Hello Everyone,

I am curious. Through the years, I estimate that I've worked with about 10,000 + people, while I was in the ministry. Over the course of that time, I developed many friends. Yet, those relationships have all been casualties due to the disease CRPS. I have found that CRPS has really put a strain on every aspect of my life including my relationships with the people around me. Am I the only one that has had to tell many people that I truly care about goodbye, because I can't keep up with the healthy in terms of maintaining very many friendships. Of the many that I used to interact with I can only manage to maintain only about 5 or six of those relationships, since I can't socially keep up with them, since they are healthy and I am not. In fact, I've been trying to get together with one of my very good friends for quite some time and just today, I told him that he no longer needed to wait for me to feel good enough on a day so we could get together. I would hold nothing against him for moving on without our friendship being what it once was. Tell me, do you also find that this disease also puts a cramp on your relationships too? ! Believe you me, I've had to tell a lot of very good people good-bye, since I can't keep up, and it is not easy! I'm curious to know if I am all alone on this one!!

I'm all ears....

-Spike-

Spike,

We CRPSers have a finite amount of energy that must be thoughtfully doled out, because we pay a high price when we are profligate with our tiny resource. I have been unable to attend any events, which saddens me, but it cannot be helped. I am limited so I must limit.

My daughter came for a short visit and just one late evening had me worn out to the point of near immobility the next day. She and my husband prepared the dinner for a family get together and did all the clean up, yet I was the one who was exhausted.

You mentioned telling people goodbye, something I have not found necessary to do. I feel as if I am just gradually fading away from the social picture. Gone are my former monthly activities with friends, but I am trying out new ones-meditation and hatha yoga.

I cannot stay up late so evenings are out, I cannot spend too much time sitting in one spot so any drive longer than 20 minutes is too much-also goes for movies, the prolonged sitting plus the sound system vibrations-not happening. If I put make-up on and dress in anything more than casual clothes I am more or less finished for the day. Even long phone calls are too much now-I put friends on speaker so I don't have to hold up the phone. I am an energy miser.

Yes I am recovering, but not at a pace that will likely regain my former life. My CRPS revised life looks like the town you pass through in the blink of an eye on your way to somewhere else.

I'm right with you and BioBased on this. I have small fiber neuropathy and even though I am better pain wise than I was when I started this journey 2+ years ago I still cannot make plans with friends or family because this monster always reaches up and says...no, no, no !

Example: Tuesday night my 10 year old grandson had a soccer game. I told his parents I would meet them at the game and bring my grandson (they work in the next town over and his game was there also). I can drive in small spirts just nothing longer. Wound up having a lousy pain afternoon, moaned and groaned all the way there and could not make it past the first set of bleachers. Thank goodness it was his teams bleachers or I would have just sat on the opposite side ! Took a pain pill and kept thinking someone was going to have to leave and drive me home......thank the good Lord the pill kicked in and I actually enjoyed the 2nd half of the game and my grandson scored his first goal and I was there to see it.

I worked at the same place for 26 years before being laid off in late 2012. So many friends there who called all the time wanting to go to lunch. I've said no so many times they just quit calling. I can't blame them. I blame my SFN.

So no you are not alone.....I have a feeling many on this site are in the same boat we are.

I get so tired of asking my kids to go to the grocery store for me because I WANT to go and can't.

Just rambling....thanks for listening.

Debi from Georgia

Debi,
You aren't rambling! This maybe the only place where we can go where people will hear and understand us.

You are lucky that your outing worked out. It is incredibly stressful to be worried that pain could knock you down flat when you should be focused on the moment.

My husband went to a friend's funeral this morning. I could not handle getting ready, never mind the long drive, the church service, the burial and the gathering afterward. I feel awful, but at the same time I know I have to practice extreme self-awareness and self-care.

This is a difficult situation discussing friends. As the country song flows.... People are crazy
And to add insult to injury, I feel a true friend would take the time to just sit and chit chat. Not every day or time, but we are the same people....sort of.
But I can't hold it against those who can't understand thus their lack of being around either.
Social interaction is a very difficult thing.....people change. Kindness though goes a long way with compassion.
Also if we are always talking about our monster (complaining or explaining), grows old for our friends too.....
It is a give and take that healthy 'normal' people don't always achieve.
So what I am trying to say goodbye doesn't necessarily have to be forever. And one good thing with this monster is we get to weed out true friendships.... I always put myself in someone else's shoes not so I can run away but try to understand their view. That way I can honestly agree or agree to disagree with out all the drama.

Debi, thanks for sharing that outing. I've been trying to go to a local minor league baseball game all summer. And look.. whoops, low and behold, their season is over. My CRPS would not let me go this year.. AGAIN!

