Trying to find solutions
Tomorrow I have my appointment with the fibromyalgia specialist (well, he's an internist or something like that, really, but he's supposed to be one of the best fibro doctors there is). I'm really hoping he'll be able to offer some kind of help or solutions to try. The pain, fatigue, disorientation/brain fog, etc. has been pretty bad lately.
In the afternoon tomorrow, an old friend/acquaintance is coming over. I'll most likely be hiring her a couple of afternoons a week to help with light housekeeping, childcare, and general tasks. With DH's recent raise, we think we can hire her for 5 hours a week or a little more--maybe even 10 hours some weeks. Hopefully that will be enough to make a difference.
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Ideally we'd have someone live in who could just be here every day to help out and drive places, and let me go to bed to rest for several hours every day, but that doesn't seem manageable at this point. Unless we found someone who was interested in getting room and board as part of their salary. We've put out some feelers about that (and tried to talk one of our nieces into coming to stay with us if she decides to take a term off college), but we don't seem to have any really strong leads yet.
This afternoon I had to call DH home from work again because I got to the point where I was too ill to take care of the kids. He came home for a couple of hours and let me go to bed, and then I was able to manage again for a while. I hate having to call him and ask him to come home from work. It's been happening far too often this year. Hopefully we can find some solutions that will be more effective to help me feel better, or help us manage anyway.
Morning came and picked me up on Saturday to go and buy dog food from the pet speciality store down the street, and a few essentials at another store. I was still feeling pretty poorly even after going to bed early the night before and sleeping all morning, so I had planned to get an electric cart/wheelchair thingy. But they were all taken. So I leaned on the cart and on the stuff in the aisles, and occasionally sat down on the floor, and made it through the shopping trip.
Morning was so kind and patient with me, even doing things like dropping me off at the door and helping pull me to my feet when I bent down to look at something and my knees locked up. She didn't even mind my grabbing her arm for balance.
But after that, I decided to buy a cane.
It's a nice cane. Adjustable, with a nice good-stability rubber tip. It has a nice padded handle and even a wrist loop.
It's really quite a big help. I hadn't actually been falling down, but I had developed a habit of holding onto things or touching the wall, tables, etc. as I walked by for balance and grounding. The cane helps a lot with that. It took so much energy just trying to deal with the floaty, dizzy, disoriented feeling when I was walking. Having a cane to hold onto makes walking or standing significantly less taxing.
And, when I have to stand in line or otherwise stand still for a few minutes, I can lean on it instead of leaning on a counter or against the wall, or having to sit down on the floor quite so soon. It even works o lean on when bending over, and makes a nice reaching stick to reach things on the floor or up high.
In one way, I feel like, "Wow, canes are great! Everyone should have one! Why didn't I do this sooner?"
I can use the cane when I need it, and leave it at home or in the car when I don't (except that then I may end up without it when I suddenly need it).
What I didn't anticipate was how utterly embarrassed I would feel walking into a roomful of people, some of whom have known me for years, using a cane. We went to a gathering last night for some missonary friends who are home briefly. It was wonderful to see them and others that we know, but I was surprised at how hard it was to be there with a cane.
Not because of them--everyone was wonderful about it. But just because it's like a big neon sign saying "disabled." And I'm not disabled, really, am I? Or at least, I'm only disabled part of the time. Right? Well, I guess it depends on how you define it. I don't want to be disabled. Nobody does.
Usually I pace myself so carefully that even most of my close friends haven't seen me at the points when I'm struggling the most. Partly because usually I stay home and in bed when I'm feeling especially badly. But also because I plan around visits with friends. If I carefully rest up beforehand, I can push through a few hours of looking and sounding pretty normal, and even energetic, even if I've been feeling pretty badly. Even if I crash the moment we leave, or the moment the door closes behind the visitors. But it's been harder lately, because my good spells have been less frequent and more short-lived.
I have been telling myself that, really, you can't look much more disabled than having a service dog. But having a cane is a whole different level. I find myself hoping the need for it won't last long. But, realistically, even if things improve significantly, it's something I'll probably still want to have around for flare-ups indefinitely. And for occasions like getting dental work or chiropractic adjustments that I know will cause immediate pain, stiffness, fatigue, weakness and dizziness.
I've been fighting discouragement a lot lately. But, thankfully, I haven't been struggling with real depression.
When people ask me how I'm doing lately, my answer tends to be something like this:
"Life has been challenging. I'm really struggling with my health. But my husband is amazingly wonderful and supportive, and my kids are great. Most of all, God is good, and He has been so faithful in our lives. He's taking care of us."
And He is.
