Tag Archives: outdoors

Prepare prepare prepare

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The thing to do when you have chronic illness is pace yourself. There is something to do before that though. First you need to prepare. If you know in advance that is, if not its all about recovery.

We have a huge big group hike that we have been planning happening tomorrow. Well if it is Thursday it is happening today but, I am writing this Wednesday.So we kept activities very minimum and flexible as well. I even came home and took a nap. I really did not have much of a choice actually. I came home from a rather short activity for me and laid down. Tried to get into the computer with my tv on like I normally do. I knew  shortly after that I needed sleep. It was a good way to start preparing for tomorrow.

Tonight I will take an epsom bath and when I wake in the middle of the night, as I inevitably will, I will re-medicate without hesitation. I normally wait. I don’t like to take anything if I can get back on my own. Tonight however, sleep will be imperative. I will also stagger my melatonin and other night meds, for whatever reason they work better if I take them about an hour apart. The only thing I can think of is it is like stepping your body down from the day. I will probably take the magnesium first with half dose of melatonin. My heart meds the next hour and then the last one will be benedryl so I can breathe.  (I know there are other things to take, Benedryl was what my ENT and I settled on).

In the morning it will still be about preparing. Coffee of course will happen. A good breakfast will be vital today especially. A good bowl of quality oatmeal, some chopped almonds tossed in.  About an hour after breakfast I will drink some green juice mixed with some soy protein.  Lunch will be light. Probably Cheese and crackers and apple. A pocket full of almonds and cashews, a bottle of water and we will be off. It sounds like a lot. Especially when you think that is just to get me ready and not the kid. At eight though she pretty much takes care of herself. We go on hikes enough she knows to drink lots of water and she will probably have the same lunch as me.

The last thing I will do is take my multivitamin right before we go. Its kinda like a little pep before we go.Just one more way to give my body a little oomph.

This is what works for me. It has taken me literally years to know how to prepare and not just recover. There was a lot of trial and error. There was a lot of thinking or over thinking or under thinking going on. There were even a few I found by accident, like stacking my medications. Only stack your medications like that if they are not scripts. If they are scripts talk to your Doctor first. I can not stress enough the importance of water. When you think you are hydrated, drink some more. I would encourage only water but whatever it takes for you to be hydrated. Often we get the Mio electrolyte additive drops for flavor and a maintaining hydration. The key to finding what works for you is to journal it. Jot down notes when you can about what you did , how it worked. I kept mine in just a microsoft word file for the longest time. There are also a lot of good pain journal apps that will help as well. I still use one off and on.

The last bit of advice is remember to this will NOT stop you from hurting after a big activity. It is to reduce the impact. It is still important to pace and to recover. Do not consider this pampering yourself. This is self care and it is vital.

Also…if you have followed me for even a little bit….you know there is a hike post coming as well!

The changed meaning of Summer Break.

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Remember when we counted down the days left of school? Summer vacation was coming! No school! YES!! YES!!! YES!!!

There was a certain glee on walking out of class that last day of school. Time to party! Time to RELAX! Time to have FUN!

Tear up the papers! Throw out the books! Drag the backpack behind you!

Hello sunscreen! Hello beach towels! Hello sun hats! Don’t forget the aloe!

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As a Floridian…it was all about how long we could stay at the beach and then when high summer hit it was how long could we stay in the mall.  It could never last long enough. It was always too soon to go back to school.

Now its more like the count down to when my daughter goes back to school starts. 86 days but who’s counting? ME! ME! ME!

Its not that I don’t enjoy spending time with her. I adore it. However I know I can only do so much a day and she is like the energizer bunny. She keeps going and going and going and going.  Plus she wakes up at the most ungodly of time called five forty five. She is normally in bed by eight pm but do you know how many things a child can go through in that amount of time? How quickly they recover and are ready for more? If I could bottle it……millions I tell ya millions!

In all seriousness I have it pretty much covered til July. She is going to the mountains with a friend this first week. Then we have two weeks for her to recover. Then three day Disney vacation. Then there is three weeks of time where we have nothing planned. Sigh. I am going to need at least a week to recover from Disney. She will probably need a day. If that!

Then there is the flurry of planning the ladybug birthday party….

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Then I am pretty sure the plethora of ladybugs that will be residual of our ladybug birthday extravaganza that she will be entertained outside.

Right now I am thinking the idea of buying 4500 ladybugs for fifteen bucks for her party is pretty genius…..I will let you know about that later. It may not be as genius as I think it will be. Bug boxes, tweezers, magnifying glasses, bug nets…..a handful of eight year olds…What could possibly go wrong with that? DON”T ANSWER THAT!

The approaching days of summer brings alot of worries for me. I want her to enjoy her summer vacation but also retain what she has learned this year. We do have some library classes planned. Its not the reading I am concerned about. We are avid readers. We constantly use our imagination. The truth? Its the math. Simple addition, subtraction ,fractions, multiplication.  I am pretty sure just saying those words makes my brain explode.

My medications are sometimes miraculous to help me get through the day. However there are plenty of times when they are not so much. In fact there are some days I am convinced someone switched them with sugar pills. Wait….no  I might get a tad bit of energy or pain relief from the sugar….so….nothingness pills.  Pills that delude you into thinking they are going to give you even a little bit of relief.

I am not worried about taking her places or spending money. I am worried about just keeping up with her energy.  There may have to be some movie marathons snuggles in a cocoon of blankets.I could watch her sleep or her fascination with a movie or listen to her little giggle for hours on end.

My view point on summer vacation has changed drastically of how it was twenty years ago.

I wouldn’t have it any other way.

So when the pain is high I will do my best to push it aside and put myself down to an eight year olds level. To see the world in wonder again. To just enjoy the moment. When the pain keeps tapping my shoulder to get my attention we will drowned it out in blanket pillow piles for movie marathons.

I prefer these kinds of summers to the ones twenty years ago.