in there.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
macgirl...everyone here on this forum can relate at one time or another, or all the time with your feelings.
For myself, I was in my early 40s, enjoying midlife, and suddenly..bam...an ACL injury and surgery, and a few months later, bam...the lyme symptoms of encephalitis/meningitis started...then a few months later...bam..rearended by a semi driver...
Sometimes it seems like you're constantly under a rainy cloud and you'll never get better. But you have to persevere and forge ahead.
Two years ago I could barely move around, constant brain fog, cry spells, migraines, every symptom you can imagine, and I thought I was going to die. Fast forward to now, and Im slowly regaining all my physical and mental capabilities.
We're all impatient and want to be cured now, but it doesnt work that way.
I always think in the back of my mind, God could have taken me when the encephalitis was peaking, or when rear ended by the semi...but he didnt.
We're all survivors, and if we stick together, help one another, and continue to fight, someday we'll all be back to our normal lives.
Im a firm believer that half the battle with any injury or illness is the positive mental aspect. You have to believe you are getting better. Sometimes its a slow gradual process and you dont notice it, but if you're under treatment and doing everything possible to help yourself (diet, exercise, abx, supplements, more rest, less stress), eventually you'll turn the corner and rediscover your life again.
Didnt mean to sound preachy, but sometimes we can all use a little support and pat on the back. Most people just dont realize what kind of lives we lead, so its up to us to do it for ourselves, with each others support...
Game on!!
Posts: 514 | From . | Registered: Apr 2008
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posted
macgirl, i know exactly what you mean. i also often think that those docs turned my love for life into anger and despair.
maybe it sounds ridiculous, but what helps me is to think of statesmen like John F. Kennedy or Franklin D. Roosevelt.
they were soooo sick (Roosevelt couldnt walk most of the time, Kennedy had to take tons of pills including painkillers and antidepressants), didnt complain and look what they were still able to do! they changed the world. so, when i get depressed this thought helps me to be brave. (well, sometimes at least.)
hope it helps you too.
[ 13. October 2008, 03:38 PM: Message edited by: steven ]
Posts: 226 | From earth | Registered: Sep 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
macgirl - Like everyone else here, I understand what you're going through.
I bit when I was 14, though didn't get dibilitatingly ill until about 10 years later (I'm 24 now). But I had symptoms that started right away, though at the time, I didn't put the two and two together and had no idea what caused my hand arthritis or chronic headaches. At the time I was bit, I didn't even think anything of it. I had no clue lyme existed or that ticks were diseased, etc. So sad, really...
It was around a couple years ago when things started going downhill... Reading back in my journal, I had a lot of heart symptoms that I had no idea what could be causing it (tachycardia, low blood pressure, shortness of breath, palpitations) and was told that oh, you're a healthy girl, it's something that just happens to some people and we don't know why, etc. Of course, they are doctors and at the time I believed them and felt assured that they knew what they were talking about...
Then last year, January 2007, BAM!, tons of symptoms came out in one day. It was only a few months after I had gotten married and had moved to another state. Now, to me, it's obvious that the stress from the move and from the marriage, and the traveling, really brought it all out. Stress is one of the things that really brings out these bugs...
It's been VERY hard for me. I was just married, it will be two years in November, when I got sick and because of this illness, I can't be the wife I had planned to be. I can't have a career. My husband and I can't be the normal family we thought we'd be. Sometimes I wonder if we'll ever be. It looks as if he also has lyme now too... so... I don't know. It's extremely hard. We are having trouble with income now... debt... etc. It's just seems to keep piling up.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
hey macgirl I have had lyme for 6 1/2 years, but only really ill for the past two. They have been a major struggle for me to get through each day.
You are a strong person to have been dealing with this for so long!
At a time when I was feeling especially down and out I wrote this poem. Now I look back and read it when I need some encouragement.
Dear Disease,
I am grateful for this illness. I appreciate your persistence. I love your willingness to not give up on me. You have taught me to look at life through different eyes. You have taught me to slow down. You have taught me the importance of breath. You have taught me the importance of nurturing always. You have taught me to fight back, with all of my energy everyday, every night, every moment. You have taught me to focus my energy only on what I truly want. You have taught me that giving up is unacceptable. You have taught me the power of my own thoughts. You have taught me to look deep within. You have taught me to remember life is beautiful. I am truly grateful for all these learnings. I want to thank you, for most importantly, I have learned that every breath, every step, every thought in life is healing.
