Taking care of ones kids with CRPS
Well, I’m definitely not a mom, but I do have CRPS as well as 3 young boys (8, 5 & soon to be 3).
I currently am unable to do most things as I have CRPS in both hands. I handle the overnight shift with the younger ones as best I can. My wife is also Wonder Woman. Thankfully, I also have a health care assistant with me every night my wife works. She helps with meals, getting kids ready, etc. I’d be lost without them. Biggest hurdle I found, when dealing with CRPS and kids, is allowing yourself to admit you need help and then accepting help. Whether it’s with meals, errands, etc...accept help. It’ll only help you have a better environment in your home. Just my opinion...
When I was first diagnosed 7 years ago my son was 7. 2 years later I remarried and became a mom of two 9 yr olds, an 11yr old and a 12 yr old. Both mine and my husbands extended family all lived out of state, so it was up to my husband and I to make it work.
In the beginning there were a lot of surgeries, new treatments, and level 10 pain daily. It was Tough! I still carry a lot of guilt about missing out on being the hands on working mom that I was. My husband was my fill in when he wasn’t at work and when he was there were more times than I would like to admit that I would be set up on the sofa and we would have a lot of family movie or game time.
I was going through such a life altering change and I was irritable and easily frustrated. I spent a lot of time apologizing. I am grateful that they weren’t younger, that they had each other and they were getting to independent ages. Assigning chores was and continues to be a huge help. Being honest about how I felt and why that consumed a lot of my time was crucial. Most days I would give them every ounce of energy I had left and by night I would collapse unable to move.
Now at 14, 16 and 17 they have a lot of compassion and willingness to help however they can. I depend on them all and when I have good days I dedicate myself 110% to them. We have found a balance. It isn’t always easy and it has been a journey.
My advice is to be easy on yourself. Accept help and don’t be ashamed to ask for it in any form it comes in. Surround yourself with supportive people that can relate to your struggles. As a mom you may not always be the Mom you want to be, all you can do is try your best.
I will say that being a mom has made me stronger. If it wasn’t for my kids I would not have been as motivated and determined to continue to fight.