posted
can you anyone relate to this thinking? that you
are so so relieved that you somehow managed to
get thru another day of this hell, because
everyday is exactly the same, total misery 24hrs
a day, never any relief, never any fun or smiles
or happiness, just praying and using every bit of
mental strength you can find to cope with so many
terrible symptoms that are there all the time, i
dont want to live life everyday just so relieved
that another day is finished, that is not really
living right? but as long as i feel this this
terible constantly, i dont see how my thinking
will change, i never have anything to look
forward, have not left the house in years, i
would if i could! and just getting slowly worse,
i know it would be good to find something to be
grateful about, but with all my problems, it is
really almost impossible to focus on that, still
i try! any input would be appreciated, thanks
Radha
Posts: 392 | From New York | Registered: Dec 2005
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Radha,
So sorry you have been going through so much pain and suffering for so long.
I notice your profile says "From: New York". My grandparents lived in New York. I always loved to visit them.
I remember the Autumn colors in New York, so beautiful. I remember the brightly colored leaves spinning, floating to the ground. They looked like they were dancing.
I live in Oklahoma now and the Autumn leaves are not as brilliant as New York's. I miss that.
I'm not sure where you are in New York. Are the leaves still on the trees? Are the Autumn colors beautiful this year? Has it snowed yet?
Even if you can't get outside of your house this day, I encourage you to look outside your window and look up. What do you see?
I'm praying a spark of hope will rise up within you and be like a seed planted in the ground that grows stronger and stronger day by day.
Daisy
Posts: 2188 | From Oklahoma | Registered: May 2008
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i have had quite a few days like yours...this disease forces us to play mental games...i agree with daisy's assessment...on top of that adopting a positive attitude(even if you are partly faking) is only going to help you recover.
Keep it simply....what can you do? if you don't think you can take a walk then you never will...but as i alwasy say when i feel that way...screw you Lyme i will do what i want. I will be giving myself this speach this weekend if it makes you feel better....it has been a hellish week for me.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Radha,
I am sorry that you are finding life so void of happiness.
I am wondering if you are treating with an antidepressant?
You said you haven't left the house in a long time. Are you seeing a LLMD?
Do you have severe pain that you need to be evaluated for to help you cope?
My faith is crucial for me to cope.
Whatever your faith may be, is there a spiritual leader you can call who would visit you periodially to help give you hope?
Can you go outside your door and and walk 20 feet?
Then try to walk just a tiny bit further everyday.
Look online for inspirational stories and quotes and read them daily.
Post them around your house.
It is so important to try to adjust your frame of mind from hopeless and pessimistic to hopeful and optimistic.
Medication might be key for you if you are not taking something already that improves your mood/outlook.
Wishing you much better days ahead.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Yes I understand and have those same feelings everyday but I am sorry you are also going through it. This illness is a constant battle and it is so draining the only place anyone wants to hear about it is on a lyme board.
I read your profile and see you have been posting and I am so glad you can at least do that sometimes.
I am basicly home bound like you, as i had no food this week tuesday i ordered two chicken dinners for delivery that lasted me till yesterday. had to pick up a perscription yesterday so on the way back thought i would go to the little grocery store that delivers but I could not do it. for breakfast this morning i had three perogies, thats all i had in the freezer.
I was 53 when i got diagnosed with cfs, i had a great job two little grand daughters and a great social life. I became completely disabled by 57, so fatigued and sick lost all friends and see little of my family and the story goes on and on.
Now they found severe white matter disease, testing for ms but think it is more likely late stage lyme. I listen to people saying be patient it took a lot of years to get here but I think to myself if that is the case i should be well by the time i die (i am now 64). even if i get well i am now old and the grandchildren grown so what life am i supposed to go back too.
