limiting activities

[Guest guest]

It is often hard for anyone doesn't either have a chronic illness themselves or a loved one who deals with a chronic illness to understand the fatigue that so often goes along with chronic illness. Those of us who do deal with this know the price we often pay for overdoing it. That price can range anywhere from a day of being more tired or having more pain than normal to a long hospital stay. Often people take things too personally when you turn down an invitation. At first I felt like I had to explain myself. However, I often think when you try to explain yourself, it only makes things worse. The people who feel you owe them an explanation when you turn down a social invitation will never understand anyway, so why waste your energy trying to explain things. The people who do truly love and care for you and have some understanding of what dealing with a chronic illness entails would never ask for or expect an explanation. They immediately understand that it is nothing personal when you must decline. They also understand that even if you must decline 99 times out of 100, you still appreciate them thinking of you and the invitation. They understand that you may very well still want them to extend the invitation so that the 1 time out of 100 when you are feeling well and have the energy, you can participate in social activities, outings, or just life in general.

There will always be those who just cannot understand why we can sometimes manage a day full of activities and other times even a 30 minute trip to Walmart is more than we can handle. I've had a friend tell me on several occasions that

'it's not like you really have to do anything, it's just a movie'

or 'it's just going to dinner'

or 'sit around at my house just the same as you can at yours'.

This was the friend that I really felt like I had to try and explain myself to.

I finally quit trying. If I don't feel like accepting an invitation, I simply say no and leave it at that. I don't owe anyone an explanation! This friend doesn't seem to get it that family activities come ahead of simple social activities. I can't help that. My family (and extended family) do come first. When my daughter is home from college, I may push myself a bit harder so that I'm up to dinner out, a short shopping trip with my daughter, etc. If it's Father's Day, Mother's Day, a family member's birthday, etc., I may also push myself a little more than I would if it was simply an invitation to dinner with my parents, sis, etc.

I really do consider this friend and her husband and kids almost family. We include them in many family get togethers. I pushed myself to see to it that I was at her little boy's birthday party and that I brought my nephew (they are both 7 and only 3 days apart and they both play so wonderfully together that it is really fun to have the two of them together) to the party because my brother-in-law was out of town on a business trip and sis had already committed to a scuba diving class. I thoroughly enjoyed the birthday party (as did my nephew) but by the time I'd spent 4 hours outside at a kids' party, I was pooped. You know the drill -helping to see the kids got fed, intercepting disagreements, just typical birthday party stuff. My friend was not at all happy that I didn't want to go out for dinner and a movie that evening. This was one of the times that she told me 'it's not like you have to do anything physical, it's just dinner and a movie, you just have to sit there.' I told her I was tired, my nephew was tired, and the only place I wanted to sit was curled up in my recliner with my jammies on and my electric throw to keep me warm! Now, mind you, in addition to just dealing with the fatigue of several chronic illnesses, I'd had my nephew the previous night, also. We had been at my friend's house til midnight. After we got home, my nephew had some sort of allergic reaction and had problems breathing. (my sis had him tested for allergies after this and we found he is very allergic to bees and fire ants. we think he probably got bit by fire ants or something because he had welts all over his legs the next day. He now has to have an epi-pen at all times as they said the reactions will likely be worse the next time.) He was fine after I got him to sit up and gave him benadryl. However, I was concerned so I laid with him and watched cartoons til after 3 in the morning. It was around 4 a.m. when I got in my bed and I probably only slept a couple of hours.

Anyway, this was one of the last times that I bothered trying to explain why I didn't want to accept an invitation. Once I quit trying to explain myself, my friend finally got the hint and now when I decline she just accepts it and doesn't press for a reason or try to tell me why I ought to be able to do whatever it is she wants me to do.

My whole point to this is that if other people want to think you are selfish for saving your energy for the things that are most important to you and your loved ones, then so be it. Perhaps if they walked a week in our shoes, they might begin to get it. Until then, quit worrying about what they think! Some people get it and others just never will!

Hope this finds everyone having a good weekend and able to do some of the things you'd like to do with family and/or friends.

W

[Guest guest]

, have you considered writing a book on Chronic illnesses? You have stated it simply, yet perfectly. Well said!

