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Two steps forward; One step back; And how this affects one's marriage.

Posted by Beverly on 5/01/00 at 17:04 (019723)

I was so happy my pain was diminishing. And yes, after having overdone it once before and ended up barely able to walk, I have used caution.
Well, today I got to see how far away I am from true recovery.

The dreaded trip to the grocery store. At my worst, two weeks ago I used the electric cart. I figured that would still be a good idea, but I didn't see it anywhere. So, off I went on my own two feet. By the time I got to the checkout line, my right foot was in agony. The good news is that my left foot (the one that is less injured) did fairly well.

So, I'm back to resting. But at least I was able to do my shopping on my two feet without limping - even if it did hurt alot towards the end.

I've read the many postings on 'the rest delimma.' It is true that for those of us who have the good fortune to be able to rest, we really can not fully appreciate what it would be like to have PF and have a career that calls for being on one's feet all the time. I am lucky because most of my work is done sitting and much of it is done from home.

One thing I'm curious about, how has this affected your marriages? You would think given that I am married to someone who has had both knees replaced and survived a heart attack, I would get much empathy on the homefront. I'm not saying my family is totally nonempathethic. For instance, during the couple of weeks I could barely stand to be on my foot or drive, I was 'chauffuered' everywhere I needed to go and all the dishes and laundry were done for me, but in general, I find that friends and family (with the exception of my father) have a hard time understanding why this could hurt so much and take so long to heal when to the naked eye my foot looks normal.

How has this affected your marriages? To be fair to my family, I must seem like a diaster area, because I have had so many different things happen to me in the last couple of years. Fortunately, I have not dealt with all of those things at the same time. But there has been little 'rest' time inbetween them. As soon as one thing clears up, something else begins. (And yes, most of the time the doctor found a diagnosis or underlying cause.) Honey Pie's latest term for me is 'fragile.' I guess that's better than saying I dreamed it all up, but sometimes I wonder if that's the underlying thought.

But I should not complain. I have good insurance and a career that allows me to set my own scheldule. And my father has been wonderful.
He bought my new shoes, and said to hit the Birks store when I go to 'the big city' and buy anything I want. And everytime I turn around, he's asking if there is anything he can do. I guess he is used to 'fragile women' in the family. My mother had MS.

Beverly


Re: Two steps forward; One step back; And how this affects one's marriage.

Donna on 5/01/00 at 17:20 (019724)

I think it's like anything, people don't know what it's like unless they have been there, any because our feet do look normal, with the pain all inside, they don't understand. Unless it's some major thing also people think we can just get over it. My ex husband always felt people with back problems were faking, until one day his back was hurting. To bring up a point I mentioned to him how he felt about these fakes before. He became understanding then, but only to back suffering people. Thank God he's my ex, living with such a perfect person was not fun. So you see they don't know unless they have walked in our shoes! Just keep taking care of yourself, we understand.

Re: Two steps forward; One step back; And how this affects one's marriage.

Kim B. on 5/01/00 at 17:36 (019727)

In a nut shell, it is tough on marriages. Let's face it, the only people who choose to be around sick people are healthcare workers and volunteers ... family members get drafted.

Your family sounds great to me, and it's good that you know to appreciate your work situation. BTW, is your Dad looking to adopt any more children at this point in his life? (He sounds like a jewel.)

Regards, Kim B.


Re: Two steps forward; One step back; And how this affects one's marriage.

alan k on 5/01/00 at 18:10 (019729)

I am lucky I guess because my wife got pf too at the same time as me.
She was not as bad, and got better through self treatments she devised herself, while taking care of me.

On top of that, she is a health care worker! Last thing she wants to do is come home and help me, but she does it.

We are both in survival mode, automatic pilot, due to these health problems and financial problems and my serious career problems and also starting a complicated very small business. I guess that would be trouble for most but we aren't really registering it. It's not the best way to live but better than fighting.

Sometimes she says things about me complaining, so I try not to. I know it seems like you should be allowed that, but how much does it really help- I mean really-- to have someone hear your complaints? A little, I know, but maybe it's not worth it. She is cooking me dinner right now, on her feet, while I sit here typing. That's enough, I guess. She doesn't need to hear how I feel on top of that. I shouldn't complain too much about my feet because it doesn't change it, and given a choice I would rather have the dinner than the groan.

alan k

ps.
Please no one think I am saying we, you, or I are weak if we complain. I always complain here about how others don't understand us or think this is a small thing or we are imagining it or frail or something.


