Discovering new life skills

I will let you know. It is a path of discovery for me. I had to change my monthly calendar on the fridge to a weekly calendar. It is big and I can color code everything. I know if I am tired, I get really dizzy. I also know that when I get stressed my neck and spine hurt. If the stress is too much, I can’t function…I have to sleep. I also know that if I remove myself from a stressful situation that my body becomes so achy and sore that I have a hard time moving. Learning about myself and how I function in the new brain.

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Healing can be like a roller coaster ride, especially in the beginning years, but with a lot of patience for yourself, it’s doable. Just remember that our brains can eventually develop new pathways for the ones lost when we rupture. When my first year after rupture came to an end, my Neurosurgeon believed it was as good as it was going to get. I told her she was incorrect😂. I had just had some training a short time prior to my rupture on head injuries. There’s a wonderful researcher down in TX that has proven all those old theories wrong. His research gave me viable hope, my life experiences and career gave me the tools I needed to understand what to do, my Speech Therapist taught me to put everything in the calendar on my phone with reminders (I use two alerts when I have to go somewhere). I look at my calendar for the day first thing every morning so I know where I need to be that day. You should have seen our home prior to that -sticky notes and whiteboards everywhere🤪

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You are so right about healing being a roller coaster. One day I am fine and feel like I can do anything and the next day I feel so overwhelmed that I am in pain and I have to just sleep. Today I made progress where I went to my workplace and I stayed for an hour talking with my co-workers. Afterward I went to do tests at the hospital and came home. I did not suffer the achiness all over as I did before. I am looking at the different strategies and delving into them so I can make them suit me. If I continue on my path of experimentation and applying strategies that work for me, maybe I can return back to work very gradually like an hour at a time. I am the eternal optimist!! Lol

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My cup is always half full too! Good for you! Whoever the woman is at the hospital that tells the employer when the patient can return to work had me returning whilst I was still in NSICU. The first time I returned to my office after rupture was on a weekend and BH helped me remove all my personal items. We also returned everything the County owned from my office at home. I got a call Monday morning and was told that I wasn’t allowed to come into the building unescorted. I asked why as I hadn’t been fired. I was oh, so confused. I received the letter of termination a few days later.:joy:. I sometimes miss working, except on holidays that is LOL.

I’ve got personal things I celebrate accomplishments with now. I am able to play Sudoku just this year again. Haven’t been able to play it since I ruptured. And I was able to drive in medium rain just last week! Everyone breathed a sigh of relief that I made it home, I fell asleep as soon as I sat on the couch, I was exhausted. These are biggies to me now, but they sure make me feel good. Today, I get to write a couple of checks! There was a time I couldn’t remember how to sign my name and had to look away to sign it. Three cheers for muscle memory😂

I really think you’re on the right track in recovery. I hope work goes well for you!

I am celebrating today because yesterday I did dishes, laundry, vacuumed, and wash my floors! I was so excited! When my boyfriend came home, he asked me how I felt. I told him a little tired but not bad. I feel that if I can continue this routine and slowly add in time at the school I work in, it might work! I could start spending an hour then add more. I think this is my goal. It should be interesting. I just drive around our little town. I don’t have the confidence to drive to the next town. Soon though. I find driving takes so much focus that I am so tired afterward. I found out what makes me dizzy… if I have a bad sleep or have little sleep, I get super dizzy. Thank you for being such an awesome support person. I feel that reading experiences others have had or are having helps me plan my goals to work again in the school.

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@Suszanne
This was great to hear! Congratulations!
I have been told that if we take small breaks during the day between activities, sit down, relax, drink something or having a snack, then we can go on with other tasks and we don’t make a crash landing at the end of the day. Take your time, it will be better, if you need to rest, do it.

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Fantastic news! @oct20 has really sound advice with rest, snacks etc. If you’re like me, I need the protein, not the carbs for my brain to recover and I always have water (hot tea in the mornings). I’ve been taste testing different protein drinks of late and I think I’ve found one I like better than the others. I have learned that I prefer the ones in plastic rather than waxed cardboard as they seem to shake up better for me​:crazy_face::joy:

I am new to the recovery process and learning the new me… I have also found that my neck and the back of my head can really start to hurt when I am stressed. I am still having a hard time handling stressful decisions and situations where before I would have easily been able to function fully. The sleep demands, as you highlight, are much larger than they used to be. I am in the military, normally 4-5 hours was sufficient for a good day… now its 9-10 hours. I also find when I am overwhelmed that I need to just lay down… let myself reset. My husband has been the best cheerleader and tells me that this new me is just a new set of rules but I can still be the same me… In time, I know I will realize he is right, but for now I am still fighting the frustration of being “limited.”

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None of us who’ve ruptured like to have those blasted limitations. Your husband is absolutely correct, the limitations will ease up as long as you don’t give up on yourself. I think your on a great road in recovery!

I’m sorry but I don’t recall when you ruptured but that first year was difficult for me as I clearly recall. And probably having procedure #2 six months after my rupture, didn’t help matters. Staying well hydrated and focusing on the amount of protein I was told to take daily was a huge help in my recovery. Back then it was 90 gms and there weren’t many choices for extra protein. Now I try for 120 gms and find it works well for me, ask one of your doctors. I also had to drink three bottles of Gatorade, 32 oz size and double that amount with water per my Neurosurgeon.

Well, I am finally getting some family support. So this will help me with working and learning new strategies. I went to the counselor on Tuesday and felt like a bumbling fool because I thought I was saying something I wanted to convey, but the words just spew out in an incomprehensible mess. At that moment I realized that there was no way that I would be working in a classroom setting with grade 9’s. I need more communication time with people…especially face to face. the speech throws me when that happens.I just have to practice more.

