Craft Shows & POTS Program?

12742457_10154852110484815_6217521463518586951_nI’m starting (crossing fingers) in March, a POTS rehabilitation exercise program.  It’s by a place in the States, that did an rehabilitation study.  The study is done now, but your family doctor can email the people from the study their office information, and they will email your doctor (or specialist) this package full of files.  You can work at it on your own like I will be, or you can do it with the care of your doctor.

It starts for people truly deconditioned by the stupid illness, to start with a Premonth 1 and Premonth 2 exercise plan, then you start exercise months 1-4 and I believe with an added 2 months to help you stay on a life long plan.  I wanted to start this month, but I got a bad kidney infection and could barely move.  So here’s knocking on wood to start March 1st.  I will let you all know how I feel it goes for me.  I would love a heart rate monitor watch for when I go, but I can’t afford one right now.  Maybe next month when I get my GST cheque.

So anyone who reads my blog on a regular basis knows I like to do small craft things like knitting, gardening, etc.  I am starting loom knitting right now.  I got myself the Martha Stuart loom knitting kit which comes with a whack load of pegs and loom boards that, that alone would cost way more than the kit itself.  I am actually really enjoying it!

What I am thinking of doing, since scarves, etc. don’t sell well online on places like Kijiji, etc. (not for what they cost to make even usually)  so I would like to spend this Winter, into the Fall working on a bunch of knitting projects, and try to possibly sell them at a craft sale if I am well enough to do one.  I very well will not be well enough, but I want to get some pieces started.  Regardless I will sell them online.  I would like to get into more crafting ideas by then too and see what I can do to go with my stuff.  We shall see!

Valentine’s weekend was great.  My dad got home from his trip and had gotten me an amethyst necklace I wanted on his trip and brought me up roses 🙂  I completely forgot that he gets my sister and I them each year.  I had missed him so much!

Talk soon!

Ash,

 

Our Lives

25776-03_-_Amedeo_Modigliani_-_Ritratto_di_D_die.jpgSo many people say things like, “I wish I could stay home all day and watch Netflix.”  They get to go to their 9-5 jobs, and then come home and do WHATEVER they want.  A chronically ill person, is sick (aka their job) 24/7!  How would it feel to be at work 24 hours a day?  That’s what it’s like to be sick.  To work a 24 hour job while feeling like you have the flu.

I noticed sadly when reading the groups on Facebook, how many people there really is who has no one in their lives.  It disgusted me to see how many POTS patients, had families, who thought they were making it up and just being lazy.  Or the ever running depression or anxiety excuse.

We do get anxiety and depression though.  Our bodies are running 3 x’s faster than a healthy person, and our adrenalin levels are generally soaring, especially so when we are sick.  So our bodies are literally in fight or flight mode, even at our best.  Of course we are sad too.  We are sick!  There is something wrong with someone who is okay with being chronically ill.  Sick of being sick.

I am lucky to have my immediate family who believes my POTS is an actual debilitating health problem.  They couldn’t tell you what POTS stands for if their lives depended on it, and constantly ask me to do things that are crazy for a potsy to do, but that’s just lack of choosing to learn about it.  I realize it could be a lot worse.

I live on my own.  I have a PSW (personal support worker) who comes to my apartment once a week to help me with any house keeping or meal prep I need help with.  To her it is easy, but to me it’s the difference of getting to live in a health environment.  I would be lost without her help each week!

I also have a Peer Worker, who comes once a week and takes me out for any errands I need to run.  She helps me get my groceries, takes me to get blood work, pet food, etc.  Anything I need to get out and get done.  Since my POTS causes me to faint, and I will collapse very easily from weakness, my Peer Worker is essential in case I get to sick and need to go home.  Which happens a lot.

I’ve been getting a lot of comments and questions from friends and family members of someone with POTS, and kudos to you all!  The fact that you want to learn more about the illness and how it effects the person you care about, that you want to understand and help in any way you can.  Just knowing you are a support system who believes and truly cares about us is exactly what we need.  We don’t always need someone to come over and do stuff for us, but knowing that you happily would if we needed you, means so much more than you’ll ever realize.

Don’t give us doctor advice, or try to push us to do more.  Remember, when we are going for a walk, our bodies are reacting like we’re jogging beside you.  Life and functioning is exhausting, and we just want you to be there.

Take Care.

Ash,