Re: Two steps forward; One step back; And how this affects one's marriage.

john h on 5/01/00 at 18:38 (019734)

donna has it right! if you have not been there you will not understand what pf can do to you. it screws with your mind as well as cause pain. the constant ups and downs puts you to the test! PF is not for sissys!!!

Re: marriage

ChrisO on 5/01/00 at 19:17 (019740)

I could talk for a week about my marriage because, frankly, just about every minute of these last 20 years has been a joy. My husband is not only a pretty supportive guy, he also had PF a couple of years ago. However, his was instantly 'fixed' through traditional surgery. We have yet to figure out if the spur itself was reduced (he thinks so) or if the PF was released (I think so). We gotta phone the Doc on that someday. The difference between us is his flat feet and my way-high arches. Also, I was on my feet WAY MORE than him and allowed my PF to get pretty bad before treating it. (I was rehabing his elderly Mom's house from dawn to dusk for 3 months.......)
Anyway, I'm basically a homemaker and I've let him know that I'll continue to limit my homemaking activities, within reason, so that I can, like him, continue to play baseball on weekends and use my feet for really necessary things (like baseball??) I gave up running, hiking and step a year ago, I don't run the bases after I've hit the ball (I get a substitute runner), I don't play defense for more than three innings and I do serious treatment, like Bob, before and after, and so on. My hubby's very very understanding, good, and supportive. I'm very very lucky!
Just as an addendum...........I played ball yesterday with no soreness. I've had very little soreness today while I've sat in front of the computer for most of it. You may all throw stuff at me if I'm wrong again - but I think the ART may be working. Also, the new orthotics (prescribed by a witch doctor....) were less painful yesterday. I wore them while I sat in the dugout keeping score for my husband.

Re: Two steps forward; One step back; And how this affects one's marriage.

dfeet on 5/01/00 at 21:02 (019744)

i've been out of the loop lately. Great question. I am a healthcare worker, and the 'rest' issue is like the dreaded soup nazi-no rest for you. I am self employed, and so is my husband. He tries to help, but when he broke his foot and i had the acute phase of my PF, I had the burden of house , job, and him. My doc and PT agree that the most effective treatment for me is rest, tak e some time off etc. Well , this week I was 'off'. Yes off doing grocery shopping, cooking , cleaning, laundry, catching up,because I've been working two jobs. My husband's been playing tennis 5-6 nights a week. I can't play because the PF and TTS!!!! Yes he helps a bit-vacuuming,sometimes cooking, cleaning-but equality it isn't. I know I sound harsh, but reality bites. Today while taking a lesson, his back went into spasm, and guess what-he's out of commission,so here I am again-job,house and him. I am just spewing sorry. But at the rate I'm going I'm going to need the rubber room. AT least then I may get some REST!!!! for better or for worse.

Re: Two steps forward; One step back; And how this affects one's marriage.

ChrisO on 5/01/00 at 21:26 (019746)

Oh dfeet dfeet...........yes, my feet hurt and yes, I'm totally feeling sorry for you! Life is so damn frustrating when you HAVE TO DO WHAT YOU HAVE TO DO! And it seems like nobody, least of all you and your life, understands that you can't do what you have to do!
When you know you CAN walk, you DO walk. Why? Because you have to!
It's very very difficult for us to convince ourselves and others that rest really means rest. Others don't really believe us because (a), they don't SEE an injury and (b), they do SEE us doing what has to be done in spite of our problem. It's a Catch-22 squared! That was one good thing I found with the cast and crutches, it practically demands rest and it forces others AND us to be more attentive.
Do you suppose there's a rubber room at the local Hilton?
Remember - everybody here cares. Get yourself a tacky novel and sit in a warm bubble bath reading for an hour or so (after your hubby gets his meds!) - that's the next best thing to the Hilton.

Re: Two steps forward; One step back; And how this affects one's marriage.

