September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

October 28th 2015 Regrouping, getting myself back on track...

NOTE: Please copy and paste into Google Translate to listen if needed.

Apparently, I've been doing too many new things - both small and not so small (at least for me), so I've had a setback.  I decided to share this because I've said that I'm sharing my story, and since having a setback can happen during rehab, I thought "well, this is part of my story."

It's very frustrating.  Doing new things, challenging myself is supposed to be a good thing.  I noticed that my post about pacing hit home with a lot of people, and I thought to myself "well, I guess I have to re-think my own pacing now."  So I'm dialing it back, and getting back to my baseline.  Then with the help of Joyce (FT), Ann and Dr. Margolis (VT) I'll figure out how to keep moving forward. 

Some people feel the effect of doing something right away, and for some people, for some things there's a delayed reaction.  I think for me it depends on what I'm doing, how aware I am of how I'm feeling, and if I try to push through or not.  As I've said before, pushing through is something you are - I am - supposed to do.  It's tricky sometimes to know when it's a bad idea.

As part of dialing it back, I'm taking extra care to take care of myself.  Getting enough rest and staying well hydrated are both really important.  Paying attention to my breathing, and doing my breathing exercise is also important.  I'm focusing on playing my flute, but not reading music.  I'm grateful I can still play a bit.  I'll just play for pure enjoyment without all the work.  Playing music from the written page is only enjoyable if the cost is low. 

I'll be more selective about what I do on the computer, for example how I use Facebook, since computer usage is very demanding.  I'll figure out some less demanding projects for myself.  Indoor gardening - think houseplants - is one that comes to mind.  As always, I have to figure things out as I go, because I don't have a blueprint.  However, I trust and am grateful that I have Ann, Joyce and Dr. Margolis to help me.


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8 Responses to October 28th 2015 Regrouping, getting myself back on track...

  1. Sorry to hear about the setback. Cheering you on from over here.

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  2. I had a setback, pushing through with a physical effort, the result was no sleep, and a serious setback the next day.It cost me a couple of days to regroup as you say. I talked to my counselor about this and here is what she said. When you start something big , no matter what it is, start out with 15 minutes, then stop, have a glass of water or something , relax, look out of the window, then if you feel ready to go back , go, and only go to just before you feel that it is enough.But you said that too, I believe. Maybe this will help a little, because even if this will take longer to achieve your goal , it will bring you closer.
    Good luck, and thanks for writing this, it sure helps not feeling alone.My name is Renee Van Uytven , I am on facebook

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    1. Thank you Renee, for sharing... what you are talking about sounds basically like the pacing I was referring to... I guess figuring out when to stop and start can be tricky when you don't know for sure how you'll react to something, or what you'll encounter... I definitely agree that small bites, when possible, of new is a good idea... thank you for reading!

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  3. thank you for this post... I had been in remission from febuary and LOVING LIFE again after being sick for the last 4 years....I had finally gotten to the point where I was not waiting for the symptoms to come back and bite me on the bottom!... unfortunaltley this month though I have had a HUGE setback, and due to a different illness I've been quite ill, in hospital 3 times over the month and basically moved back to my parents just to cope.... of course this is when my Vestibular symptoms decide to come crashing back ontop of everything else I'm currently dealing with. It makes the whole medical picture so cofnusing for the drs, whom were already trying to work out what was what... but now have to deal with vertigo, nausea and everythign else that goes along with it.... the sadest bit is the loss of that freedom and independence I had gained... and I find it hard to accept the "doing nothing" part of recovery.... so I need to remind myself that taking it easy is EXACTLY what I need to be doing at this time.. :) this is only a setback. :)

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    1. I'm sorry to hear about your troubles! take care of yourself ..... and yes, try to stay positive :-)

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  4. Thank you for putting into words what I experience daily! I can't tell you how grateful I am for finding Veda and the blogs. I too am learning to pace myself. So hard to do ..........but so necessary. And each day I have to determine what my limits are for that day and then adjust my activities to fit my needs. Some days I can do more, some days I have to do less. It is confusing when you read from"the experts" to do more and challenge yourself more, that this will awakening your brain and retrain your nerve endings to connect and remap. I always ask myself....I wonder if they have ever had imbalance or felt like they are on a ship at high seas or someone is pushing or pulling you as you walk or that have they found themselves bouncing off door jams or walls or nauseated just reading a recipe? Tell me you have lived through this for 2 years and found pushing yourself to exhaustion and sickness made you better? Over the past several years I have done it all! Everyone is different and I think every case different and everyone has to find their own way to better health. The key is don't give up! Listen to your body! Read reports and blogs like on the VEDA website and others. Find doctors who will listen and learn with you. Educate others about your condition and needs. Love yourself ! And a setback is just that.. a setback and temporary.....you will move forward again!

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    1. Thank you for sharing... so true that it's very individual! Sounds like you have a good attitude.... I think the brain does re-learn - the key is the balance of it all - pun intended :-)

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