Showing posts with label Small Victories. Show all posts
Showing posts with label Small Victories. Show all posts

Saturday, November 2, 2013

Just Another Day in Paradise


I’ve mentioned before that I was on a hiatus of sorts from my illness. I found myself spending an inordinate amount of time dwelling on my vital signs, symptoms, research, trying to find new doctors and on and on and on. For me it was quite literally sucking the life right out of me. During this time, when I was realizing that certainly there has to be something out there that is positive; I ran across a Facebook group called POTSY Paradise. It began as a group for those with Dysautonomia, but has since blossomed into a group for those with chronic illness.


“POTSY Paradise is a place where those with a form of Dysautonomia, and related conditions, can come together to talk about their interests, dreams, hopes, lives. While we have Dysautonomia, or take care of someone who does, we rarely talk about it here. In Paradise, we are more than our illness. We are a group of people, who share a unique bond--one founded  in illness, but kept together through friendships that form by sharing more about ourselves. All that is said in POTSY Paradise, respectfully stays in POTSY Paradise. This is our GETAWAY from our illness, a place we can talk and be us, not our illness. Welcome, my friends, to POTSY Paradise.”

POTSY Paradise is now one of my “go-to” sites. There, I’m able to share in life outside my illness. I’m able to share about small victories, my pets, my family, my newly found artistic side. Through this site, not only do I feel free to share about my life, but am truly blessed to share in others’ lives as well. POTSY Paradise is truly an uplifting, encouraging blessing that I am so thankful to have happened upon. Truth be told, I really don’t believe that I just “happened” upon it. I believe I was lead to it, and for that I am surely thankful.

Recently an article was published in “The Lima News” (Ohio) about the site and its administrator’s story (Linda Burgess Parsons). It’s a great article and I’m so glad to see that word about this disorder is getting out there.

 

So…a huge thank you and the richest of blessings to POTSY Paradise for a lovely respite from this disorder.

Friday, August 2, 2013

Still on Hiatus…Kind of


I know I wrote that I was on a hiatus of sorts, and I still am, but wanted to share some news with you all. Over the last week or so (and I kind of mentioned this in my last post) I’ve really been thinking of taking a break from this whole illness thing. I know that I cannot control my physical limitations, but I can certainly control how I react and respond to them.

Sooo, I’ve been thinking on this a great deal as of late. I am so much more than my illness. I’ve decided that I’m going to live my life, and I’m not going to let my illness get in the way. Some people might call this denial, and that’s ok by me; if it means that I can attempt going on with my life and putting my illness on the back burner to accomplish this, then so be it. I’ve mentioned before that there is only so much reading, research, illness related social networking, worrying, etc. that I can do. I’m tired of my illness being in the forefront of my mind from the moment I wake up. Used to be, I’d get up every morning and take my vitals, freak out a bit if they weren’t in the “normal” range, get myself all worked up, go on illness related sites and whatnot, get all worked up again, and on, and on, and on.

I found myself beginning to spiral out of control, not only physically, but mentally, emotionally and spiritually as well. I need a break from all of that. I need time to appreciate and be grateful for the things I do have and can do.

This past week has been liberating to say the least. I’ve been out more this week than I have in the past several months. One day this week, I wanted to take Beauty Queen out to do some errands and shopping. As you all know, I’m not the type that goes out often, especially without Big Handsome. Over the years, I’ve become a sort of agoraphobic, where I wouldn’t go anywhere without Big Handsome. As I began to get somewhat comfortable with my limitations I began to go out a bit more, but only if Beauty Queen was with me (so she could drive if need be) and/or my Sonshine (teen son). I still don’t go out alone, hopefully that will change at some point.

Back to this last week. I took Beauty Queen out and we went to several locations. We were able to accomplish all we set out to do and we had fun together. In the past, this never would’ve occurred. Then, the next day I had my hair appointment. Beauty Queen drove me and all turned out well. Today, I took the kids to get some breakfast and then to purchase some gourmet cupcakes for her birthday coming up. Usually, I wouldn’t even attempt to go outside my usual ten mile radius, but today, I actually drove all over, waaayyyy past my comfort zone, and I did it all without freaking out.

Sooo, I’m feeling quite free. Call it denial, or just taking back my life. Whatevs…all I know is that I haven’t felt this great in a long, long while.

I’m still on hiatus while I try to perfect this new life of mine. I do realize that this euphoria can’t last forever, or there won’t be some “sick” days, but my hope is that they are few and far between. Call it an experiment of sorts. I’m even taking a break from recording every detail of my illness on a daily basis (that’s one more thing I can check off the to-do list) I’ll be back shortly to share my progress.