Nancy S. on 5/01/00 at 22:12 (019747)

Beverly, setbacks are a real disappointment, but try not to get discouraged. I think they happen to all of us, including those who are much better now than they were in the early days. (I mean, progress still happens despite setbacks. They are the infamous 'learning experiences.')
PF is definitely hard on marriages, no matter what kind of marriage a person is in. It affects so much more than the foot itself: the pain is exhausting both mentally and physically; the times of frustration and sometimes despair can lead to real depression; even small things that were once automatically accomplished become ordeals, not to mention the big things like working esp. if you have to be on your feet (which I do); you can't so easily do anymore the fun or social things with your husband or family, so the feeling of togetherness that comes from those activities suffers (you should have seen me on our camping trip last summer, 3 months into my PF -- all I could do was sit around the fire or sleep in the tent, day and night; I was miserable). And I think the mind becomes dulled from the pain, and you're in this awful mental limbo: 'When am I going to get better?' 'AM I going to get better?' 'What should I do right now, in an hour, tomorrow, next week, to get better?' There's a lot of fear and uncertainty involved, and I think it removes you emotionally or psychologically from your relationships, including with friends. And last but not least, there's the financial strain. My husband and I are both self-employed, and there has been zero financial backup for my situation.
My husband is a very understanding and kind person, and we are very tuned in to each other, so for the first few months that I had PF he was completely supportive (even during that wretched camping trip). And he is back to being completely supportive now. But we had a real rough patch in the middle, when he got tired of it and of my complaints and fatigue and increasing hopelessness. We had only one major 'fight' -- during which he called me 'sickly'! (Do you think this is worse than 'fragile'? I thought so at the time and was angry and hurt.) During this time we had to figure out how to deal with our crumbling financial situation, etc. It was no fun. But he came out of it, and I think one thing that helped was this message board and Scott's PF Book. My husband read a lot here back then, and got a grasp of what we're really dealing with here. So I do feel lucky in my marriage, as I always had before. But like I said above, I doubt there is any marriage that wouldn't go through hard times over something like PF.
The message board has also helped my marriage in that once I found it, I could take many of my complaints and fears here and spare him the dailiness of it. I agree with Alan about that -- even the best of people feel dragged down at times by sickness in their partner, and there's only so much they can take. It's natural. It's not a matter of loving or not loving -- it's just human, I think.
Laurie wrote me recently that her husband went with her to her recent pod. appt. Maybe if you could 'educate' your family by having them at dr. appts., and by showing them this site, it might speed along their understanding.
Do you feel guilty over having had one ailment after another lately? I have felt that way over this and any other problem I had (and still fight that nasty emotion), but at some point during this PF I realized that the guilt made me defensive all day long. It didn't help any of my relationships, not to mention myself. So I've mostly given it up, and find that if I'm not feeling defensive, I keep a hold on my hope and actually make more progress, and it improves everything in the home to boot. Take care, Beverly. I still think you have every reason to be optimistic about a full recovery. --Nancy


Re: ok my turn to vent

Susan S on 5/02/00 at 13:05 (019775)

My hubby has been great when I DO complain. But when I don't remind him, he forgets. I find myself saying 'Have I mentioned that MY FEET HURT?' a lot lately.

I try to have my private pity parties on the ride home from work but this can be dangerous too because I get home in... well, let's just say less than a loving nurturing state of mind.

And lately He has been pushing for surgery. I think he's sick of it and thinks that this is the only option left. Maybe he's right. I'll definately discuss this at my next appointment.


Re: Two steps forward; One step back; And how this affects one's marriage.

wendyn on 5/02/00 at 17:47 (019787)

Hmmm...where to start?

I would not want to see what happens to an already weak marriage if an illness or long term disability strikes. It's hard enough on those with fairly solid relationships.

More poor husband - married a wife 10 years younger than him - and it looks like he'll be pushing me around one day in the wheelchair. Good thing I'm not 10 years older than he is.

I've been extremely fortunate that my family is so understanding. Hubby has had to take over all the things like grocery shopping - and last summer when things were bad I was pretty much dependant on him for everything.

Now we are faced with the very real possibility that whatever I have is 'systemic' and permanent. I'm scratching the rather numb spots on my feet - and this weekend I had a rather scary episode of very sore tingling hands again. This is what has my GP uptight.

I try not to think about it a lot - I see the neurologist at the end of May, so I guess we'll know for sure. Even though the pain in my feet seems to be less - there is still a very real problem and something very wrong with my legs and hands. Most of the time I can convince myself that I'm getting better and it's really nothing - but then weekends like this happen and scare the crap out of me.

