I writing this because I know you will understand. I just got back from a road trip to see my family. It is about 1000 miles It took me three days to get there and when I did I felt reasonably pain free. (never totally, but you know how that is.) While I was there the subject seemed to come up on how long it took me to get there over and over. I have a large family and every time a new one came over to see me the subject came up again. When I tried to explain why it took me so long they all looked at me like I was crazy. Most felt I should have been able to make it in one day and others said it would be reasonable to stop one night, but two was ridiculous. I guess I felt the peer pressure, so on the way home I drove 12 hours the first day and then another 12 the second day, by the time I walked in my house I went straight to bed and had to spend the entire third day trying to recover. I hurt everywhere. Stabbing pains, shooting pains and fatigue. I know it is my own fault for letting them get to me, but it is so frustrating that they are simply unable to understand the pain I am in.
Thanks for being here.
How frustrating for you. I'm not sure how anyone would expect a person to drive 1000 miles in one day. Wouldn't that be close to 20 hours? That's just dangerous, for someone to drive that long alone. Just tell them you like to take it slow, and that should be that. You've found a way that makes it possible for you to travel so far, that should be enough for them.
Hi Cissy,
I think that people who wonder about what it is like to be you don't know how it is.
You know and they can get over it better than you can.
I have been slow getting the dishes done and my family really doesn't let it bother them but after 2 years of diagnosis and 34 years of marriage my husband did dishes tonight. I really am amazed. Hopefully it doesn't take your family so long to get a clue. I have been unreasonably blunt at times. It doesn't pay.
I really think you have to be your own advocate. You may not be able to get others to understand, but you do control your own speed. They CAN get over it. It is better to be quietly letting them get it,... I think.
Good luck
Dear Cissy,
Others just have no concept, if they do not suffer it, or unless they have been close to someone severely and noticably crippled by it, they just don't get it. My Chiropractor told me IF I could ever travel again, stop every 30 minutes walk, stretch and to really limit my time each day!
Only you know what you can do! If they want to see you that bad, they will have to wait until you can get there!
It's lovely they missed you so much that they wanted you there sooner, don't you think?
Wishing you well,
SK
Thanks for your comments. You all have good points. I'll try not to let their non comprehension bother me in future and take things at my own pace.
I'm new here and I do not have PA but my husband does. You are helping me so much with information like how hard travel is one a person with PA. I hope next time you'll listen to your own wisdom-you seem to have a lot of it!
Like a good friend once told me "We have to be captains of our own spaceship"! He was a Trekkie, of course! ha!
That is so frustrating. Family is supposed to be supportive, so when they look at you like you have 2 heads it's really disappointing! First of all, I'm astonished you could drive 1000 miles AT ALL, much less in 2 days. If I had to do that I'd need A LOT of Prednisone, A LOT of pain meds, and an IV of coffee going! :) And then a stiff drink at the hotel to send me off to sleep.
Hang in there! :)
I agree, it is remarkable you could do it at all. Good for you.
The Spoon Theory popped into my mind. Use it as a key word on this site and it will bring it up. Or Google it. Print it out and send to people who might benefit from it. Of course we all have family members who will still say, "oh I am really not that interested Dear." as my darling 80 year old mother said. I wish I could say her attitude is age related but it isn't......
Be good to yourself. You know what is best for you.
Michael, Thank you for referring me to the spoon theory. It is a good way to explain how we feel. It was touching to read.
Marietta, I used diet Mt Dew instead of coffee. :) Then swimming at hotel to unwind. Stiff drink sounds good, but my Dr is adamant about NO alcohol.
I appreciate the comments. They all help me to feel better.
That’s really tough on you Cissy…its so hard that the people you should be able to rely on the most, just don’t understand…I have developed a much thicker skin over the last couple of years. Mostly I do what’s suits my body best on any given day…if people don’t understand then tough x
Louise, I guess I need to learn to ignore others and do what is best for me. I thought I had that down pretty good, but when you get with brothers and sisters old habits seem to fall into place. I guess I should stop trying to make them understand.
While explaining the things I have been through this past year my Mom interrupted and said that if it had really been that bad how was still going to work. I was speechless! (1, "really been that bad". 2. It never occurred to me to give up and let the people that depend on me down. I know no one is replaceable, but me not being at work for any length of time would be a hardship on those having to cover for me. ) My answer after I opened and closed my mouth like a fish a few times was...you just do.
I think I'll post the spoons thing on Facebook and let my whole family read it. Maybe that will help.
Thanks all!
I’m not surprised you did your fish impression! I’d be speechless too, hang in there and yes post it on FB
Cissy-
Thank you for writing this entry. It is a GREAT reminder for me not to let other people dictate how I should do anything. They don't have to live in this body and do not have to deal w/the after effects of pushing too hard.
A reply I have used recently and repeatedly has been, "you may be right." Which helps me realize it is an act of futility to argue w/people who think they either know whats best for me or who have all of my life answers (ie: family, close friends).
Having others try to tell me what to do often leaves me feeling judged. Know-it-alls generally speaking are over-compensating for something missing in their own lives. Whether people are well-intentioned or not is not the issue. Some folks just don't understand how to be understanding and keep their mouths closed.
I hope you are feeling better now.
Take care of you first and the rest can sort out there own lives.