Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

What ability would you most want to keep?


  • Please log in to reply
31 replies to this topic

#21 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 02 April 2009 - 04:56 AM

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

#22 Kathy D

Kathy D

    Silver Member

  • Members
  • PipPipPipPip
  • 242 posts
  • Location:Rocky Mountains USA

Posted 02 April 2009 - 06:20 AM

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

#23 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 02 April 2009 - 07:47 AM

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)

#24 Lyn

Lyn

    Senior Bronze Member

  • Members
  • PipPipPip
  • 32 posts

Posted 02 April 2009 - 08:13 AM

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.

#25 Honey

Honey

    Senior Bronze Member

  • Members
  • PipPipPip
  • 55 posts

Posted 07 April 2009 - 04:55 AM

...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

#26 jillatk

jillatk

    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:Colorado

Posted 07 April 2009 - 06:23 AM

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

#27 beanie

beanie

    Bronze Member

  • Members
  • PipPip
  • 28 posts
  • Location:indiana

Posted 08 April 2009 - 02:11 AM

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

#28 Eos

Eos

    Senior Bronze Member

  • Members
  • PipPipPip
  • 60 posts
  • Location:Western NY

Posted 10 April 2009 - 05:27 PM

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.

#29 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 10 April 2009 - 06:14 PM

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

#30 epasen

epasen

    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts
  • Location:Lohja, Finland

Posted 10 April 2009 - 08:49 PM

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

#31 pieski

pieski

    Senior Bronze Member

  • Members
  • PipPipPip
  • 30 posts

Posted 11 April 2009 - 08:11 AM

Most definitely stamina and the ability to breathe! I can't even walk up a flight of stairs without having to stop 1/2 way. I tried going to 6 flags with my family today and I couldn't even make it up a small hill. Truly a bummer.
~ Teresa~

#32 betty32506

betty32506

    Silver Member

  • Members
  • PipPipPipPip
  • 120 posts
  • Location:Pensacola, FL Extream NW FL_

Posted 14 April 2009 - 05:44 AM

It took a while for me to think this one up. Yep I think remembering is what bothers me most. I don't know how much of this is age related. That is beginning to be a problem. I lose stuff, material things and that's not all. I lose words and things I learned years ago. This year I have to take the written test to renew my driver's license. Frightening!! What if I have a losing problem. What if my memory is uncooperative then. And tension makes things worse. I don't think it impairs my driving but I guess it could. There is one good aspect of selective memory. That is I can watch reruns on TV, recognize that I have seen the program before but don't remember enough about it to keep me enjoying it as it might as well be a new program.
Thinking, that is the problem.
Betty