Beverley - my best suggestion is to come here a lot for support. We will understand what you're going through. Also look to one or two close friends and hubby if you can. You still need support from people who care about you - and it's important to talk to them if you're feeling like a burden. It's very difficult to go from a life of independence and freedom to a life of discomfot and limitations.

I know Robin shares my feelings that this has been a very humbling and life altering event. I used to get impatient with people who walked too slow.....now I stop and hold the door open for them. I will never take my health for granted again, and I'm much more sensitive to the pain of others.

All things happen for a reason (I believe - although I don't understand), I try to focus on the positive adjustements this has forced me to make - and not dwell on the things I've given up.

Easier said than done...but you have to take it one day at a time...


Re: You all are right & update

Beverly on 5/02/00 at 20:00 (019793)

You all are right. It does not accomplish anything to complain,
and Wendyln, like you, my partner is many years my senior(20+). As hard as this is for even me to believe, this is our third time to be together over fifteen years! Once we dated; once we were married; this time we are semi-living together. (You all probably think I need my head examined as well as my foot!) Incurable romantics. So, I'll try to be less of a baby.

I saw my doctor today. He moved me from 'acute' to 'subacute.' A good sign. He says I still have to stay away from stretching. One thing he did suggest is to take a towel. Put it on the floor - spread it out, and then slowly scruntch it back towards me with my toes. He also says the marble thing is ok, but that's it.

Super klutz that I am on the way home from the doctor, I managed to hurt myself on the electric cart at Walmart! I think it's just a minor sprain since I was going down a narrow ailse and not going very fast. But without even thinking, I started to 'brake' with my foot. Idiotic I know. That was a few hours ago. I'm hoping since I was going very slowly at the time, ice will fix me up. I'm saying a prayer it doesn't swell up. I'd hate to have to call the doctor and report what I did.

No, Nancy, I don't feel guilty about having been ill/injured so much.
But I have done alot of 'why God's.' (And being in ministry does not help me have any more answers.) I tend to think there is something - some eternal truth I'm suppose to be learning.

One thing I have learned is that class differences affect how we respond to illness and our expectations for wellness. I know I'm treading on dangerous ground but here goes. My partner is from a working class background. They never had anything. When you got sick, you dealt with it as best you could. It was survival mode. One just had to keep going. You didn't expect to go through life without pain. I remember many years ago when my mother-in-law fell dangerously ill we had a terrible argument over whether to take her to the hospital. In the end, I was right.

I on the otherhand was raised upper middle class. If I had so much as a sniffle, it was off to the doctor. And being a babyboomer in the age of modern medicine, I grew up thinking that there was a cure for almost anything. My mother faired pretty well with her MS because she did not have to work. And she went to the best doctors -even out-of-state once.

So we come from radically different backgrounds. Example: my hard working stepson (Can I call someone that when we're almost the same age?) hurt his back and had back surgery. He owns his own repair business. He didn't take the time to really heal and let's not even talk about PT. It was right back to work he went as soon as he was possibly able. And guess what, his back still hurts. He makes good money, and I think he could have afforded to take another month off, but his value system did not allow it.

But I will work hard at not whining. As I read reports here about being in pain and having to be on your feet all day, I am constantly reminded how blessed I am that I work part time and set my own hours.

I want to get to the other side of this first, but I'm thinking about writing a first person magazine article when I get in remission. (My undergraduate degree is in journalism.)

Take care,
Beverly



Re: Two steps forward; One step back; And how this affects one's marriage.

Donna on 5/01/00 at 17:20 (019724)

I think it's like anything, people don't know what it's like unless they have been there, any because our feet do look normal, with the pain all inside, they don't understand. Unless it's some major thing also people think we can just get over it. My ex husband always felt people with back problems were faking, until one day his back was hurting. To bring up a point I mentioned to him how he felt about these fakes before. He became understanding then, but only to back suffering people. Thank God he's my ex, living with such a perfect person was not fun. So you see they don't know unless they have walked in our shoes! Just keep taking care of yourself, we understand.

Re: Two steps forward; One step back; And how this affects one's marriage.

Kim B. on 5/01/00 at 17:36 (019727)

In a nut shell, it is tough on marriages. Let's face it, the only people who choose to be around sick people are healthcare workers and volunteers ... family members get drafted.

Your family sounds great to me, and it's good that you know to appreciate your work situation. BTW, is your Dad looking to adopt any more children at this point in his life? (He sounds like a jewel.)