With much love and appreciation, lovingattitude
-------------------- -Love and Gratitude Posts: 69 | From another planet far far away | Registered: Oct 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
macgirl -
Question: How do you deal with feelings regarding losing years of your life?
Answer: One day at a time.
I've been dealing with this illness since I was bitten by a tick at age 5 and I'm in my 50's. I only found out a few years ago that it is lyme. I've been sick well over 1/2 of my life.
Both of my parents were ill and all of my siblings. 2 of my siblings are disabled now too. None of us knew what was wrong until just a few years ago.
The anger ebbs and flows, the same as grief tends to do. Even though I find anger very draining, I work on feeling it and releasing it whenever I can because I know it is not in my best interest to hang onto it. It is destructive and I won't let it have free reign anymore than I will let lyme have free reign.
My anger often turns into grief. To me, that's a good thing. Then I cry and fully allow myself to feel the grief. Sometimes when I think of the injustice of it all for myself and others, I get angry again and I start over, releasing, releasing, releasing....
When I've released as much as I can, I often find acceptance and peace for awhile, until the next round. It is a process. I try to be cognizant of what I need to do in this process that will reap the biggest rewards for my healing journey.
I try to focus on what I CAN do and not what I CAN'T do EXCEPT for when I'm in the process of releasing anger, grief, despair etc. etc... That's when I can let it all out.
I'm always looking for ways to bring meaning to my life.
I help others as often as I'm able.
I love crafts so I work on learning new and interesting crafts when I'm able. I do projects that I can do at my own pace.
I try to keep my mind active and learning in many different areas including my old occupation of computer programmer just in case I'm ever able to work again.
Bottom line, I try to do things that bring satisfaction and joy into my life and into the lives of my family and friends.
Like others, I try to remember and appreciate all the wonderful aspects of my life. All the people that I love and who love me back!! I give thanks for all that I have.
I always keep my eye on the goal. The goal of learning what I need to learn so that my family and I can get well.
One other thing. I try to use what I've learned in my journey through despair to be a better person. Broaden my understanding of others. I know that just as my own experience is unique, so are the experiences of others who have challenges just as great or greater than mine. They may be unseen challenges and they may be misunderstood. I try to remember that and give others the benefit of the doubt because as we know, things are not always as they seem.
Bottom line, I TRY to use what I've learned to become a better person.
Hang in there, it is an ongoing process. Get the most that you can out of it.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi macgirl80,
I think it's part of the grieving process when you realize what is being or has been taken away from you.
I was sick since I was very young, so I thought many of my symptoms were normal. At the age of 17 I was diagnosed with a thyroid problem and I blamed a lot of new stuff on that. Then by the time I was 20 I already had a blood transfusion and went down hill from then on. I got worse every year more mental that physical symptoms tho.
The only ting that has helped me in dealing with the grief is to acknowledge it, love myself, and let myself cry when I needed to cry. I really believe only time will truly heal you.
And don't listen to people who tell you it's not so bad... blah blah blah, the endless free advice to stop feeling sorry for yourself and all that, grief is grief and it feels like someone died. Nobody would ever say that to someone who just lost a spouse or a child!
Believe that this will pass and it will get better, just like any other loss or grieving process.
Today after 7 years of abx I finally got better. (I had the very best doctor for me, that was a true gift from God and without him I would not be where I am today.) I am not completely healed, I have chronic lyme, but I am working and I try to focus on the things I have today. I try to take one day at a time.
Lyme takes a very long time to treat for many of us. You will get better, hang in there. And don't lose your hope.
PS: I couldn't read all above posts...so I hope I am not repeating what everyones else said, but my eyes are very tired today. Hugs to all..
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
It's hard for sure and you can't understand it unless you've been there. The first 2 years I had the most noticable symptoms, I was sleeping all the time and crying constantly for no reason. Then I got well enough to try to function and everyone assumed I was better.
The doc's told me I had things like mono, Chronic Fatigue Syndrome, thyroid issues, ect. Then I will get sick again and feel awful. I try not to complain much, but I'm still not well. I got sick when I was 17, I had the whole world ahead of me and then, nothing mattered.