Debby

[ ] limiting activities

It is often hard for anyone doesn't either have a chronic illness themselves or a loved one who deals with a chronic illness to understand the fatigue that so often goes along with chronic illness. Those of us who do deal with this know the price we often pay for overdoing it. That price can range anywhere from a day of being more tired or having more pain than normal to a long hospital stay. Often people take things too personally when you turn down an invitation. At first I felt like I had to explain myself. However, I often think when you try to explain yourself, it only makes things worse. The people who feel you owe them an explanation when you turn down a social invitation will never understand anyway, so why waste your energy trying to explain things. The people who do truly love and care for you and have some understanding of what dealing with a chronic illness entails would never ask for or expect an explanation. They immediately understand that it is nothing personal when you must decline. They also understand that even if you must decline 99 times out of 100, you still appreciate them thinking of you and the invitation. They understand that you may very well still want them to extend the invitation so that the 1 time out of 100 when you are feeling well and have the energy, you can participate in social activities, outings, or just life in general.

There will always be those who just cannot understand why we can sometimes manage a day full of activities and other times even a 30 minute trip to Walmart is more than we can handle. I've had a friend tell me on several occasions that

'it's not like you really have to do anything, it's just a movie'

or 'it's just going to dinner'

or 'sit around at my house just the same as you can at yours'.

This was the friend that I really felt like I had to try and explain myself to.

I finally quit trying. If I don't feel like accepting an invitation, I simply say no and leave it at that. I don't owe anyone an explanation! This friend doesn't seem to get it that family activities come ahead of simple social activities. I can't help that. My family (and extended family) do come first. When my daughter is home from college, I may push myself a bit harder so that I'm up to dinner out, a short shopping trip with my daughter, etc. If it's Father's Day, Mother's Day, a family member's birthday, etc., I may also push myself a little more than I would if it was simply an invitation to dinner with my parents, sis, etc.

I really do consider this friend and her husband and kids almost family. We include them in many family get togethers. I pushed myself to see to it that I was at her little boy's birthday party and that I brought my nephew (they are both 7 and only 3 days apart and they both play so wonderfully together that it is really fun to have the two of them together) to the party because my brother-in-law was out of town on a business trip and sis had already committed to a scuba diving class. I thoroughly enjoyed the birthday party (as did my nephew) but by the time I'd spent 4 hours outside at a kids' party, I was pooped. You know the drill -helping to see the kids got fed, intercepting disagreements, just typical birthday party stuff. My friend was not at all happy that I didn't want to go out for dinner and a movie that evening. This was one of the times that she told me 'it's not like you have to do anything physical, it's just dinner and a movie, you just have to sit there.' I told her I was tired, my nephew was tired, and the only place I wanted to sit was curled up in my recliner with my jammies on and my electric throw to keep me warm! Now, mind you, in addition to just dealing with the fatigue of several chronic illnesses, I'd had my nephew the previous night, also. We had been at my friend's house til midnight. After we got home, my nephew had some sort of allergic reaction and had problems breathing. (my sis had him tested for allergies after this and we found he is very allergic to bees and fire ants. we think he probably got bit by fire ants or something because he had welts all over his legs the next day. He now has to have an epi-pen at all times as they said the reactions will likely be worse the next time.) He was fine after I got him to sit up and gave him benadryl. However, I was concerned so I laid with him and watched cartoons til after 3 in the morning. It was around 4 a.m. when I got in my bed and I probably only slept a couple of hours.

Anyway, this was one of the last times that I bothered trying to explain why I didn't want to accept an invitation. Once I quit trying to explain myself, my friend finally got the hint and now when I decline she just accepts it and doesn't press for a reason or try to tell me why I ought to be able to do whatever it is she wants me to do.

My whole point to this is that if other people want to think you are selfish for saving your energy for the things that are most important to you and your loved ones, then so be it. Perhaps if they walked a week in our shoes, they might begin to get it. Until then, quit worrying about what they think! Some people get it and others just never will!

Hope this finds everyone having a good weekend and able to do some of the things you'd like to do with family and/or friends.

