It seems that how long you have fought this nasty disease is not the issue. Some of us have better therapists don't give up if the first few don't "click" with you. Keep trying and looking until you find one that works well with you. The same goes for the docs. Sometimes longer travel for one of these that you can work well with is worth it!
Also remember that almost all of us have triggers that make some days worse then others. You will learn what yours are. You will also find ways to cope with those days.
Please take care
z

You have an excellent point. The comfort of an animal can help a lot. It can give a sense of almost sympathy. My, very large, white and black Maine Coon cat snuggles with me at night. I've noticed the days/nights when I in more pain he sticks closer to me. And that can be a huge comfort! Gives you a sense of support too. Although I have found cleaning the cat box impossible some days.......lol

Bram - I just want to say I completely get what you are saying. I am one year into it but have it whole body. Those of us on this board get it because we are living it with you. I have also found that a couple of my friends ... weren't friends at all. Rather than fretting over those lost friends,... I have to save my energy to cope day by day. Now I need help to do many things and I hate it. Some friends cannot fathom how bad the pain gets. Tonight is one of those nights; my body is like a flaming inferno. take care,

Thank you so much everyone

I was in a real blue yesterday, and I just found it cathartic to dump all that raw grief on the page. My husband arrived home as I was finishing typing and caught the worst of it, bless him, he was marvellous. He does so much now...

I went through a stage after about six months with this, when I knew it wasn't just a quick fix thing, when I really was depressed I think. I cried nearly every day, didn't go out, hardly talked, was a real mess. After about a fortnight I gave myself a very stern talking to and got on with my life. I still have the odd down day like yesterday lol, but it's very rare now. Mostly I am a sunny side up person.

I too did the adjustment process. I chucked in my job that was all long hours standing and pretty physical, and started doing self-employed work that I can tailor to suit me. I saw a psychologist and talked it all through. I started planning things again, but just made them different things that I could do, I sat my kids down and explain things to them, I told my husband how wonderful he was. Exercise was hard, because I am very competitive, and the physio exercises etc just don't really give you that edge lol! But I love the wii fit type games, I play those with my kids and we get very competitive over that

Yesterday was all about one of those random moments. It was a programme on tv and the woman looked a lot like me, she was whining about how terrible her life was because this man she fancied didn't like her as much, and she was on anti-depressants and 'couldn't cope'. She had her best friend with her 'for support'. I was just so angry initially because I thought how weak and selfish she was, and that she should be jumping up and down for joy at having a body that worked properly. Then I looked at her friend who was with her and seemed nice and normal, and for a split second I wondered why she had so much I didn't but didn't appreciate any of it, wrapped up in the one thing she couldn't have.

I know it's all about reality and acceptance and pacing and adjustment, but yesterday I just cracked a bit and some of the stuff I had put away in a little box in my head sort of leaked out.

But thanks for catching me when I fell...

Bram.

You are not alone in this. There are those days when it does feel like it is going to cave in on you, but those positive thoughts are very powerful! Keep thinking positive all the time and others will see it and so will you. It will help you through this! I have loss just about all my friends. I have one who has stuck around but even that friendship is not the same. I have a daughter who is six and she is starting to realize that "all the other mom's can". It hurts. It is ok to grieve about your past life, but don't dwell on it. I tell myself that I can't change who I am but I can change my outlook. I can look at the fact that even though I walk slow or with a cane or crutches at least I can walk or at least I AM ALIVE to see my daughter grow up. And i am so happy for you that you have your husband! I have no one. My family is not that supportive either. My dad tries but he is not arround much. So be greatful that you do have someone to help you. Because there are people like me who have no one. I have even stopped reading the forum for awhile because it has been hard on me to see that I have to go through this all by myself and raise my daughter all by myself and everything else that has to be done! Some days I can't get out of bed, so on those days I catch up on my good books, or crochet. You really need to think positive and turn your thinking around to get through this disease. And always remember that you are not alone! We are out here going through the same things. I hope this finds you in better spirits!
Angelina
Lots and lots of hugs

So well put Brambledog. You've expressed eloquently exactly what I have been thinking for the last 6 months or so. Not only do I miss my former life, I desperately miss my friends. I had many. Now I am down to one who only visits occasionally and for short time periods. I don't drive; i am in a chair for the most part. Both complicate things.

The pep talk here has done much to pick me up too. Thank you all for your empathy and positive support of Brambledog. I've slipped in and taken a share of the positive spirit. I even went out to dinner this evening with my husband. I have not done much otherwise. I spend time napping or watching television in the bedroom during the day. Then I lay awake at night unable to sleep. My husband doesn't know what to do with me (he is my hero); he remains supportive. My poor dachshund is very confused.

Nuf said. Here is hoping we all have better days ahead. Thank you Brambledog.

I did this for a short time in the first confusing couple of months and it did me no good at all. Not doing anything and just existing during the day meant I hardly slept at all, and consequently felt worse and worse. You do need to break the cycle and start doing things, even if those are only mental efforts, or the CRPS pain just dominates everything. I too have a supportive husband, they are worth gold bless 'em, but seeing us that down when they can't do anything hurts them deeply and they cannot tell us because they fear the CRPS too... Well done for going out, I know how hard it is to just leave the house some days! Just try to do something small every single day...