My world was shattered and I didn't know why. I was tired and cried a lot and had panic attacks and muscle twitches, I started wetting the bed at night at times and many other things. Graduating high school was awful, I just kept wondering why everyone was smiling. I knew life wasn't worth it, as it all would end someday, my depression was really bad the first 18 months after I got sick.
Now I'm almost 30 and while I've had some good moments (which I attribute to a crazy raw food diet that I am planning to attempt again), I've also had some pretty bad ones too.
My husband is very supportive and wonderful, I'm very lucky in that way. I just want it to end though, I want to dream again and not just survive. I want to really live.
I personally have a lot of faith in the doctor in Germany and may go over if we can sell our house to pay for it. It sounds very promising.
Good luck to you and I understand the pain and the anger. I try to remind myself that I had 17 years of compete wonder and freedom, some people never have even one in a lifetime.
posted
Thanks everyone for replying. There are a lot of people out there who can relate.
I do feel like I have made improvement. The Rocephin made the most improvement in my bladder symptoms but then I developed a weird reaction to it and can't take it anymore. For me the insomnia is the longest running symptom and I've tried everything and nothing has really helped at all. It is the insomnia that drives me to despair.
Anyway I had to go off and on the rocephin due to picc line problems (had 3 picc lines die on me) and then chest port problems (am on my 2nd one now).
As for what I would do on my birthday if I were feeling well I don't know I hadn't really thought of anything.
I don't remember what "normal" is anymore since it has been so long since I felt well.
I do really try to be grateful for the things I have (support).
Well it's a rollercoaster for sure. I was doing better in the summer but ever since then I've been going downhill.
posted
I hope you can find something to help with the insomnia. I think it's a matter of trying different things to find something that's going to work. People use a variety of sleep aids here.
I too went through so many birthdays, feeling like I had let my life down. I had a milestone birthday with other people with fibromyalgia, including young people, and I wondered why we were all that way. Now I know.
At least we know what we're dealing with now, so can try treatments. I think that's all we have, is experiments to see what's going to work. That's the hope, at least, that we will get somewhere with our various treatment experiences.
So, I think Lyme makes us wise beyond our years, and helps us relate to others who also have health challenges.
One thing I do - I try to find a small way to connect with interests I have that I can't fully participate in, just to keep the connection.
Posts: 13117 | From San Francisco | Registered: May 2006
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I just turned 60 a week ago. I have been sick since I was in the eighth grade at school.
I always had a burning desire to get a job and work for as long as I can remember. The day I got my driver's license I went straight to town to get a job.
I was only able to work for around seven years of my life and oh what a struggle it was. I was so tired I could hardly go but the love of work made me able to do it.
Then it became so hard I just couldn't do it. I was still in my late 20's and I told myself it was only a short break. I spent as many hours as possible searching for answers. I knew no one was suppose to feel like I did.
I had no one to talk to about it as no one understood. They would say I felt sorry for myself.
While in my 30's I still had hope of returning to work. Still looking for answers. Going to doctors only to have them draw blood, tell me everything was ok and send me out the door. All the time feeling like crap. Hardly able to get my house work done let alone have a job.
Then my 40's and I must admit I was having a really hard time staying positive but somehow I did it in spite of the fact my husband of over 20 years left me for another women who was in her 20's. He thought everything was in my head.
Now I really had problems--- a young son to raise who was only four at the time, very little income, no support at all, not that I had ever had it. And still searching for answers to my health problems which seemed to grow worse everyday.
I suffered in silence as no one understood. The doctors, neighbors and friends all thought it was just in my head. Get out and do something they would say and you will feel sooo much better. Yea, right. No energy to do my work let alone get out. And do it with what??! What little money I had was used to literly keep a roof over our head and a little food in the house. But I told no one.
Still I had not given up hope of someday working. Someday. If I could only find some answers. Someday people wouldn't call me lazy any more.
Then I hit them dmmmm 50's. Did I give up hope, no not completely but it was sinking away.
I remember when I was 57 someone telling me they couldn't have made it thru what I had. I looked at them and said, "You mean I had a choice?!!" And yes I was bitter.
