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