Regards, Kim B.


Re: Two steps forward; One step back; And how this affects one's marriage.

alan k on 5/01/00 at 18:10 (019729)

I am lucky I guess because my wife got pf too at the same time as me.
She was not as bad, and got better through self treatments she devised herself, while taking care of me.

On top of that, she is a health care worker! Last thing she wants to do is come home and help me, but she does it.

We are both in survival mode, automatic pilot, due to these health problems and financial problems and my serious career problems and also starting a complicated very small business. I guess that would be trouble for most but we aren't really registering it. It's not the best way to live but better than fighting.

Sometimes she says things about me complaining, so I try not to. I know it seems like you should be allowed that, but how much does it really help- I mean really-- to have someone hear your complaints? A little, I know, but maybe it's not worth it. She is cooking me dinner right now, on her feet, while I sit here typing. That's enough, I guess. She doesn't need to hear how I feel on top of that. I shouldn't complain too much about my feet because it doesn't change it, and given a choice I would rather have the dinner than the groan.

alan k

ps.
Please no one think I am saying we, you, or I are weak if we complain. I always complain here about how others don't understand us or think this is a small thing or we are imagining it or frail or something.


Re: Two steps forward; One step back; And how this affects one's marriage.

john h on 5/01/00 at 18:38 (019734)

donna has it right! if you have not been there you will not understand what pf can do to you. it screws with your mind as well as cause pain. the constant ups and downs puts you to the test! PF is not for sissys!!!

Re: marriage

ChrisO on 5/01/00 at 19:17 (019740)

I could talk for a week about my marriage because, frankly, just about every minute of these last 20 years has been a joy. My husband is not only a pretty supportive guy, he also had PF a couple of years ago. However, his was instantly 'fixed' through traditional surgery. We have yet to figure out if the spur itself was reduced (he thinks so) or if the PF was released (I think so). We gotta phone the Doc on that someday. The difference between us is his flat feet and my way-high arches. Also, I was on my feet WAY MORE than him and allowed my PF to get pretty bad before treating it. (I was rehabing his elderly Mom's house from dawn to dusk for 3 months.......)
Anyway, I'm basically a homemaker and I've let him know that I'll continue to limit my homemaking activities, within reason, so that I can, like him, continue to play baseball on weekends and use my feet for really necessary things (like baseball??) I gave up running, hiking and step a year ago, I don't run the bases after I've hit the ball (I get a substitute runner), I don't play defense for more than three innings and I do serious treatment, like Bob, before and after, and so on. My hubby's very very understanding, good, and supportive. I'm very very lucky!
Just as an addendum...........I played ball yesterday with no soreness. I've had very little soreness today while I've sat in front of the computer for most of it. You may all throw stuff at me if I'm wrong again - but I think the ART may be working. Also, the new orthotics (prescribed by a witch doctor....) were less painful yesterday. I wore them while I sat in the dugout keeping score for my husband.

Re: Two steps forward; One step back; And how this affects one's marriage.

dfeet on 5/01/00 at 21:02 (019744)

i've been out of the loop lately. Great question. I am a healthcare worker, and the 'rest' issue is like the dreaded soup nazi-no rest for you. I am self employed, and so is my husband. He tries to help, but when he broke his foot and i had the acute phase of my PF, I had the burden of house , job, and him. My doc and PT agree that the most effective treatment for me is rest, tak e some time off etc. Well , this week I was 'off'. Yes off doing grocery shopping, cooking , cleaning, laundry, catching up,because I've been working two jobs. My husband's been playing tennis 5-6 nights a week. I can't play because the PF and TTS!!!! Yes he helps a bit-vacuuming,sometimes cooking, cleaning-but equality it isn't. I know I sound harsh, but reality bites. Today while taking a lesson, his back went into spasm, and guess what-he's out of commission,so here I am again-job,house and him. I am just spewing sorry. But at the rate I'm going I'm going to need the rubber room. AT least then I may get some REST!!!! for better or for worse.

Re: Two steps forward; One step back; And how this affects one's marriage.