In the afternoon tomorrow, an old friend/acquaintance is coming over. I'll most likely be hiring her a couple of afternoons a week to help with light housekeeping, childcare, and general tasks. With DH's recent raise, we think we can hire her for 5 hours a week or a little more--maybe even 10 hours some weeks. Hopefully that will be enough to make a difference.
############################
Ideally we'd have someone live in who could just be here every day to help out and drive places, and let me go to bed to rest for several hours every day, but that doesn't seem manageable at this point. Unless we found someone who was interested in getting room and board as part of their salary. We've put out some feelers about that (and tried to talk one of our nieces into coming to stay with us if she decides to take a term off college), but we don't seem to have any really strong leads yet.
This afternoon I had to call DH home from work again because I got to the point where I was too ill to take care of the kids. He came home for a couple of hours and let me go to bed, and then I was able to manage again for a while. I hate having to call him and ask him to come home from work. It's been happening far too often this year. Hopefully we can find some solutions that will be more effective to help me feel better, or help us manage anyway.
Morning came and picked me up on Saturday to go and buy dog food from the pet speciality store down the street, and a few essentials at another store. I was still feeling pretty poorly even after going to bed early the night before and sleeping all morning, so I had planned to get an electric cart/wheelchair thingy. But they were all taken. So I leaned on the cart and on the stuff in the aisles, and occasionally sat down on the floor, and made it through the shopping trip.
Morning was so kind and patient with me, even doing things like dropping me off at the door and helping pull me to my feet when I bent down to look at something and my knees locked up. She didn't even mind my grabbing her arm for balance.
But after that, I decided to buy a cane.
It's a nice cane. Adjustable, with a nice good-stability rubber tip. It has a nice padded handle and even a wrist loop.
It's really quite a big help. I hadn't actually been falling down, but I had developed a habit of holding onto things or touching the wall, tables, etc. as I walked by for balance and grounding. The cane helps a lot with that. It took so much energy just trying to deal with the floaty, dizzy, disoriented feeling when I was walking. Having a cane to hold onto makes walking or standing significantly less taxing.
And, when I have to stand in line or otherwise stand still for a few minutes, I can lean on it instead of leaning on a counter or against the wall, or having to sit down on the floor quite so soon. It even works o lean on when bending over, and makes a nice reaching stick to reach things on the floor or up high.
In one way, I feel like, "Wow, canes are great! Everyone should have one! Why didn't I do this sooner?"
I can use the cane when I need it, and leave it at home or in the car when I don't (except that then I may end up without it when I suddenly need it).
What I didn't anticipate was how utterly embarrassed I would feel walking into a roomful of people, some of whom have known me for years, using a cane. We went to a gathering last night for some missonary friends who are home briefly. It was wonderful to see them and others that we know, but I was surprised at how hard it was to be there with a cane.
Not because of them--everyone was wonderful about it. But just because it's like a big neon sign saying "disabled." And I'm not disabled, really, am I? Or at least, I'm only disabled part of the time. Right? Well, I guess it depends on how you define it. I don't want to be disabled. Nobody does.
Usually I pace myself so carefully that even most of my close friends haven't seen me at the points when I'm struggling the most. Partly because usually I stay home and in bed when I'm feeling especially badly. But also because I plan around visits with friends. If I carefully rest up beforehand, I can push through a few hours of looking and sounding pretty normal, and even energetic, even if I've been feeling pretty badly. Even if I crash the moment we leave, or the moment the door closes behind the visitors. But it's been harder lately, because my good spells have been less frequent and more short-lived.
I have been telling myself that, really, you can't look much more disabled than having a service dog. But having a cane is a whole different level. I find myself hoping the need for it won't last long. But, realistically, even if things improve significantly, it's something I'll probably still want to have around for flare-ups indefinitely. And for occasions like getting dental work or chiropractic adjustments that I know will cause immediate pain, stiffness, fatigue, weakness and dizziness.
I've been fighting discouragement a lot lately. But, thankfully, I haven't been struggling with real depression.
When people ask me how I'm doing lately, my answer tends to be something like this:
"Life has been challenging. I'm really struggling with my health. But my husband is amazingly wonderful and supportive, and my kids are great. Most of all, God is good, and He has been so faithful in our lives. He's taking care of us."
And He is.
Labels: health issues, home, just life
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Posted by purple_kangaroo at 7:54 PM[Permanent link]
3 Comments:
Many hugs and prayers.
And a link to Chewing the Fat, a blog by a man who is a disabled disability activist, who was a disability activist before he became disabled.
I think you'll like his attitude.
More hugs.
Liz, thanks for the recommendation. I enjoyed reading the blog, and it's going on my blogroll.
Yay! I love introducing my friends to my other friends.
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