Month: September 2017
Today, Nat did something a bit different. He joined in with LAN-Slide to play in a tournament of League of Legend, a computer game he started playing last year.
After the results of having his feet down yesterday, and from last weekend, I was a bit nervous about taking him today. The event was in Aspendale Gardens, at least a half hour drive from our house. Nat insisted he was alright to go, so we headed off.
We found our way and, to our annoyance, the disabled parking spots were taken up by people who didn’t have permits! This meant we had to find another park with space beside the car for the wheelchair. Thankfully we found one not too far from the venue.
Walking into the room was like stepping back in time. For a number of years, the boys dad would play LAN games. His mates would come to our house, or they would meet in someone elses house, set up a LAN and play for hours. On occasion they would take over a hall at church and it looked a lot like the hall we walked into, just on a smaller scale. He even had plans to run a business like LAN-Slide!
It was interesting getting Nat to his seat as there were covers over cables everywhere. They were a lot like speed humps and not the most comfortable for Nat in the wheelchair!
When he was settled, I left him to it and went off to find some lunch and then settled in with my book. It was nice to sit and read for a while and not have to worry about anything else… that’s not quite true. Always in the back of my mind is the colour of Nat’s feet and wondering how he’s coping. Pretty sure it’s a Mum thing!
After his second game, I stepped up and said it was time to go home. He wasn’t impressed at all! By that stage, he’d had his feet down for three hours, plus driving time. We had to drive home, and I was tired. The biggest factor was the pain flare he’d had yesterday. His health had to come first.
We had a lovely chat on the way home about his game, and I got more information out of him than I had in the whole time he’d been playing! In his second game, his character was a cow named Alistair!
Even though I was in the bad books, I think he was glad to get home and put his feet up for a while. His cousins came over for dinner, and his feet looked like this this evening:
I am hoping that he will have a better sleep tonight than he did last night. He laughed at me when I took the above photo, referring to the many colours of Nat’s feet!
It was good for him to get out and hang out with his friends – they are planning to come over on Tuesday to hang out and play computer games too.
Yesterday, Zac had a lovely day at the Royal Melbourne Show with his grandparents. The last time he went was about five years ago, before he got ME/CFS. Even last year, this wouldn’t have been something we would have considered!
He cuddled a chicken, milked a cow, drove a dodgem car with Opa, and spent his own money on show bags. He had a lovely day. There were a couple of moments when he didn’t feel all that well, but his grandparents reminded him about his snacks and drinks, and that helped him to last the day.
The flip side to going out and having a lovely day is that his energy levels have been very low today.
We went to my nephews first birthday party in a local park. Almost immediately, he started to struggle. It was a pleasant day, however there was a cool breeze. When Zac has a crash, his temperature regulation goes haywire and he was sitting there shivering. We wrapped him in the picnic blankets and put him in the sun, but he still wasn’t coping too well.
At the same time, Nat was struggling. He was sitting with his feet down, but it was the wind that was making things hard. He didn’t want to eat anything, which is one of the early signs that he’s not coping. My mum tried wrapping blankets around as a wind break, but that didn’t work too well.
Nat only lasted an hour before we really had to go home – and before birthday cake!
By the time we got home, his feet looked like this:
The orange spots are a sure sign that the pain has increased. When this happens, we need to wait it out. He has been doing some ankle pumps to keep his feet moving, and did use the walking frame to get to the toilet, but that was really, really hard for him.
Zac has sparked up after having a rest, but he’s still pretty tired. We’re all a bit disappointed that we missed out on all the fun at the park.
Happy 1st birthday to Lewis for last Monday, Aunty Jenny for today, and me for next Tuesday.
I’m not talking about the kids – I’m the one who has started having afternoon naps again!
Juggling work, medical appointments, exercises and project work for Nat, home life, and everything else that I’m doing takes a lot of energy. It’s exhausting. Most days, I just put one foot in front of the other and do just what needs to be done before going to bed the minute both boys are in bed.
The last couple of weeks, including today, I’ve been having an afternoon nap on the days I’m not working. Those days tend to have appointments for Nat, or are on the weekends. Last Sunday, I fell asleep for a couple of hours in the afternoon!
Even on the days I have an afternoon nap, I’m still falling into bed as soon as the boys are both in bed, however I’m starting to have more of a clear head and slowly getting some energy back.
Afternoon naps are something that I have in my toolbox to help me get through life with everything we are dealing with. The first day I felt I needed one, I felt a bit guilty that I wasn’t getting through my To Do List… but no longer. It’s something that I need!
For most of us in Victoria, today is the first day of school holidays. I’ve seen so many posts and photos from friends sharing the fun they’ve had today and plans they have for the rest of the holidays.
In our house, today was a lot like any other day, except I didn’t have to do a school run.
Nat still has to do his exercises. We still have appointments for him. I still have work. The main difference is that Zac is home and he can help Nat around the house if needed so I don’t need to race home during the day.
My dad also stayed home today to help Nat with exercises and his project work following his pain flare over the weekend. Tomorrow there are appointments, so I’m not going in to work.
It’s hard not to feel a bit jealous about families who can go to the Melbourne Show or Queensland holidays, or any number of other activities that are just too hard for us right now. I’m starting to think that we will need to plan for a good holiday when this latest flare settles down… whether or not it’s during term time! The last big holiday we had was nearly 4 years ago to the day when we went to Queensland… might be overdue to have another one!
I hope we will be able to have some fun this holidays, Nat’s planning to have some friends over next week and Zac is hoping to do something with a friend. And next Tuesday I turn 40… so we will have to do something then too.
If you’re reading this and are on school holidays, I hope you’re having a wonderful time.
Today was day 2 of the Australian Nationals Speedcubing competition. Unfortunately, Nat was in so much pain we didn’t make it today!
Last night, I contacted the organisers to see if we arrived late if Nat could still do his solves for the Square-1 final. We were advised that so long as he could get the solves done by 6pm tonight they would count. So this morning we were going slowly.
Nat got hardly any sleep last night due to pain. Unfortunately, his pain hadn’t gone down at all.
All his specialists have told that if he has a pain flare up, he needs to push through and keep going. So I pushed.
I did a bit of tough love and told Nat that we were going. He reluctantly got up and got in the car. We were getting close to Eastlink when he burst into tears. This stabbed me right in the heart – I hadn’t realised quite how much pain he was in!
I got off the next exit and we went home.
On the way, we talked about what was happening.
We have realised that he needs a better way to communicate with me when he’s so sore that he really can’t do anything…
The other thing we have learned is that we are still learning. We are still trying to work out what works and what doesn’t. We are still learning how to help Nat get through a day like he had yesterday. We are still working out how Nat can tell us he’s in extreme pain and can’t really do anything.
It’s still hard knowing that Nat missed out on the finals of some of his events, looking at the finishing times, he was in with a chance of a podium finish! But his health has to come first.
He has spent the day on the couch going through the list of instructions his physio gave him for what to do when he has a pain flare. I ended up having a 2 hour nap this afternoon!