Jeannie McClelland

What ability would you most want to keep?

32 posts in this topic

Had to think about this one. Each time this disease throws something new at you and you grieve a certain issue with your body, you miss that particular issue and then move on and adapt. I used to love to bike, can't go very far at all anymore. I used to love my long walks, those don't happen anymore. I truly pouted over that one for a long time. But then I move on and realize how much I can still do. I fight back as much as I can but realize my limits. My limits of energy supply get very frustrating as it takes away my time from all the people I love and the outdoors. But compared to so many here, I am dealing with so little and I feel grateful for the good days and great moments with my grandaughter, family and friends. I love my gardening and water sports. I am so glad to live where it is warm and summer is coming. Looking forward to all of summer's pleasures. Susie54

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Energy is no. 1 with me. If I had the energy I could still try to do things even if not done as well. Then positive thinking, sense of humor and no pain. Being alone and isolated is the hardest with chronic illness, whether by choice or happenstance. Keeping the fear factor of the unknown seems also to be a daily weight on most of our shoulders, so finding a spiritual anchor of some sort also helps.

 

And as Shelley said, keeping one's sight is at the top of the list for me also. I've already lost my hearing, taste, touching hurts, etc., so I'd like to keep my eyes and my wits about me.

 

But oddly for myself, I've never felt that connected to my body; I always felt it didn't or wouldn't keep up with me. I often resented having to interrupt an activity to eat, go to the bathroom, groom and maintain 'my carcass.' One of my mottoes is, "We are not our bodies." That gives me great hope for the future ;)


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

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Susie54 - You're absolutely right about grieving the loss. I don't think we always allow ourselves that moment whether from fear or it's too painful but however adaptable we have become loss is still loss.

 

Seton - Welcome to the forum and as you say humour is the best way! :lol: Really what else can you do with a disease as varied as sclero? I mean who ever heard of a disease that makes one part of the body bigger through swelling and another smaller?! I should say welcome to the weird 'n' wonderful word of sclero! Look forward to more posts from you.

 

I had forgotten about the stamina issue, mind you I've always been a sleepy person, my nephew says I should have been born with a bed on my back to save me the trouble of getting in it. Yes it would be great to live a 12 hour time period that was a sleepless zone -- I could do so much if I could stay awake long enough to do it. (Hey we should have a sleepy clickable smile -- mind you we'd wear it out in 5 seconds flat!)

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Definitely the eyesight and hearing. Because of my job and hobbies (writing, piano playing, cooking and quilting), I cherish the continued use of my hands. Almost lost that ability five years ago, but determination, exercise and a great doctor prevailed.

 

I've always been a walker and hiker/backpacker and lost that ability for four years. Now with a great cardiologist on board, I'm back to walking. I've replaced the hiking in the mountains with beaches and lazy fishing streams that the hubby can fish in and I can relax and read while listening to birds and not cars.

 

I've grown to accept no more wine, dairy, greens, and a limited amount of chocolate. I never knew there were so many good cookies out there! :)

 

We are all so very adaptable. Rather than cry over our loses, we can replace them with new things and learn to do it differently. That's what makes us all so unique. A lot of people can't adapt to change, but we can - so Kudos to us all!

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I'm with you, Janey!

 

I've replaced downhill skiing with cross-country. Before everyone starts going "ooohhh, but that's such hard work" I have to tell you it actually uses less energy and is, wait for it, warmer. Honestly! (Think wind chill with speed.)

 

When I'm really cold and tired, I'll go lie down in bed (blanket 'on') and lull myself to sleep thinking of the 'kick and glide' rhythm and the shush, shush sound. When you are doing that for real, your body warms up and the muscles gradually lose their stiffness. You get into the 'zone' and it's almost meditative. Your heart rate slows down, your breathing evens out, you become very, very relaxed. Oops, I nearly nodded off there!

 

I find that if I really want to do something, most often there is a work-around. The one thing that's failed is deep-water sailing. It's not that it's too cold or wet or hard work. It's just that it's thousands of miles to the sea! :lol:

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hands down, easy decision for me, I want my energy back :)

 

I am pretty much in your shoes too Janet.

 

KD


Diffuse Scleroderma Diagnosed March 2009

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Oh Jeannie, this IS a great question!

 

It is so interesting to read all of the posts, too! I read one and think, "That's how I feel, too", or another, "I would NEVER want to lose...".

 

Prior to getting ill and experiencing what we have, I for one, always took for granted so many of my abilities/capabilities.

 

This is how I need to look at this...

 

My mother is legally blind and her grandmother was also blind. I know how much it has limited my mother's abilities to do the thing she always loved...enjoying nature.

Yes, she still has her hearing, so she can enjoy the "sounds" of nature, but she always loved telling us as young kids about "this and that"...various flowers, etc...on our short travels. She loved working crosswords, playing Scrabble, reading...books, letters from friends/family. She does have a special machine she can use to read, but her eyes get strained/tired rather quickly.

 

So, I believe to lose my sight would be what I would not want to lose.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I have not had a lot of internal organ damage, so my perspective may be off, but I want to keep my hands. The changes are just beginning, and I am a quilter, and I would hate to lose my ability to quilt.

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...the ability to play with my grand-daughter and to be able to share in her life. She is only 3, and I have waited so long for her. I have so much to give her and love her so much.

 

HONEY

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Great question Jeannie. I have found myself thinking about "worst case scenario" and the things I will really miss if I lost them. I suppose the worst for me would be my ability to find pleasure and joy somewhere in my day. Without that, life just becomes a chore. I am not wanting more loss of functioning, but the best that I can do is keep focusing on the things I can do, working around the things that are difficult so I can do them in some capacity, and finding joy in as many things a day as I can.

 

It can really crank on my fears to read about what can go wrong with this disease. I do keep reading in small portions because knowledge and information are important. However, I refuse to lie down and die just because I have this disease that might incapacitate me tomorrow. I am alive and kicking today, and for that I am grateful. More than anything, I think this getting this diagnosis has really tuned me into living life in the moment and being fully present at every chance. There may not be as many chances as I had thought there would be.

 

Jill

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I have to agree with many of you - energy and stamina. I have 5 and 8 year old boys and I do worry about being able to take care of them and doing things with them. So tired all the time.

 

Next would be my eyes. My eyes are red, dry and uncomfortable, though the vision hasn't changed much. Just can't wear my contacts anymore.

 

Bless you all.

Michelle

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I have just been newly diagnosed, and I already thought about this very same question. I guess, if I ever get to the point where I would loose the ability to interact or work with animals, that would be the worst. That's something I never want to give up. Honestly, I don't care how I will look like, how tired I am or if my diet would be very limited, but I could not lose my purpose in life. That would be detrimental and it is my biggest fear.

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Eos, I can completely understand where you are coming from. I was misdiagnosed with asthma to begin with and was told that if I got rid of my animals, everything would be just fine. Finding out that I had scleroderma was actually a relief - I couldn't have gotten rid of my 'girls'.

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi everyone, wonderful answers. Loved reading them all.

 

I have had localized scleroderma for 13 years now, and I'm in a pretty good condition but it's getting worse all the time: the skin is getting tighter around my left ankle and everywhere else on the left side of my body. To me, losing the ability to move would probably be the worst thing to happen, as I love dancing a lot. That's my way to forget my troubles and sorrows. I take ballet lessons, I teach dancing and if I have enough spoons I join my friends to clubs sometimes just to dance dance dance till the end of the night. It's my way to express myself, my way to relax. If there should be a day when I can not dance any more, I don't know what I'd do.

 

Emmi

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