So hear I am 60. Still alone. Still haven't been able to work. Still broke. But I do know what is wrong with me--- even if it has only been for a couple years.
I know I will NEVER be able to look forward to doing the things others have already done, I know I will always live in poverty. And I know I will probably never be able to treat this terrible thing that is inside of me stealing my life.
But I also know I have a choice-- a choice to be bitter and hateful and waste away the rest of my life or grab every bit of happiness that comes my way.Steal every minute of life I can. Jump for joy because I don't have to wonder what is eating away at my life. And if I can get up in the mornings ----look in that mirror and tell the face looking back at me, Hey, you're pretty tuff or it would have beat you by now.
And as for sleep, I don't ever want to sleep again. I've spent what seems like the better part of my life sleeping while others were living.
So fight as hard as you can. Give up on the days you have to and tell yourself it's only for today. And then get back up on your feet the next day and face it head on. And most of all if you start feeling like it's the end of the world, stop right there and think of me. Tell your self how lucky you are to know what is wrong. Think how I would feel if I was your age and still had hope.
posted
Loving Attitude: Your poem really hit home with me. I actually started to cry. I wrote something similar once, things I AM grateful for. It's nice to look at it and be like, "Wow, my life still has so many wonderful things in it" but then sometimes, I get ****ed because I can't enjoy those things, people, on my list of things that I am grateful for - because I'm sick.
But I liked yours a lot. By reading that poem, I realize that I am grateful for the same things you are when it comes to this horrible disease.
And to the other person (sorry forgot the name) who wrote the other poem, "Wasted days", I totally related to that also. I started crying when you mentioned your child. "No one to play with him, the cereal for dinner thing" I really related to that.
I had said before but nothing makes me more angry about this disease than losing out on spending time with my 2 year old son. NOTHING. I should be running and playing with him, but I sit on the couch and watch him play on the floor, happily so, with his choo choos when I should be down on the floor playing with him, chasing him in the yard, taking him to the park more, the mall more to walk around and ride the carousel there, etc.
I have to make more of an effort. For HIS sake. It takes EVERYTHING AND I MEAN EVERYTHING to go out in public in horrid pain and do something fun. But I have to for him...and for my step daughter.
Thanks to both of you, your poems really touched me. I think I might try writing some of my own. I used to write awesome poems when I was younger, they were really great.
Anyway...thanks to the both of you, again.
-------------------- ~*~Lyme POW~*~
I will escape. Posts: 100 | From n/a | Registered: Oct 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I grieve until I no longer do, and then I accept each day, while still seeking a solution as vigorously as possible.
The grief will come and go, and it takes many years for many people with this illness. Especially if they've treated it and treated it and still can't seem to get well. Getting "better" perhaps, but not well drives the process.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
My faith in God. He sees the end result that we don't. He sees the bigger picture of it all.
And I don't waste my time feeling sorry for myself..it does nothing. I instead focus on everything positive..if you really think, you will be amazed at the positive things in life to be grateful for.
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Shosty
Unregistered
posted
I've lost some years, and have been very sick, but my feelings about that are nothing compared to watching one of my children suffer, and miss out on so much middle and high school. I understand how you feel, being so young.
Our daughter also has type 1 diabetes and very painful endometriosis, and it turned out that a horrible two year headache was from food allergies. Getting the right care for things is one of the biggest challenges. Do you have someone to help you with that?
There can be unexpected pluses to suffering. I am not a romantic about this, by any means, but I do see it. Our teen has learned not to rely on the understanding of others, in a good way, and is very mature. She does not sweat the small stuff, and is very helpful to others who have problems of one sort or another. She also found a creative outlet, even at her worst, in her case, writing music.
Things can turn around, they really can. She is now at an Ivy League College and thriving, even though her health is still a challenge.
I would suggest maybe looking into an SSRI, for a little while. You can start with a micro dose (like 1/20th of the smallest pill) and work up to 1/4 of the smallest pill, if you are sensitive. It might help.
Withdrawal from these can be a big problem so weighing pros and cons carefully is needed, but sometimes it helps.
You could also try hypnosis, or other alternative modalities, or even supplements like 5 HTP. An alternative doctor can test your cortisol levels, your serotonin levels, your hormone levels, etc. too and see what else might be done. Good luck.
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