W

[Guest guest]

,

Your timing was really interesting. I am taking a break from grading final exams. The course I taught this summer was on the Americans with Disabilities Act Title 1-workplace accommodation provisions and the exam had several parts, essentially to look at lawsuits filed by individuals with disabilities and judge the merit of the case and make corrections that would lead to a successful resolution. Essentially the students did well, but where they did not the students failed to consult with the person who had the disability and consider their view of the situation. Your perspective here catches it perfectly.

BTW I never thought I'd make it through the end of the semester, now to grade these exams, grades are due tomorrow... and you wonder why I get excited about naming my bathtub.

Patty

-----Original Message-----From: tdcc [mailto:tdcc2000@...] Sent: Sunday, August 10, 2003 6:19 PM Subject: Re: [ ] limiting activities

, have you considered writing a book on Chronic illnesses? You have stated it simply, yet perfectly. Well said!

Debby

[ ] limiting activities

It is often hard for anyone doesn't either have a chronic illness themselves or a loved one who deals with a chronic illness to understand the fatigue that so often goes along with chronic illness. Those of us who do deal with this know the price we often pay for overdoing it. That price can range anywhere from a day of being more tired or having more pain than normal to a long hospital stay. Often people take things too personally when you turn down an invitation. At first I felt like I had to explain myself. However, I often think when you try to explain yourself, it only makes things worse. The people who feel you owe them an explanation when you turn down a social invitation will never understand anyway, so why waste your energy trying to explain things. The people who do truly love and care for you and have some understanding of what dealing with a chronic illness entails would never ask for or expect an explanation. They immediately understand that it is nothing personal when you must decline. They also understand that even if you must decline 99 times out of 100, you still appreciate them thinking of you and the invitation. They understand that you may very well still want them to extend the invitation so that the 1 time out of 100 when you are feeling well and have the energy, you can participate in social activities, outings, or just life in general.

There will always be those who just cannot understand why we can sometimes manage a day full of activities and other times even a 30 minute trip to Walmart is more than we can handle. I've had a friend tell me on several occasions that

'it's not like you really have to do anything, it's just a movie'

or 'it's just going to dinner'

or 'sit around at my house just the same as you can at yours'.

This was the friend that I really felt like I had to try and explain myself to.

I finally quit trying. If I don't feel like accepting an invitation, I simply say no and leave it at that. I don't owe anyone an explanation! This friend doesn't seem to get it that family activities come ahead of simple social activities. I can't help that. My family (and extended family) do come first. When my daughter is home from college, I may push myself a bit harder so that I'm up to dinner out, a short shopping trip with my daughter, etc. If it's Father's Day, Mother's Day, a family member's birthday, etc., I may also push myself a little more than I would if it was simply an invitation to dinner with my parents, sis, etc.

I really do consider this friend and her husband and kids almost family. We include them in many family get togethers. I pushed myself to see to it that I was at her little boy's birthday party and that I brought my nephew (they are both 7 and only 3 days apart and they both play so wonderfully together that it is really fun to have the two of them together) to the party because my brother-in-law was out of town on a business trip and sis had already committed to a scuba diving class. I thoroughly enjoyed the birthday party (as did my nephew) but by the time I'd spent 4 hours outside at a kids' party, I was pooped. You know the drill -helping to see the kids got fed, intercepting disagreements, just typical birthday party stuff. My friend was not at all happy that I didn't want to go out for dinner and a movie that evening. This was one of the times that she told me 'it's not like you have to do anything physical, it's just dinner and a movie, you just have to sit there.' I told her I was tired, my nephew was tired, and the only place I wanted to sit was curled up in my recliner with my jammies on and my electric throw to keep me warm! Now, mind you, in addition to just dealing with the fatigue of several chronic illnesses, I'd had my nephew the previous night, also. We had been at my friend's house til midnight. After we got home, my nephew had some sort of allergic reaction and had problems breathing. (my sis had him tested for allergies after this and we found he is very allergic to bees and fire ants. we think he probably got bit by fire ants or something because he had welts all over his legs the next day. He now has to have an epi-pen at all times as they said the reactions will likely be worse the next time.) He was fine after I got him to sit up and gave him benadryl. However, I was concerned so I laid with him and watched cartoons til after 3 in the morning. It was around 4 a.m. when I got in my bed and I probably only slept a couple of hours.

