Things heard

Things said to be: “I am sure you will make it back to school on time, you have a month to recover. Why wouldn’t you be on time? Makes no sense.”
“ a whole month? That seems a little excessive”
“Well, that is going to be difficult for us if you are not here the first day”
“ why do you think you need help? Can’t you get around by yourself?”
“I better go with you to your appointment because you tend to mishear things”
“ Oh, you can go back to the original surgey date? Shoot, your brother is coming with the kids”
“You will be driving in a week”

Sigh. I

Hey Abby,
Many of us have heard some very similar lines. Personally, I’d turn many of the statements around, putting it back on the them. For example

"My hope is that you are correct and I will be recovered by then BUT if I am not fully recovered and only inform you the week before it will leave you scrambling to find a teacher to cover my students. So, out of respect I’m giving you forewarning that I’m having major surgery. If everything goes to plan, I’ll be here on the Monday and if not, you are aware why. I do understand the difficulties involved for you, but please understand the difficulties I maybe trying to manage too.

“My hope is that I don’t need any assistance at all BUT if I do, I’d like to have such assistance in place prior so that I’m not trying to manage my symptoms/recovery AND trying to sort out supports during that recovery…” And I think it’s the same with driving. We all hope/wish/pray we will bounce back really well. I didn’t have a problem with the ‘driving’, but light flashing through the trees whilst driving down the road was a big issue. I’m out in the country and traffic here is minimal, but in town driving was totally different. You’ve got vehicular traffic, you’ve got pedestrian traffic and you need to be able to react in a milli-second if someone steps off the kerb and you need to be very attentive when in control of a vehicle. Initially, I found I could drive the 20minutes to the local shops but then find by the time I’d finished shopping my symptoms would often overwhelm me and I couldn’t drive home safely.

It’s not like I can say ‘At 2pm I will be symptomatic…’ or ‘If I do ‘x’ activity for only an hour I’ll be OK…’ I don’t know when it will strike, I don’t know at what intensity my symptoms will present. I can’t say what my ‘triggers’ are going to be today. I just know that at some point I’m going to need to manage it all and whilst you are learning what works (and what doesn’t) for yourself it can be beneficial to have a backup person. Like I’ve said to others '…You might bounce back relatively unaffected, but if that’s not the case having some sort of backup can be beneficial.

Personally, having another person with you for appointments isn’t a bad thing, in fact, I’d recommend it. At the neuro appointments I always take a ‘support person’. These appointments can be VERY overwhelming sometimes and although I am attentive to the dr, the things I may miss the ‘support person’ may remember or pick up on. It can be emotionally overwhelming, I had a real battle accepting I needed ‘brain surgery’. “That thing in there, that’s my brain. That’s what makes me ‘Me’ and you want to do WHAT???..” Some medicos make out it’s not a big thing, and for them, yea sure, they do this sort of thing every day, but for you and I, it just ain’t that simple. My thoughts were running at a million miles a second, the surgeon was talking but my mind was trying to process the shocking reality of it all. Having that support person, they picked up on pieces of information that my mind missed.

We, the patients, have very little to nil control over scheduling, that’s all up to the surgical team. The idea that we can simply ring and change the date, often that simply is not possible. At one of my pre-operative consults I was told “Call us on Tuesday and we’ll clarify the date/time then…” I called on the Tuesday to be told I’m supposed to be in the hospital NOW, for surgery TOMORROW :astonished: :worried:. and it could NOT be changed. I was at work when I called, so it was a mad rush to get everything setup and then get to the hospital.

Neurosurgery is unlike any other surgical procedure. Some people do not understand this, hell, I didn’t understand it myself prior. I’d had numerous surgeries before and thought this would be the same. It was not. I’ve tried to explain it all to others and they often get this ‘glazed over look’. I have found some are unable to comprehend it, but this is about you, not them and you NEED to look after you.

Merl from the Modsupport Team

I’ve been taking on so much at work and finally someone said to me, you need to set boundaries. You’re taking on too much and you’re not setting them for yourself and so other people are coming in and expecting more and more of you.
Also, I am trying to just block out individuals that are giving me stress as much as I can. I don’t want to hear about somebody else’s problems right now because I’m trying to deal with my own. And if people don’t understand that that is on them and not me it’s just frustrating. But you were right probably having another person come with me is a good idea. I could just train a cat to take care of me. …


Ahh, yes, setting boundaries… …when you learn ‘how to’ can you please tell me how :roll_eyes: :wink:
I was the ‘fixer’, if someone had a problem I’d try to fix it, come up with a plan to work around the issue and I was ‘On-call’. At night the work phone was re-directed to my phone, so if a client called at 2am I got the call. Often the client was another staff members client, but being ‘on-call’ I was dealing with it all. I became the ‘go-to’ person, the fixer, I was burning myself out. When I explained this to management the response was ‘Well, you have before, why can’t you now?’ it had become expected.

They knew how to ‘Push my buttons’, I’d do everything I could for clients and management knew it, milking it for all it was worth, but when I said ‘No’, ohh they didn’t like that. It wasn’t that I was saying ‘No’ to be objectionable. I was saying ‘No’ because I physically couldn’t. It used to be simply get up, coffee and go. But post surgery, I NEED my sleep, then I NEED my wake up time BEFORE my day starts. Those get up and go days are long gone.

We setup a programme, teaching people with disabilities how to catch public transport independently. Some would think this is easy, just catch the bus and go, but it’s no quite that simple. I had setup all of the processes from working the routes to working out timetables to safety precautions for that specific client and their needs etc. Sometimes this would be a combination of buses and trains to get the client to their specific destination. Then we’d have to do the route with the client.

If the client needed to be at work at 8am, we needed to be at their home at 7am ready to go. Because I’d set it all up often I was called on to do the Bus runs and I had no problem with that, so I took them all on. But when I said ‘No’ because for a 7am start I needed to be up at 5.30 to give myself time to adjust and then drive (???), it was such an imposition on them. Seems I wasn’t being a ‘Team Player’ anymore. They soon learnt that ‘Bus Orientation’ (as we called it) wasn’t as simple as they all thought, but I was the big ogre for saying ‘No’. Now, I can see that by being the ‘Go To’ person/worker I’d made a rod for my own back and that expectation had been set.

I’d be agreeing with that someone ‘…you need to set boundaries…’ for your own safety.
Burnout in the caring field is common. Why? because we tend to expend 90% of ourselves on our clients, leaving only 10% for ourselves and our own needs. Some can survive on a 90:10 ratio, but then when our own needs explode we ‘try’ to maintain that 90% for clients but need another 90% for ourselves. No wonder we burnout. I felt SO VERY selfish and the guilt… …oh it was nasty. But I’d proven to myself I could push my limits, but there was always a consequence for doing so, usually in agony. I had to weigh up the cost, for me. Not for my clients, not for my employer, but for me.

Merl from the Modsupport Team

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That’s probably why they want you back early! Setting boundaries is really difficult, I could do it easily enough with my client population but not for myself either, it took my rupture to even begin learning how. Oh and my neurosurgeon when she grounded me from my parents🤣. She actually suggested I learn to say no…I did learn to say “wait, wait, wait” and “I need help”.

I think a lot of members here know how much I enjoy learning from the greater good website…here’s an article that may get you started on setting boundaries.