Yesterday marked 7 months since surgery! I have no idea where the last 7 months have gone. Having said that I did spend one of them sleeping most of the time, but I'm not sure what filled the other 6 months up. On top of that yesterday was the last day of school for the term (unfortunately it didn't end as one would hope it to end as two 4yr olds were so engrossed in their play that I ended up having to change wet clothing and another teacher had to disinfect the slippery dip). I'm really happy I made it through this term. Retrospectively I shouldn't have gone back to my full workload at the beginning of the term because those first few weeks of work really knocked me around. It was definitely hard and I definitely had moments where I thought I would not make it but I did.
I had a meeting with my boss and my main consultant from my rehabilitation program on Tuesday to discuss next term. Our main focus was trying to explain the type of fatigue that I still feel and how I use almost every break to regain some energy so I can make it through the next lesson. I find brain fatigue a really hard thing to explain, and as my specialist points out, unless you experience it you can't understand it. Anyway, I've been let off of yard duties again this term but I have a sense there are a few people who aren't happy with this. If I muster up the courage my speechy and I will talk a bit about this fatigue during a staff meeting so hopefully these few people won't be grumpy about it, not that I actually care about how they feel about it, because frankly it's not up to them.
After Tuesday's meeting I felt a bit more relaxed about next term but then the thought of Wednesday afternoon was a bit daunting. I yet again had a meeting with my neurologist booked in. I was a bit annoyed that I had to see him because I'd seen my neurosurgeon only a few weeks previously and was given the 'all clear' for the time being so felt like I was just going to see him to have the same thing told to me again. Having to pay $1** to see my neurologist added to the frustration however when I left I no longer cared that I had paid over half a day's pay to see him for 20 minutes. The reason for this was because he told me that he didn't believe it was necessary to continue to make appointments with him as I've been seizure free for just over 4 years and my surgery went well. It was a shock to hear this. I still have to see my neurosurgeon for ? years as he will monitor any change in my tumours but the thought of not having to see my neurologist was hard to comprehend. I've seen this Dr. over the last 6 years plenty of times. He was the one who shocked me 6 years ago telling me I had tumors and epilepsy, then he helped get my seizures under control, he was then the one who suggested that I have a consultation with my neurosurgeon. All of these experiences stirred different feelings from anxiety to rage, not at him, yet I always felt comfortable with what he was saying and trusted him and his suggestions. The thought of not having to see him makes me feels like I have reached another milestone on this long journey. It's also quite a weird thing to accept because there's now room for more uncertainty in where things are headed. I'm going to take the standpoint that things are continually getting better. He made it clear that I am more than welcome to make appointments to see him if I want to and that in itself made me feel calmer about saying goodbye as the appointment ended.
Mind the gap!
ReplyDeleteGlad everything is going along so well Cass! Unfortunately the brain fatigue thing is real. But I'm sure it will get better with time. Hang in there!
Hi Cass, I am so glad (not in a happy way of course!) but in a relieved way that you mentioned brain fatigue as it's something I'm struggling with at the moment being back at work, even though I'm doing heavily reduced hours and workload- my manager made a comment about it essentially saying when she was gone to have a 'nap'- I was explaining this to my Mum earlier, I know these things are said with the best intentions but this kind of fatigue I find is not cured by a 'nap' its like wading through treacle with all my muscles (including my good old mind!) just wanting to shut down or not function! I have a long day Tuesday as it's scan day, psychology day and results day- I will update my blog once I know what's what...Positive vibes! Do you get an Easter break now? I hope you enjoy yourself and get some well deserved down time and most importantly fun time :) How's the weather where you are? We had a lovely day here today with gorgeous sunshine so that makes it easier to want to get out and about. Xx
ReplyDeleteHey Gem, how did your scan go? I hope the day wasn't too overwhelming. I was thinking about you.
DeleteI found it really helpful having my specialist come in to talk about my fatigue with my boss because they were able to explain it from a professional point of view and she had some resources for my boss to read that verified it is actually not just me needing a nap but that it is fatigue that needs to be worked through. We talked about the strategies that we have formed together to make it through the day at work and at home when I'm feeling really fatigued. Perhaps you could have one of your specialist support you in that way? I'm glad I did.
I am on holidays now. I just finished a 10 week term, so the teachers have 2 weeks off. The weather here at the moment is absolutely beautiful, it certainly encourages me to go out/get out of bed. I went to see John Mayer last night. He was amazing, I'm still on a high from it so even if I wasn't to do anything else these holidays I would have had my fair share of fun. I'm going to a wedding on Saturday so that will be fun as well.
I hope you are okay and that your Easter is lovely. I really hope you are doing well. Thanks for keeping in touch. Cass x