This afternoon, Nat went out for a bike ride. He hadn’t been gone long when I received a phone call – he’d had an accident and fallen off his bike, and could I come and pick him up.
With CRPS, we constantly have the worry that his body will give a CRPS response to any pain, so I went to pick him up.
He was on the nature strip with blood on his knee, and was as white as a sheet. I got both him and his bike in the car (I have a small hatchback, and I’m amazed the bike fit!). As I started to turn to go home, Nat complained that when his eyes were open, everything was white. He was also shaking. So I turned around and we went right to the GP.
We were seen right away. After lying down for a while, colour came back into his face, however there was a CRPS-like pain reaction! He kept wiggling his toes and chewed on some chewing gum to help keep things under control.
The doctor reassured Nat that it was a normal injury, and that shock was common. The nurse cleaned his knee and dressed it and we headed home.
He’s going to be sore for a while, and we are crossing our fingers it stays as just a sore knee. At least now we have many more things in our tool box to help keep the CRPS under control. If things get bad, we have a physio appointment on Thursday…
It’s funny, we’ve almost forgotten what to do with a normal childhood injury!
Nat is having a pain flare that started last night. He wasn’t planning to be awake to greet the New Year, but he was…
He has spent most of the last day and a half employing all the tools in his toolbox to deal with the pain.
- warm bath
- putting on shoes and socks
Basically it’s keeping on moving and doing all the things he would normally do, just at a slower pace.
It was hard to do this during the afternoon when Nat was at a friends house, but once he got home he was able to have a bath and start working through his toolbox again.
One bit of advice he got from some of his CRPS support friends was to have ice cream! There is a lack of ice cream in our house as we haven’t bought more after Christmas… He also finds that chewy lollies helps.
We didn’t have any lollies in the house either as they’d all been eaten, so I went for a late night run to the shops for some lollies for Nat.
At the moment, we will do whatever we need to so the pain will get under control so he can keep going. After only 2 hours sleep last night, we are hoping he has a better sleep tonight. I hope the lollies are helping….
Nat has has some really good days lately, riding over to his Aunt and Uncle’s place, walking their dog, playing with his cousins, and helping his Uncle make things in his shed. This morning started no different than any other morning. He takes a while to wake, but that’s pretty much the same as every other 15 year old boy!
This morning, we went to church as we do on just about every Sunday morning.
Things started changing as the band geared up to play. The sound had been set in such a way that the bass guitar was louder than usual, or the other musicians were quieter. Nat’s legs are still quite sensitive and he could feel the vibrations of the bass guitar through the floor. It didn’t seem to matter that we were sitting on the other side of the church.
These vibrations caused a minor pain flare in Nat’s legs. He ended up using all the tools in his toolbox to make it through the service. This included having some chewing gum (chewing helps keep his mind off pain), and going for a walk around the block.
He did join in the service, but left the church when it was time to sing the final songs. Standing outside the church, he said he could still feel the bass through his feet!
This afternoon has been quiet. Nat is digging into all the tools in his toolbox in an effort to keep the pain down and prepare him for Christmas tomorrow.
Life with CRPS is certainly a roller-coaster. The main difference is that often you don’t see the ups and downs coming!
We are crossing fingers and toes in the hope that Nat’s pain will settle down and he will have a good day tomorrow.
This morning, we had appointment #3 for the week. This time it was with the Rehab specialist for Nat. We had seen her from time to time when we went for Nat’s physio appointments, but this was the first follow up since his last hospital stay.
We arrived at the hospital early, finding that most of the school traffic was clearer than it normally was in the morning! Usually, an early arrival doesn’t mean much, however this morning the doctor arrived at work just as we did, so we were able to see her at 9.15 instead of 9.30!
She was really pleased with Nat’s progress, especially the fact that he wasn’t using a wheelchair any more. She was amazed that his feet and toes were back to a normal colour and size. The last time she’d seen then they were purple and swollen. Every other time we had seen her, Nat was in socks and shoes.
He is average in height and weight for his age, and all his reflexes are good. We talked about how it wasn’t that long ago when his pain was too high to test his reflexes! Everything else was going well.
Our next follow up is in six months, giving him a good start at school and to see how he’s going. It also means we are still in the system in case we need support next year.
Today was also the last day of school for the year.
Zac had a lovely day, though his team lost the trivia competition due to too many questions about celebrities! On the drive home, we reflected on the year. He has had a great year at school and doesn’t regret changing schools at all. He is looking forward to Year 9 next year.
Another day, another couple of appointments! Thankfully this time it only involved one hospital.
The first appointment was this afternoon at the Royal Children’s Hospital for Zac to have a catch up with the ME/CFS specialist.
I don’t remember ever seeing the hospital quite so full! We had to park on the bottom level and finding a seat in the waiting area was hard. We were able to find a seat when another family were called up for their appointment. We were both glad of a seat as we were waiting over half an hour after our appointment time before being seen.
The doctor was pleased with Zac’s progress, including his exam results. She checked his blood pressure and it was similar to what it was last time, which was good. We were told to keep up with his hydration and diet, and generally keep doing what we’re doing. We have another appointment in March next year.
The second appointment for the day was with the GP for Nat.
Nat has an ingrown toenail. We were laughing that he finally had something that the GP could fix! He has a course of anti-biotics and instructions to soak his feet and to come back if it hasn’t cleared up in 5 days.
After talking with some of the other Ferocious Fighters parents, they have told me that ingrown toenails are not uncommon. We are hoping the anti-biotics will clear it up.
There are the first of the appointments for the week. We have at least one appointment every day except Friday! Crazy week.
Thankfully it’s the end of the school year tomorrow.