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I’m happy to read you’re getting family support! I think it’s tough for friends and family alike in the beginning to comprehend what is going on. We look like we always have so it’s a bit more difficult to accept we are different. Merl from @ModSupport always says it’s not like a broken leg where people see a cast and once it’s off back to normal.

Practice makes perfect! Can you join any kind of group? Maybe a Stroke support group in your area or a special interest group focused on a hobby you enjoy?

One of the things the second Speech Therapist taught me to do is keep time with my hand. So like a music conducted or tapping on my leg I could keep my words more fluent and recognizable. I still do that on occasion, especially when I’m stressed. I didn’t know it until our wonderful handyman asked about it the other week. He’s a pretty bright cookie, he earned his PhD in Theology of all things. He observed that when I used the conductor moves, my words came easier. Now when I get stressed with the other trades, he or his wife gives me the visual clue!

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Hey Suszanne,

I think that sometimes with family they start out with that “Broken Bone” theory, then when that theory doesn’t work, they expect a ‘next move’. For some of us making that ‘next move’ can take a while. It took me months to make ANY move. I was seeing the surgeon, but his view was ‘all fixed’. If as he said it was ‘All fixed’ then he didn’t have to do anything. It was no longer his problem, it was mine. This was when I started making my own plans, seeing my own ‘alternative options’. I saw physios, ophthalmologists, acupuncturists, Bowen therapists, psych therapists etc etc I exhausted every option that was open to me and documented it all. Then when a Dr says ‘Have you tried ‘X’?’ I was able to say ‘Yes, and here’s the report…’ Another BIG plus in doing this is that others around us can see that we are actually being very proactive in our own care.

I think the fact that you have identified within yourself that returning to the classroom might be a step too far, at this point, is a good thing. I say this because I didn’t identify my limits, I tried to push on past them and that was a BAD idea as my symptoms didn’t just add up, they multiplied each other. The more I pushed, the more my body pushed back. ‘Idiot’ (Me) kept pushing, convincing myself I was building stamina, until one day something went ‘POP’ and I woke up back in hospital needing further neurosurgery… Ahhh, don’t do that. Other’s may have expectations, but honestly, only you know when you have reached your limits. Your body will tell you it’s reached it limits, but only if you listen. Others may have an opinion, but you are the one living it, not them.

Merl from the Modsupport Team

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I definitely listen to my body. With the dizziness, if it is severe, I go back to bed and sleep. If I am tired at any time, I will just lay down. My boyfriend tells me things can wait because my health is more important than the chores around the house. It doesn’t mean I won’t push myself, but it does mean I know when to stop. I have aways had patience with the students I work with but never myself. I am on a steep learning curve for this one!! I realize it may take a lot of time to heal so I try not to be so hard on myself but it’s hard…lol

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I think all of us who’ve been in a helping field struggle with this one! The way I had to confront the issue was to treat myself as a client. Now you get to treat yourself as a student! You’re leaps ahead of me, good job!

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BIG +1 to you both here

AND

When it came to clients, I could have the patience of a saint. When it came to self “Ohh hell NO” and I’d metaphorically beat myself up for not reaching my goals and still, almost 10yrs on I’m still not completely at peace with self. I often look back at how far I’ve progressed, but still kick myself for not being further along. It’s silly really because I could still be stuck back there, but it is frustrating I’m not back to ‘normal’.

Merl from the Modsupport Team

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I think for me, getting the headaches under control was a big help, the stent probably more so. BH is still trying to get me to look at what I’ve accomplished and not what I haven’t. I’m a slow learner​:crazy_face::rofl:

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I do the same thing…I beat myself up, but it is not as bad as it was before. I am accepting not a defeat but a different way of life where discovery is important. But discovery into all the resources, supports and new skills. Patience is starting to come…except with that darn black brain. Maybe people have it but don’t realize it. Just a thought. They might think it’s just a temporary void in the brain. I know…off topic. I flitter like a bird!! Lol

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:rofl: me too.

I too was told my symptoms may just be temporary, but it’s almost 10yrs and things haven’t improved much, so I’ve gone from temporary to long term. They say it ‘may’ still improve, but I doubt it. It seems I can have days of such clarity, there is no issue, but then have days like I’m walking through treacle. My BAD days never seem to appear when I have a neuro appointment. They see me on a good day, I look OK and they minimise my concerns. It can be very frustrating.

I once saw a cardiologist. He gave me this heart monitor I had to wear for 3 days, then return it. On the day I took it back the cardiologist plugged the device in and he tells me “There’s no abnormalities recorded”. I said to him “That’s odd, because I’m having symptoms right NOW”. He jumped up stuck all of these pads all over my chest for an ECG and sure enough there it was. My ticker was playing some sort of drum solo, all to it’s own beat. He then gave me medication which has lessened it, but if I miss a dose…it’s off again. Had I not been symptomatic on that day, at that time, I fear it too would have all been minimised again.

Merl from the Modsupport Team

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I understand what you are talking about. I can actually do pretty good for a week and then a couple of days throw me off and I have to start up gradually again. It is almost like the body says that’s enough…now you need to take a break but it’s like a three- or four-day break. It is funny how our bodies work and react to what we are going through.

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I hear you loud and clear about the good days and the bad days… Also reading along the conversations I reflect on my days that I feel like there is nothing going on upstairs and get myself into trouble doing too much. I keep trying to tell myself that it takes time… I miss being the busy adult that I used to be…

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