My main lifesaver was just mentally resolving to get up out of bed every morning at 8 o'clock! I get up, shower, dress and go downstairs. I might not be a whizz during the day, but just being up and dressed feels like a big gesture of defiance. Mentally, it's helped me more than anything else. From there I find myself things to do, I potter when I can, and just feel more like I'm in the human race again I do sleep most nights now, and most days I find something to laugh at. Me sometimes, but hey, I'm not picky

I think the truth is that although we do find ways to pick ourselves up, dust ourselves off and look ahead in life, human nature means that the loss of our former life is always there, somewhere in the background... If we manage to keep those thoughts small and locked away then good for us, but like me when I started this thread, you do have the odd dark day where you just can't do it that day, and the dark stuff tumbles out. I hadn't had a day that bad for months, but when it came it was overwhelming, and I felt so alone I cried out into the darkness.....and you all answered...

Thanks guys.

Bram.

I'm glad that you were able to pick yourself up and brush yourself off, Brambledog.

I think we are all entitled to a little pity party now and again. What sets us off can be something expected (like a holiday spent alone) or unexpected (like that tv show). You have to acknowledge the feelings to begin to deal with them to try to move forward.

It looks like you figured out the important trick of not getting "stuck" in the wallowing stage. BTDT....and it doesn't work

I like Catra's boyfriend's rule.....a one day timelimit

Hey,

I just want to let you know that you're not alone. I've had RSD since I was 14, so it's been about 7 years. I was a very active gymnast. I was nationally ranked for my level. I genuinely loved gymnastics and planned on doing it in college. I'll admit, most of my friends were from gymnastics rather than school since I spent so much time at the gym. Bottom line: I was VERY active and ambitious.

I hurt my foot. It was really a minor injury. However, RSD developed from that during the summer before I started high school. I started high school on crutches and was known as the crippled girl when they realized that I was not getting off of the crutches. I was absolutely miserable. Yes, I did make friends. I never had a problem with that. Heck, without gymnastics, I didn't have many friends (I still kept in contact with gym friends, but I didn't see them much). I started getting better through a day treatment rehab program, but I was also miserable then because I had to go homebound from school, so I didn't see my new friends anymore. By this point, I became so miserable. My mother was - and still is - very controlling and wouldn't let me hang out with my friends. I became quite depressed. I also had a major setback before being discharged from the pt because of a massive reaction to the sun. I had just relearned to walk, but now that was taken away from me. I felt so isolated by that point. I wasn't able to see my friends. I couldn't walk anymore and had to depend on my controlling mother to do stuff. My only independence was that I crawled around the house on my knees. I was pretty awesome at that Anyway, I also forgot to mention that prior to starting pt, the RSD had spread to nearly my whole body (neck, both arms and hands, the entirety of both legs and feet, and back). After the reaction to the sun, my left hand stopped working as well. I felt very much alone and isolated. Everything I cherished (walking, independence, friends, gymnastics, etc.) was taken away from me. I became very depressed. Very very depressed. My big turn around was when my dad basically rescued me from my mother's house and I moved in with him and my stepmom (I was 16 at the time). By this point, I did start getting better. I didn't relearn to walk again until a little over a year ago (woohoo), but they were there every step of the way. They encouraged me with wanting to hang out with friends and do stuff. They treated me like Nikki, not like the girl with RSD that I was known as to my mother and most of the people at school.

By this point, I'm not nearly as depressed. Sure, I have my moments (naturally), but I'm in college and have that to keep me busy. It was hard at first because I had to ditch my previous college plans of going to a college for gymnastics. I also had to base my career plans on my abilities and limitations. I still think about gymnastics a lot. I just know that I would have been able to do it on the college level. I had all of the drive and passion. It's not something that I can just walk away from forever. I do miss it a ton and I go through cycles where I'll miss it a ton, then not think about it too much. Right now, I guess it's pretty apparent that I'm in the "missing it a ton" cycle haha. But yeah, the best advice I can give is that it's okay to reflect on what you did in the past, but do it in a "wow, I rocked" kind of way, not a "man, what if I could still do that" kind of way. I am still working on this admittedly, but I do know that reflecting on it in a way that praises my accomplishments rather than mourns over them does help with my outlook a lot. I've kind of used my passion for gymnastics in a good way. I plan on certifying to be able to judge. This way, I still get to be involved without hurting myself. Also, I help out at the annual meet that's held at my home gym with timing, errands, music, announcing, just talking to my old coaches, etc.

In terms of the burden aspect, I definitely used to feel like this a lot. I've found that once I saw myself and believed in myself as being a not-burden, it helped my outlook a lot. I definitely have days where I just don't want to get out of bed. To my family, that's okay. They don't take it personally and give me my space. I am in college and that's helped a ton. I want to be involved and see it as a means to help myself after college. Also, I have a lot of friends and students who depend on me (tutor assigned to 2 classes each semester to help them with their lab reports/essays/etc...I have to meet with them 4/5 times during the semester...fun times haha) to be there, whether or not I feel well. I also work in admissions and genuinely like what I do and feel that I'm doing a great service to the school. Long story short (I feel like I'm rambling haha), even if you don't feel like going out all the time, it really does help in the long run. I'm not saying go out all the time, but help yourself realize that you aren't a burden. You do still have friends, so they clearly don't see you as a burden. Just remember this and try to live your life as much and fully as possible.

With me it's more for the life I never will have, taught my 3 granddaughters to swim in our pool, used to roll around on the floor with them, took them all to disnyeland. My grandson is 2 1/2 now never even picked him up and I never will let alone do any of the ohter things