ChrisO on 5/01/00 at 21:26 (019746)

Oh dfeet dfeet...........yes, my feet hurt and yes, I'm totally feeling sorry for you! Life is so damn frustrating when you HAVE TO DO WHAT YOU HAVE TO DO! And it seems like nobody, least of all you and your life, understands that you can't do what you have to do!
When you know you CAN walk, you DO walk. Why? Because you have to!
It's very very difficult for us to convince ourselves and others that rest really means rest. Others don't really believe us because (a), they don't SEE an injury and (b), they do SEE us doing what has to be done in spite of our problem. It's a Catch-22 squared! That was one good thing I found with the cast and crutches, it practically demands rest and it forces others AND us to be more attentive.
Do you suppose there's a rubber room at the local Hilton?
Remember - everybody here cares. Get yourself a tacky novel and sit in a warm bubble bath reading for an hour or so (after your hubby gets his meds!) - that's the next best thing to the Hilton.

Re: Two steps forward; One step back; And how this affects one's marriage.

Nancy S. on 5/01/00 at 22:12 (019747)

Beverly, setbacks are a real disappointment, but try not to get discouraged. I think they happen to all of us, including those who are much better now than they were in the early days. (I mean, progress still happens despite setbacks. They are the infamous 'learning experiences.')
PF is definitely hard on marriages, no matter what kind of marriage a person is in. It affects so much more than the foot itself: the pain is exhausting both mentally and physically; the times of frustration and sometimes despair can lead to real depression; even small things that were once automatically accomplished become ordeals, not to mention the big things like working esp. if you have to be on your feet (which I do); you can't so easily do anymore the fun or social things with your husband or family, so the feeling of togetherness that comes from those activities suffers (you should have seen me on our camping trip last summer, 3 months into my PF -- all I could do was sit around the fire or sleep in the tent, day and night; I was miserable). And I think the mind becomes dulled from the pain, and you're in this awful mental limbo: 'When am I going to get better?' 'AM I going to get better?' 'What should I do right now, in an hour, tomorrow, next week, to get better?' There's a lot of fear and uncertainty involved, and I think it removes you emotionally or psychologically from your relationships, including with friends. And last but not least, there's the financial strain. My husband and I are both self-employed, and there has been zero financial backup for my situation.
My husband is a very understanding and kind person, and we are very tuned in to each other, so for the first few months that I had PF he was completely supportive (even during that wretched camping trip). And he is back to being completely supportive now. But we had a real rough patch in the middle, when he got tired of it and of my complaints and fatigue and increasing hopelessness. We had only one major 'fight' -- during which he called me 'sickly'! (Do you think this is worse than 'fragile'? I thought so at the time and was angry and hurt.) During this time we had to figure out how to deal with our crumbling financial situation, etc. It was no fun. But he came out of it, and I think one thing that helped was this message board and Scott's PF Book. My husband read a lot here back then, and got a grasp of what we're really dealing with here. So I do feel lucky in my marriage, as I always had before. But like I said above, I doubt there is any marriage that wouldn't go through hard times over something like PF.
The message board has also helped my marriage in that once I found it, I could take many of my complaints and fears here and spare him the dailiness of it. I agree with Alan about that -- even the best of people feel dragged down at times by sickness in their partner, and there's only so much they can take. It's natural. It's not a matter of loving or not loving -- it's just human, I think.
Laurie wrote me recently that her husband went with her to her recent pod. appt. Maybe if you could 'educate' your family by having them at dr. appts., and by showing them this site, it might speed along their understanding.
Do you feel guilty over having had one ailment after another lately? I have felt that way over this and any other problem I had (and still fight that nasty emotion), but at some point during this PF I realized that the guilt made me defensive all day long. It didn't help any of my relationships, not to mention myself. So I've mostly given it up, and find that if I'm not feeling defensive, I keep a hold on my hope and actually make more progress, and it improves everything in the home to boot. Take care, Beverly. I still think you have every reason to be optimistic about a full recovery. --Nancy


Re: ok my turn to vent

Susan S on 5/02/00 at 13:05 (019775)

My hubby has been great when I DO complain. But when I don't remind him, he forgets. I find myself saying 'Have I mentioned that MY FEET HURT?' a lot lately.

I try to have my private pity parties on the ride home from work but this can be dangerous too because I get home in... well, let's just say less than a loving nurturing state of mind.

And lately He has been pushing for surgery. I think he's sick of it and thinks that this is the only option left. Maybe he's right. I'll definately discuss this at my next appointment.


Re: Two steps forward; One step back; And how this affects one's marriage.

wendyn on 5/02/00 at 17:47 (019787)

Hmmm...where to start?