Anyway, this was one of the last times that I bothered trying to explain why I didn't want to accept an invitation. Once I quit trying to explain myself, my friend finally got the hint and now when I decline she just accepts it and doesn't press for a reason or try to tell me why I ought to be able to do whatever it is she wants me to do.

My whole point to this is that if other people want to think you are selfish for saving your energy for the things that are most important to you and your loved ones, then so be it. Perhaps if they walked a week in our shoes, they might begin to get it. Until then, quit worrying about what they think! Some people get it and others just never will!

Hope this finds everyone having a good weekend and able to do some of the things you'd like to do with family and/or friends.

W

[Guest guest]

Debby,

Wow! What a compliment! No, I've never really thought of myself as a writer. My daughter is quite talented in both writing and English. Maybe it is something I should consider. Lord knows I certainly have enough personal experience in dealing with a variety of health issues!

Regardless, you made my day or should I say night as it is 12.22 a.m. here!

thanks,

W

[Guest guest]

Patty,

You really do amaze me! I don't know how you manage to work with all that is going on with your health! Hoep your bathroom is completed soon as I am sure a nice soak in a jacuzzi tub will be lovely! Take care of yourself.

W

[Guest guest]

Hi -Anne,

I just received this fro the Medtronics rep:

<<Hello Jeff,

I do not know this patient situation or why the doc told her that. It is

something I never have heard. For the first 4-8 weeks, depending on the

doc, we do ask that you do not do any excessive bending or twisting so the

lead/device can scare in, or heal in place. However, the goal of these

systems is to be able to feel better, do more activity and lead a better

quality of life. SO, this does sound a bit strange. But, we do not know

the whole story>>

It sounds like this is a quirk of this particular doctor. I wouldn't tell

you to disregard his advise, but I will say that since 6 weeks out I have

been fairly active, exercising, bending, etc. and no increase in pain.

Take care,

Jeff

>From: -Anne Durkee <shantihhh@...>

>Reply-Stimulator

>Stimulator

>Subject: limiting activities

>Date: Wed, 20 Apr 2005 10:47:17 -0700 (PDT)

>

Jeff-NY/PA

jeffreyscharff@...

" Knowledge speaks,

but wisdom listens. " Jimi Hendrix

[Guest guest]

Thank you so much for discussing my situation with your Medronix

Rep. First off, it was one of the two local Medronix Reps that gave

me the instructions for very limited activities IE no stooping,

bending, etc. forever. The second rep said no that is no true you

shouldn't lift heavy things (can't due to 15# limit after IDET) or

reach up too far and really streth. He said that " could " potentisal

dislodge the lead wires.

When I asked the doc about this limitations when I saw him 2 weeks

ago he just smiled and didn't answer. However, I see the doc again

on May 10 and plan to really get answers. My back injury/problem is

3 herniated discs, spinal stenosis at the injury area of L3, L4, and

L5, plus degenerative disc disease. I am 62 and Doc said my discs

are worn out. (Fortunately most people think I am maybe 49 or 50) I

have never been athletic, but have lead an active life traveling for

my job IE either Europe or Asia & India every month.

I only take Mobic, no pain meds! I refuse to take narcotics again.

I want my brain clear. I do use meditation and a sort of bio-

feedback approach to pain, plus breathing and centering. I was

involved in bio-feedback development studies when I attended

Stanford in the 60's.

Hopefully now that I am learning to fine tune the control pulses

etc. the rib pain is gone and I am getting great relief in my lower

back. I am going to start applying for jobs again! No I am not

telling my age, as my expertise in my field is such it shouldn't

mater and they don't need to know VBG

-Anne

> Hi -Anne,

> I just received this fro the Medtronics rep:

> <<Hello Jeff,

>

> I do not know this patient situation or why the doc told her

that. It is

> something I never have heard. For the first 4-8 weeks, depending

on the

> doc, we do ask that you do not do any excessive bending or

twisting so the

> lead/device can scare in, or heal in place. However, the goal of

these

> systems is to be able to feel better, do more activity and lead a

better

> quality of life. SO, this does sound a bit strange. But, we do

not know

> the whole story>>

>

> It sounds like this is a quirk of this particular doctor. I

wouldn't tell

> you to disregard his advise, but I will say that since 6 weeks out

I have

> been fairly active, exercising, bending, etc. and no increase in

pain.