I know this must read really depressing but i have a point. I am hoping you get lots of replies because sometimes someone will say something and it is just the right time for you to hear it and it changes your life.
mine was two things, one i started posting on the ms board to learn about ms and their was this one poster who always had these amazing fairy type pictures, the kind of fantasy stuff i have always loved. i commented on them and found out she was an artist. Anyway we started e-mailing (she lives in australia) and she sent some great pictures and also a lot of motivation.
i can not even draw a circle but i signed up for water color painting at a recreation center very near, the classes were perfect time 10am I have had four classes and even though i have yet to stay the full two hours I now have this wierd picture of bull rushes that i did myself.
now my dinning room table is full of books and pencils and paints with how to draw books. there are days and days where i am too fatigued to do anything with it but i keep them open and standing up so that they attract my attention and then there are days i can manage a few minutes.
i look throough the sketch book and i see i am improving, everything looks pretty bad but not as bad as when i started.
I think it was some kind of fate to meet this person.
The other was a comment by a poster somewhere and I guess it was just the right day for me to hear it, they said "I have lyme but i am d*mmed sure that lyme is not going to have me"
keep posting, keep trying and i hope with all my heart that someone will say or do something that will help you get through this.
regards maps ps hope this makes sense
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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bettyg
Unregistered
posted
radha, so sorry to read all you have been going thru for a long time
LAUGH A LOT each day; start reading here and go thru all 500 - 600 jokes, inspirational stories that lymetoo that i have contributed to weekly, etc.
posted
i am so so touched and so grateful for all your
caring replies, i cannot stand at all, so walking
is out of the question, and even though it makes
sense to look out the window, that only depresses
me more, because it reminds me of the outside
world, one cannot be a part of, cannot go out and
see, so i am actually better off when my curtains
are closed, i take alot of pain meds, but it is
so depressing not being able to handle any
antibiotics or even herbs because i get so so
much worse, and i am still getting slowly worse
even now, cannot sleep more than an hour because
of the sweats and chills in sleep that make me
much weaker, can eat so so so little and get so
sick from that coz of POTS and low blood volume,
my parents are my angels and the only reason i am
still here, i am very interested in doing so many
things, even painting or reading but because
symptoms are so so bad, never get to do anything,
i really dont know what to do, how i can feel
like i have the worst flu 24 hrs 7 days a week,
thanks again to all of you, i wish i could be of
some help to some of you,
Radha
Posts: 392 | From New York | Registered: Dec 2005
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Radha,
My heart breaks for you.
It sounds like you have a bad case of babesia too.
I assume you mean that you herx really badly when you take Abx or herbals.
Others have been through this also.
Maybe they will come along and give suggestions.
Sorry to suggest what you have probably already tried, but can your LLMD work with you so that you can take something by starting very, very slowly and working up slowly?
I understand what you are saying about getting worse on meds.
I am hoping your LLMD can support you enough to get you through a terrible herx, so that you can then start to feel better.
Perhaps if you post on the Medical Questions board asking for suggestions from people who herxed horribly on Abx and survived....see what helped them get through it.
You could post which symptoms get so bad that you stopped the meds, and see what others have done.
I am praying that you can do something to get some treatment so that you do not continue to get worse and worse.
Big hugs to you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Today, I just wish my life would be over.
I'm so tired of fighting for every good thing that I get.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Radka, 2roads and others who are in that deep, very dark valley.
Wish I were there to sit quietly with you, perhaps cry with you and pray for a miracle.
I am praying for that miracle for you.
Posts: 2188 | From Oklahoma | Registered: May 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Radka: My prayers are with you at this moment. I have been there. I remember watching the clock all day so I could knock myself out with sleep meds and end the day. I will never forget it. I also have babecia. It is a B. I pray that you can get past this point into the light. You are not alone in this. Kitty
-------------------- Kitty Lyme, Babesia, XMRV virus Diagnosed 2008 Mepron, Zithro, Cepaflexin, Fluconozol, Vitamin, Herb therapy Posts: 65 | From Kansas | Registered: May 2009
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