Bedridden

[porque]

Merry Chirstmas everyone,

As I reflect upon this day about the past year and my illness and how last year at this time I was running to the gym at 1 AM to play a late night game of pick up basketball with the guys...(yes I played with the big boys...lol...and they were shirtless which was a perk for me!) Now this Chirstmas...I'll walk my dog...maybe rollerblade...but I am so far away from being the spaz I was last year. I mena wow its almost been a year...I dont feel any better now...but that got me to thinkg...I was never bad off anyway. I mean the day after my sudden onset (wow and I really mean sudden) I went back to school and stayed up that night until 2 am like I always have. I HAVE NEVER BEEN BEDRIDDEN...or even close to it. It's just a nusience...I mean sometimes I feel tired or whatnot...but I never feel like I have to just stop and put my feet up for a while...I can 99% of the time stand and work or whatever with no problem at all. This got me to thinking that if I have any damage it should be mild and in time I should heal completly just because there was so little damage to begin with. But I'm not sure if that is how this disesase works...does ones level of normalacy correlate with the amount of damage done? Anyone hear any information on this? I think I had an autoimmune reaction to the Campylobacter jejuni bacteria commonly found in undercooked meat which can cause a autoimmune reaction and is also asscioated with Gullian Barr Syndrome...which is asscoitated with POTS right? Anyway I was wondering how many people on here have been bedridden at some point of this strange illness? It seems like almost everyone has? Take care.

Tasha

[Dawg Tired]

I was totally bedridden for about 4 months. At the onset I had a rather quick progression of symptoms; started in April, 2002. I was walking 2 miles every morning - a full time job with unlimited overtime, full time college student. Then I started having fatigue > shortness of breath > dizziness > syncopal episodes. One day I couldn't sit up for even 2 hours to go to work. I was stuck in bed for 4 months. Had days when I couldn't watch/listen to TV because the sound/pictures/movement just wore me out. I was total care. Luckily I have the WORLD'S GREATEST HUSBAND! I have gradually improved. Not made a recovery by any stretch of the imagination, but I can walk as far as the living room, watch TV most of the time, and attend church most of the time. The social outlet has been important. Don't know if I answered your question or not but you still need to feel there is hope even if you go through long periods when things are bad. I was trying to make funeral arrangements while I was in a bad phase - I let the worry really consume me for a while! Now I look back and laugh. Oh well - we become quite resilient.

[violahen]

Hi:

I was born with POTS so I can't imagine a sudden onset! How cruel! You have my deepest sympathy. At the same, know that the rough times will be just that, but it doesn't mean that it will be that way forever. I also have periods of time where I am completely bedridden. It is horrible....and the worst part is the "not knowing"...the wondering where things are going from there....

I agree with Dawg Tired that there is always hope....I have had periods of time where I thought I would never feel better....and slowly but surely things got to a better stability.....The sad part for all of us is that our lives are like a constant rollercoaster....and every turn is a surprise...there is no predicting, no planning.

This disease has a mind of it's own.

The physical rollercoaster can do quite a number on the psyche as well....I find that I tend to go through different states of dealing with my illness at different times....sometimes it's total denial....sometimes it's strength and hope....sometimes it's giving in and crawling into bed and not getting out until I really can....that's the hardest one for me....I only recently have learned to allow myself to "give in" once in a while....Giving in does NOT mean giving up....it just means listening to your body and allowing yourself to go through the **** without fighting it.

I wish you all the best!

Don't be too hard on yourself!

Kristen

[Guest tearose]

Tough question to answer...Yes, I have been bedridden for weeks and a couple of times, months. It is not what I dwell on though. I keep thinking I'll get better someday... It is usually after a bad cold or sinus infection that I will cascade downhill and wind up on the sofa or in bed barely able to get to the bathroom. I have also been into the deepest and darkest potshole when feeling that weak. My heart ached for Gayla as she shared that she began planning her funeral. I do understand that moment....It did turn out to me a very major turning point in my journey though.

I was in the potshole and sofa-ridden and weak. I had help going around the house from a four prong cane only when I was alone and needed to get to the bathroom. I could only go upstairs with help and only went up to bed at night and down to the sofa in the morning. I could not cook, clean, bathe, shop, drive, read, watch tv, look at a computer screen...or have more than a 10 minute visit from a friend. I was extremely short of breath, dizzy, had super high heart rates and looked horrible. I remember thinking to myself, that my life was in order and my family and friends knew I loved them. I thought that my time on this earth was nearing a major change...With tears in my eyes I prayed..."Dear God, please either give me the strength and grace to get stronger or take me." I really meant it! I didn't know how I would ever get off that sofa! Within just a couple of hours of speaking those words I had such a sense of peace come over me...I had let go of all my material and physical attachments and gave my soul over to the powerful forces of the universe to take me where I was to go.

As you see, I am still here!

When I refeel these moments, very powerful moments in my healing journey, I now think this was a special "good" experience. I believe that this was the closest moments of enlightenment, the closest nanoseconds of my contact with the power I call "God".

So, yes my dear friend and fellow traveller, I have spent time bedridden.

They have been some of the toughest and best times of my life.

take care, tearose

[Merrill]

tea, thanks for sharing your very moving story.

you know yourself so well--and have such a beautiful approach to life (and whatever it is that's on the other side).

i hope this dark period turns out to be your darkest

... and that as the days grow longer into 2005, your periods of symptom-free days (or fewer symptoms) also increase. I wish this too for everyone here. (Even you quiet lurkers! )

[Guest tearose]

Gee Merrill,...I'm just one of the bunch here and as you know, everyone has those stories...you remind me how important sharing our experiences and stories with each other is. I have gotten many valuable insights from others. Thank you for wishing better days for me, there have been many months since my last darkside days...but for Tasha's sake and for all, I just wanted to express that the "darkness" is not to be feared...just delt with as another step on the journey. Being bedridden does not have to be total despair, darkness or bad...we have the ability to make it peaceful, lighted and good.

The whole concept of darkness and light is also intriguing to me...I won't start that train of thought except to say in any rough, difficult time when you are surrounded by darkness...

....rather than trying to get out of the darkness, try bringing the light to where you are.

feeling small but so blessed to have you all, tearose

[Guest Ph03ziX]

Dear Tash

Firstly 'SPAZ' means dork in English.... So I'm trying to picture you differently from how you describe yourself perving at Justin Timberlakes with no shirts on. (Sigh)..sounds like my G/F.

I was bed bound this year for most of it in a cardiac ward for 7 months, only medication, reduction in stress, weight gain, and a change in room temperature(e.g got rid of the summer) , sleep, rest got me out of bed, but I have CFIDS too, so it's rather complex. I'd say fluctuation in any illness, and especially POTS seems common place.

I have to agree when 1 day becomes 1 week becomes 1 month, the alarm bells ring.

Cheers

Ben.