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View Full Version : Realizing that I am getting worse.



debbie-b
03-20-2012, 05:17 AM
My husband and I have moved here to upstate NY, almost seven years ago.
Having lived in Dallas, a very flat area, no hills or mountains, we have really enjoyed our new surroundings.
We have alot of hills and mountains around us.
From the time we moved here, we have been going to parks, Niagara Falls and all the nice hills around us. We go to this one Park, it is called Powder Mills Park, it has a fish hatchery ( you can feed the rainbow trout), it has a somewhat high hill, we call it a small mountain, compared to the flat land in Texas.
Anyway, we go there every year and walk up the hill and enjoy the view.
Every year I have noticed, that is was harder to get to the top, mind you it is a hill, no idea how high it is.
We went last sunday, the weather was great, I barely made it to the top. I was in alot of pain, my hips, knees and ankles, but the shortness of breath, was the worst, it started as soon as we were walking, I did make it up there, but I did not enjoy the view, because I was in misery.
Going down was not so bad, but I couldn't wait to get to sit down in the car.
Off coures after coming home, I was paying dearly, I was in so much pain.
I did take a muscle relaxer and slept for seven hours straight. Woke up, had something to drink and went to bed.
Well realization set in, we know, that it was our last time walking up this hill.
It got harder and harder evey year, but this time was a killer, I can never do this again.
It is hard to actually see, how I am getting worse.

Debbie

I just felt like wining about it.

tgal
03-20-2012, 07:17 AM
Oh Debbie I am so sorry. It is so hard to come to that place of understanding. This disease sucks and i wish I could make it where those hills were easier.

Just know that we are here for you always

DrinkofWtr
03-20-2012, 08:14 AM
That's how I felt when I realized I couldn't camp out anymore because of the cold, the bedroll on the ground, because of having lupus and fibromyalgia. I was never a real active person so I would think it would be absolutely heartbreaking for an active person to realize so many of the activities, sports, running, etc. have to be given up now because of this disease.

debbie-b
03-20-2012, 08:53 AM
Thanks guys,

I knew, that you would understand. It is very hard to take, not being able to do certain things. Things that are so easy to do, when you are healthy.
Plus there is the thought in my mind, what is next? What else can I not do, a year from now? It is very scary.

Debbie

kim,l
03-20-2012, 03:28 PM
dear debbie i felt the same as you but i knew when it was time to use walking frame with a seat on it . this has given me more freedom . i now can go fishing and camping we have a camper trailer and we had to make more adjustments to that by installing more stairs and rails. my husband even built me a heavy duty higher bed so i did not have to struggle to get out of bed. we have hand rails in the shower and the toilet. i have learned we need to adjust it was hard at first to admit this disease was changing me but i will not let it take everything. you need to just adapt and change with it. look at marla she travels all over the world she is my inspiration to keep on going hugs kim.

steve.b
03-20-2012, 05:49 PM
debbie,
remember that it is usually inflamation that causes the problem.
i take anti inflamitories before this type of activity.
also dont drink straight water, use a revitalising water.
one that has magnesium in it.
these 2 tips have helped me to minimise my reaction to exersion.

kim,
i love the attitude.
as saysuzie says........
look for the good.

DrinkofWtr
03-20-2012, 05:50 PM
I hope to get a camper trailer someday! Kim"s right, you do have to adapt the best you can. Even though I can't do the things I used to do, I do enjoy what I can do.

magistramarla
03-21-2012, 12:43 PM
Hey Debbie,
Don't let it get you down! You can still do things - just change the way you do them. It wasn't at all difficult for me to start using my cane, but it was a bit hard to convince myself to start using a wheelchair when I travel. Luckily, Jeff is strong and athletic, and he will happily push me anywhere. He's pushed me up and down hills in San Francisco (China Town was scary!!), all over NYC, out on the piers of Waikiki, all over Tokyo, all over Athens (I was lifted to the top of the Acropolis on a wheelchair lift, then Jeff pushed me to what I wanted to see on top). We still have lots of fun together - he just has to work a bit harder to get me to the sites we want to see. LOL - Conner thinks that he should also be pulling when I'm in my wheelchair, so he adds his strength to give Jeff some help.

I'm very frustrated that I can no longer drive very far from home. I can't drive on the highway at all anymore. I've gotten so that I'm not at all shy about asking for a ride. I still love to go to my gourmet club dinners, and when it's in Carmel, I bum a ride from one of the other members.
I think that it's very important for me to stay involved in the things that are important to me. I can't teach anymore, so I'm involved with the Military Spouses' Club. The rest of the members are all young wives, so I participate in those things that I can, and cheerfully stay home when I can't. I'm NOT going on the excursion next month when they are going rock-climbing for three hours, but I'm sure that I will enjoy the stories and the pictures when we get together in May.
When I have a difficult time getting around, or my voice falters because of the Spasmodic Dysphonia, I use it as a teaching moment to inform those young women, just as I did with my students.

I'm also getting involved with a group that wants to build a service and therapy dog training center here on the Monterey Peninsula. They have asked Conner to be a spokesdog for it. We're happily helping out. We'll be attending a cocktail party fundraiser at NPS next week and then we're invited to a big fundraiser at Pebble Beach Country Club next month. We'll be moving back to Texas long before the facility is ever built, but I'm happy to help with educating the public and fundraising. Besides, Jeff, Conner and I get to have a lot of fun doing it!
So, think of some ways to modify those things that you enjoy doing, and keep doing them!
Hugs,
Marla

steve.b
03-21-2012, 07:16 PM
i love my cyber family.

it is the little comments like marlas that keep me here.

the love and concern we have is very real (and warm).

the way we care for each other, and all around us is an inspiration that has made a difference to my daily life.

thank you WHL.