Yet, the good news is!!! wait.. the Great news is!!! I went out to eat with my son and then to a movie with my daughter yesterday. That was the first half way decent day that I've had, since about early June. I was so thrilled to be able to go. Yet, last night beginning at about 8:00 and then all through the night until about 5:00 a.m. I paid the price for leaving the house. My CRPS has spread through out my entire body. So, my right wrist swelled up and had that deep hot hurt all night long. I just laid still sobbed and celebrated that I was actually able to do something with my son and daughter! I was thrilled and was quite willing to suffer. The reward was so so great. It out weighed the pain.

As far as saying goodbye to my friends, I would say that I am doing better with letting them slip away (or say goodbye) than I used to. I've slowly grown to realize that it is ok for people to come and go due to this disease. And I try not to kick myself in my own pants for not being able to maintain those relationships any longer. But... errrr... honestly!! it really isn't easy. I value these friends. These are some really great people. But, I also realize, I can't schedule and then have to reschedule with them forever due to this disease, and then eventually just have to cancel. That just isn't fair to these great people.

#kicks the empty tin can

-Spike-

Hey Spike....what an awesome day u had ! So happy u got to do that but so sad u had to pay for it. But i totally understand......I might get through the day doing stuff I probably shouldn't and I'll pay for it just like u said.....I moan, groan and cry until hopefully I fall asleep.

I know my friends aren't gone......and I could call almost any day and they would meet me for lunch but the thought of getting ready wears me out. And like said above....talking on the phone wears me out too. (never, ever would have believed that as a teenager, as I was laying on my bedroom floor talking on the phone all night to a boyfriend...and on a land line no less!) I seem to have periods of extreme fatigue with this and it hits like lightening and I have to go to bed.....Right Then. The kids will miss me at the table and I'll be in the bed.....lol....they just laugh at me and ask if there is anything they can do

BioBased......I absolutely understand not being able to go to a funeral. I haven't attended one in years. My husband goes for us but sadly he passed away just 3 short weeks ago on Aug 30th....only 58. I took my pain pills and did all the stuff that was required of me. I felt bad sitting in a chair to greet people as most of them probably had no idea I have this monster. And I almost missed his service ( at which time he would have said "that figures!" ) I laid down and didn't wake up until 5:10 pm and his service was at 6 pm. I was going to wash my hair before I went but that didn"t happen......but I didn't care what I looked like and the service wasn't a half mile away so I got there right at 5:30.

Thank u for giving me some time away on other thoughts and so nice to meet u

Debi from Georgia

Debi,

I'm so sorry to here about the recent passing of your husband. I couldn't even imagine going through life right now without mine. He has been an absolute blessing and has done everything within his abilities to pick up the things that I find so difficult to do anymore. To top it all off, you have kids and grandchildren that, although I am guessing your kids are grown up enough to take care of themselves, still look to you for love, compassion, advice and from time to time some help when you are able.

I am fairly new to all of this. So far, I haven't lost any friends. The close friends that I have know what is going on with me, at least somewhat, so whenever there is something going on, it is usually planned at our house. There have been a few things that were planned as an evening out that I couldn't make it to, but I always encouraged my husband to go to take the time off and enjoy himself. When he does, I constantly receive texts, or calls when he can, throughout the night telling me how much he wishes I was there.

Since this all started I have been out all of 2 times, not including trips to the doctors. Once for my niece's graduation party and the other for my birthday in which a few of my friends set up a campfire with a lounge chair where I could lie down and keep my leg elevated all evening. Both times I spent several days paying for it. It was nice to get out and do something though. I know that those that are close to me understand to some degree of what I am going through so they make an effort to step up and keep the relationship going strong. Those that aren't, well, I only see them once or twice a year, so none of them know anything about what I am going through yet. I will still try to talk to them on the phone from time to time, but chances are they will just drift away.

I've been keeping up with u since u came on NT I use to be pretty active but health and life gets in the way sometimes.

Thank u for the thoughtful words about my sweet Bubba....we were married 35 years....since I was 17 years old. He, like your husband, would call if out in the evening asking how I was and if he needed to come home. Most of the time he had gotten called in to work so it would be kinda stupid for me to ask him to come home but it was sweet of him

I saw many of my old friends at his visitation....most were my work friends but after being there for 26 years u get to know quite a few people....all had been through most of my married life with me and a lot of them knew him personally.

I'm lucky in that I am surrounded by my immediate family......2 children, Luke 35 and Christina 30. I have 4 grandchildren ranging in age from 9 to 15, 3 boys and a girl. Plus my mom lives in an addition she build on to my house last year. Bubba was like a dad to my son-in-law so he's taken it pretty hard like the rest of us. No more words of wisdom from him for he is silent now.

Thanks and I am blessed to haver u all here to talk to.

Debi from Georgia

Debi,

You are in my prayers. Peace be with you. You are a real warrior!

-Spike-