> Take care,

> Jeff

>

>

>

> >From: -Anne Durkee <shantihhh@S...>

> >Reply-Stimulator

> >Stimulator

> >Subject: limiting activities

> >Date: Wed, 20 Apr 2005 10:47:17 -0700 (PDT)

> >

>

>

> Jeff-NY/PA

> jeffreyscharff@m...

>

> " Knowledge speaks,

> but wisdom listens. " Jimi Hendrix

>

>

>

>

[Guest guest]

Jeff,

I am glad that you found some information on this subject because I was getting

rather nervous about it. It was making me second guess my decision to have it

done. Thanks for providing clarification on this.

limiting activities

>Date: Wed, 20 Apr 2005 10:47:17 -0700 (PDT)

>

Jeff-NY/PA

jeffreyscharff@...

" Knowledge speaks,

but wisdom listens. " Jimi Hendrix

[Guest guest]

Guess some doctors and some Medronix reps are very conservative!

I am now 2 months post op and beginning to be able to do things, not

learning over or squating but to be more active.

I finally have the unit adjusted so my ribs don't hurt!

-Anne

> Jeff,

> I am glad that you found some information on this subject because

I was getting rather nervous about it. It was making me second

guess my decision to have it done. Thanks for providing

clarification on this.

>

>

> limiting activities

> >Date: Wed, 20 Apr 2005 10:47:17 -0700 (PDT)

> >

>

>

> Jeff-NY/PA

> jeffreyscharff@m...

>

> " Knowledge speaks,

> but wisdom listens. " Jimi Hendrix

>

>

>

>

[Guest guest]

Anne,

What was your back situation prior to the stimulator? I have some concerns

about the stimulator more and more as I read the " problems " people are having.

I am scheduled for a consultation in May with a new surgeon. I will definitely

bring up the reaching and bending. As well as the changes of me having rib

pain. I was scheduled to have my trial on May 17th, but my surgeon cancelled

and left town. Now, I am starting from scratch.

- Massachusetts

limiting activities

> >Date: Wed, 20 Apr 2005 10:47:17 -0700 (PDT)

> >

>

>

> Jeff-NY/PA

> jeffreyscharff@m...

>

> " Knowledge speaks,

> but wisdom listens. " Jimi Hendrix

>

>

>

>

[Guest guest]

After reprogramming again the rib pain is gone!

Before the spinal stimulator I couldn't stand for more than 5-10

minutes without excruciating pain and had to sit or lay down.

After I can and do stand, walk around for 1 1/2 hours without pain.

After 2 hours I need to sit down.

I'd say that is quite an improvement.

My painb is maybe 50-75% less all the time.

I am sleeping much better.

So what if I can't realllly stretch.

I am being able to squat half way and get things in and out of the

dishwasher.

Next is the garden...............

I want to try sitting on the edge of my raised beds and see what I

can do!

I am 2 1/2 weeks post op.

-Anne

> > Jeff,

> > I am glad that you found some information on this subject

because

> I was getting rather nervous about it. It was making me second

> guess my decision to have it done. Thanks for providing

> clarification on this.

> >

> >

> > limiting activities

> > >Date: Wed, 20 Apr 2005 10:47:17 -0700 (PDT)

> > >

> >

> >

> > Jeff-NY/PA

> > jeffreyscharff@m...

> >

> > " Knowledge speaks,

> > but wisdom listens. " Jimi Hendrix

> >

> >

> >

> >

[Guest guest]

Sounds like the stimulator was the way to go for you! I am pleased that you are

improving! I hope you get your wish and are able to garden!

Thanks for the advice.

limiting activities

> > >Date: Wed, 20 Apr 2005 10:47:17 -0700 (PDT)

> > >

> >

> >

> > Jeff-NY/PA

> > jeffreyscharff@m...

> >

> > " Knowledge speaks,

> > but wisdom listens. " Jimi Hendrix

> >

> >

> >

> >