I am having a hard time today.. of course the pain is always haunting, so far my attempt to assimilate it is moderately successful, but still having issues.
My inabilities and pain affect other areas aside from just mobility,sanity, sleep, it affects how I want to be with my wife and kids. Today half my kids went to friends house, they other half to the beach with, mom. Im home with my thoughts alone, and I find myself unable to reconcile with myself. I used to go to the beach with them after a long day at work, I would load up a couple of my landscaping shovels, buckets. I would then sit in the rocks and sand just at the boarder of the water and beach.I would watch them swim as I dug trenches and made huge mounds of sand and rock, and when they tired of the water they would join me with their tools, these trenches would go for hundreds of feet, sometimes it would attract the attention of other children and then my children and these other beach going children would continue while I sat by the blanket collecting nice rocks and shells.
today is a reminder I can no longer do this. it is a part of my life which has "NO" substitute. and the time lost I can never get back for myself or my children, especially my youngest, he only knows me like this, never a day on my shoulders, in the sand at the beach , helecoptered around, tossed into the air, chases, or adventures in the wild. Ihave nothing to replace these with them. I used to play music with my kids alll the time, but i am having issues finding the song in me to share lately.
I see on this site we usully discuss the disease as it is and the obiviouse difficulties, I find these to be the hardest to live with though, the pain is like the ocean..always active and moving, some days more so than others, and we learn to adapt to the ocean ad fight the storms and as long as you come out the other end we are blessed, but you suffer losses that scar you when you weather the storms, its a deeper pain that you never expect. I wanted to post this here because I know you all understand. I know here I dont need to feel ashamed and will not be judged, Than kyou all for reading this.. and I hope somehow this helps others feel less alone, im not sure how or why, but it hurt to admitt this but felt blether once i shared with all of you. Thank you all

I typed out a reply, and the computer ate it here I go again...

I could have cried for you when I read this, but I think I've run out of tears for this subject. It's all so true....

It is the one area of the many compromises I have had to make that I just can't accept fully. My eldest daughter had the real me, we did so much together, all those fun days in the park, climbing on all the play park equipment, chasing her around, climbing trees, rackng on our bikes, wandering around exploring towns and museums and fields, tickling, helicopter rides, hide and seek... My youngest had that me for the first 7 years or so, but for the last 3 she has had the CRPS-me version....I'm in a better patch this last two months (i know when the colder damp weather comes things will get worse again) but before this bit it's been a rough few years, and I'm very aware that with every year that passes, the memory of that earlier real me will fade, and in time she will only really remember the CRPS version. It breaks my heart.

This condition takes so much from you, but when it steals something so precious from your children it is hard to 'accept'. But this is NOT your fault. You did not choose to have this horrible disease, and if you could make it go away you would do almost anything to have your life back. The fact that you can't just try harder and get better is something only other sufferers really understand...and the hidden horror of this thing, the pain itself, is the invisible part that defines our days but is so hard for those around us to understand.

I took my sock off this evening when my family were here because my foot suddenly switched from ice cold to searing burn. My foot was pink and hot. My mum said "ooh that looks a bit sore love" and carried on with the conversation. You can imagine how it really felt, but I did what we all do, fought back the tears and pretended I was ok. You do what you can.

Keep going, keep doing the best you can. Children understand more than we think, and talking to mine about it has helped us all. My youngest knows why I sometimes have to not do things with her, but of course it makes her sad. My eldest helps me out by doing more with her, but being a teenager herself she has a busy social life and values her 'space'. Bless 'em.

You express this difficult topic so well, I admire your honesty and courage. I hope you can maybe show this to your family so that they can read your feelings and appreciate the husband and father you are. Keep fighting, your children love you no matter what you can or can't do with them, and they will appreciate that you do your best. I'm betting you are your worst critic....

Bram

Hello Painman2009,

It saddens me greatly to read your words and hear your pain - obviously we all wish for each other that we could do or say something to take it all away.. if only we could.

I hope that there are other things you can do to create memories together with your children. Simple things.. a special time where your youngest brings back all the treasures from the beach he or she has gathered and tells great stories of where they found them and what they are. This can be super special for the both of you.

Can you work on a puzzle with your kids? Not all in one setting of course but even just a few minutes each day or a couple of days a week? Let them go shopping to find .. just the right one.. and then you both do it together.

Movie night - topped off with s'mores made in the microwave Yummy & fun.. this has been a special treat in my family for many years during the winter months.

I do hope that you get through this rough spot and that you are able to enjoy time with your children and your wife in ways you never thought about before and that they are more rewarding than ever!

Sometimes it's the simple things we've done together that are the most cherished,
Tessa

This hits right in the heart. as ya'll know I'm going on thirty years now, I was in a second accident, in 98, that gave me a subdural hematoma, discs, andput the rsd into overdrive. I owned two business' one, a 42 acre property that was a camping resort, on top of a Mt, in PA. I lost eveerything to a greedy lawyer, and an evil 2nd wife.
Of course, my children were groomed to take over both, and now are estranged from me. It's been more than a decade, I have a grandson I've never met.
Keep your children close.
I to day don't understand what they don't..

Today is my daughter's BD. I doubt she'd even answer a call....

pete

asb?

My children were all teenagers when I got hurt. They were used to a very busy mom, always at least 2 jobs. I got hurt lost my job, my business, and then soon our home. I now live on a family members farm in a camper with my husband. The youngest takes it the hardest. He blames me for everything, and sadly so do I. If I hadn't spoiled them so much and keep working to spoil them they wouldn't have to face how harsh life is. So all I do everyday is apologize to everyone for getting hurt. I screwed up by spraining my ankle.i should have watched MY STEP. But your kids sound like they are handling things so much greater, they must have the strength of their daddy!

Your beach memory is such a vivid, beautiful story of what was and what is now. Thank You for sharing it. It made me cry and want to applaud at the same time because you so, so get the losses of chronic, painful illness and you so articulately and poetically described them. When our losses become our children's loses, too, it's that pain "deeper than you ever expect." I hope today your heart knows some peace. You blessed the rest of us!