I would not want to see what happens to an already weak marriage if an illness or long term disability strikes. It's hard enough on those with fairly solid relationships.

More poor husband - married a wife 10 years younger than him - and it looks like he'll be pushing me around one day in the wheelchair. Good thing I'm not 10 years older than he is.

I've been extremely fortunate that my family is so understanding. Hubby has had to take over all the things like grocery shopping - and last summer when things were bad I was pretty much dependant on him for everything.

Now we are faced with the very real possibility that whatever I have is 'systemic' and permanent. I'm scratching the rather numb spots on my feet - and this weekend I had a rather scary episode of very sore tingling hands again. This is what has my GP uptight.

I try not to think about it a lot - I see the neurologist at the end of May, so I guess we'll know for sure. Even though the pain in my feet seems to be less - there is still a very real problem and something very wrong with my legs and hands. Most of the time I can convince myself that I'm getting better and it's really nothing - but then weekends like this happen and scare the crap out of me.

Beverley - my best suggestion is to come here a lot for support. We will understand what you're going through. Also look to one or two close friends and hubby if you can. You still need support from people who care about you - and it's important to talk to them if you're feeling like a burden. It's very difficult to go from a life of independence and freedom to a life of discomfot and limitations.

I know Robin shares my feelings that this has been a very humbling and life altering event. I used to get impatient with people who walked too slow.....now I stop and hold the door open for them. I will never take my health for granted again, and I'm much more sensitive to the pain of others.

All things happen for a reason (I believe - although I don't understand), I try to focus on the positive adjustements this has forced me to make - and not dwell on the things I've given up.

Easier said than done...but you have to take it one day at a time...


Re: You all are right & update

Beverly on 5/02/00 at 20:00 (019793)

You all are right. It does not accomplish anything to complain,
and Wendyln, like you, my partner is many years my senior(20+). As hard as this is for even me to believe, this is our third time to be together over fifteen years! Once we dated; once we were married; this time we are semi-living together. (You all probably think I need my head examined as well as my foot!) Incurable romantics. So, I'll try to be less of a baby.

I saw my doctor today. He moved me from 'acute' to 'subacute.' A good sign. He says I still have to stay away from stretching. One thing he did suggest is to take a towel. Put it on the floor - spread it out, and then slowly scruntch it back towards me with my toes. He also says the marble thing is ok, but that's it.

Super klutz that I am on the way home from the doctor, I managed to hurt myself on the electric cart at Walmart! I think it's just a minor sprain since I was going down a narrow ailse and not going very fast. But without even thinking, I started to 'brake' with my foot. Idiotic I know. That was a few hours ago. I'm hoping since I was going very slowly at the time, ice will fix me up. I'm saying a prayer it doesn't swell up. I'd hate to have to call the doctor and report what I did.

No, Nancy, I don't feel guilty about having been ill/injured so much.
But I have done alot of 'why God's.' (And being in ministry does not help me have any more answers.) I tend to think there is something - some eternal truth I'm suppose to be learning.

One thing I have learned is that class differences affect how we respond to illness and our expectations for wellness. I know I'm treading on dangerous ground but here goes. My partner is from a working class background. They never had anything. When you got sick, you dealt with it as best you could. It was survival mode. One just had to keep going. You didn't expect to go through life without pain. I remember many years ago when my mother-in-law fell dangerously ill we had a terrible argument over whether to take her to the hospital. In the end, I was right.

I on the otherhand was raised upper middle class. If I had so much as a sniffle, it was off to the doctor. And being a babyboomer in the age of modern medicine, I grew up thinking that there was a cure for almost anything. My mother faired pretty well with her MS because she did not have to work. And she went to the best doctors -even out-of-state once.

So we come from radically different backgrounds. Example: my hard working stepson (Can I call someone that when we're almost the same age?) hurt his back and had back surgery. He owns his own repair business. He didn't take the time to really heal and let's not even talk about PT. It was right back to work he went as soon as he was possibly able. And guess what, his back still hurts. He makes good money, and I think he could have afforded to take another month off, but his value system did not allow it.

But I will work hard at not whining. As I read reports here about being in pain and having to be on your feet all day, I am constantly reminded how blessed I am that I work part time and set my own hours.

I want to get to the other side of this first, but I'm thinking about writing a first person magazine article when I get in remission. (My undergraduate degree is in journalism.)

Take care,
Beverly