I might be helpless at times, but I shall never be hopeless J

Tuesday, July 16, 2013

Top Ten Tuesdays


The saying “You don’t miss something until it’s gone” is such an integral part of my life now. There are so many things that people take for granted; so many things that I took for granted prior to becoming ill. I’d get aggravated by the weather if I happened to want to take the kids to the beach and it was raining.  I’d be peeved when someone would leave crumbs on the kitchen counter. I could get irritated when I wanted to wear a favorite shirt only to find that it was in the laundry and I’d have to find something else to wear. Now, these things that seemed like annoying issues at the time; I wish I had now. Thinking on all these things brings me to simple things that people take for granted. So here’s my Top Ten Tuesday list for today in no particular order:

Top Ten Things That I/Some People Take For Granted:

1. Waking to a new day each and every morning. As a chronically ill person, sometimes the thought of going to sleep is frightening as there are times when I think I might not wake up. Thus, the reason I now wear clothing to bed; I would hate for the EMT’s to see me naked, not to mention my poor children having to dress me prior to said EMT’s entering the house to take my body out. And, yes, I worry about my kids as well. So I’m thankful each and every morning that I wake up…and I’m fully clothed.

2. Awesome Husbands/Spouses.  There are people I know that complain endlessly about their spouses (and some with good reason), but I’ve also known people to have veritable saints for husbands and still find fault. I wouldn’t know where I’d be without my Big Handsome, and I make sure he knows that daily.

3. Going to the grocery store. Millions and millions of people complete this task on a daily basis and multiple times at that. I used to just get in my car and go, here, there, and everywhere. Now, I have a hard time getting to the grocery store, in fact, Big Handsome does the shopping now; how sad is that. I would hazard to guess that it is even more sad that a trip to the grocery store would be a feat in and of itself for me (might even be cause for a party provided I wasn’t too worn out from the shopping trip), yet most people accomplish this chore daily and don’t even think about it.

4. The backspace key. How many people even give this wonderful button a second thought? I know I do, quite frequently at that. If someone were to examine my keystrokes, they would see really quickly that the backspace key is my most frequently used key. With constant brain fog and a total lack of hand-eye coordination, I’m surprised that I can type at all.

5. Eyesight. Clearly, I’m thankful that I still have my eyesight for the most part. Recently, I’ve had to put reading glasses to use as my arms are no longer long enough and my kids wouldn’t be willing participants in holding papers three feet in front of me so that I could read them. Not only that, but it seems as though my eyesight gets worse by the day. I have to set the font type on 14 as I type this two feet from my face, just so I can see what I’ve written, and even then, that’s provided the floaty protozoan thingys in my eyes are swimming away from my center of vision.

6. Vacuuming. I know most people see this as a chore; I see it as an accomplishment in my house. I do have children that are perfectly capable of vacuuming, but I just can’t give up one of the things that I can still do relatively well, even if it takes a while, sometimes days to complete.

7. Chores in general. Vacuuming got me started thinking of all the chores around the house that need to be done and while most people see these as annoying chores, I see them more as opportunities. I used to dread and take chores for granted. I know, I might sound crazy, who would ever consider household tasks as something exciting. For a person living with chronic illness, I tend to hold on tight to the abilities that I still have and hope to continue having. Being able to complete a chore is an accomplishment as well as a moment of pride. Do I enjoy swishing the toilet? Honestly, no, but I can say that I don’t take that job for granted any longer.

8. Normal body function. Most people wake and totally take for granted that they can get out of bed, go to work, take care of family, etc. with minimal care about their bodily functions. As a person with chronic illness, I’ve become attuned to every breath. I can tell when my bp is up or down, when my breathing is shallow, when my heart rate is skyrocketing; you get the idea. Most people don’t give any of this stuff a second thought, and four years ago, I didn’t either. I never gave any of this “normal” functioning a thought at all, never crossed my mind. Of course, at that time, I was thinking about hopping in the car at any given moment to go to any given place.

9. Cooking. I would think that most people see this as just one more thing on the “to do” list for the day. I mean, I think there is some sort of law that states we have to feed our children daily, right? I was one of these moms that used to cook a well balanced breakfast (usually hot) every morning, make all sorts of fun stuff for lunch daily, and cook dinner at least 5 nights a week. Yes, I used to hate the dreaded question “What’s for dinner?” now; I’d give just about anything to cook for my family again.

10. Exercise. Granted, these days exercise is everywhere and many people engage in this activity for their physical health as well as mental health. Then, there are those that complain about their weight, or how tired they are, or how they can’t get to sleep, blah, blah, blah, but they choose not to do anything about it. Let me tell you, I bet if their ability to exercise was taken away, they’d think otherwise and start exercising. I used to walk, run for miles, ride my bicycle, run around with the kids; all sorts of physical activity. Now, I’m reduced to Wii bowling.

While I used to be one to take for granted every one of the above listed items, and while most of the items seem mundane to say the least, I certainly have learned to appreciate the small things in life.

So, appreciate the little things and the big things for that matter! Don’t wait until something is gone to miss it. Live each and every day as if tomorrow you could be diagnosed with some weird-off-the-wall-chronic illness-that not to many doctors know about-much less treat.

Try to find joy in all things, even if it is just swishing the toilet.

Sunday, March 17, 2013

Small Victories


When one is suddenly struck with some weird-off-the-wall illness that nary a doctor can figure out, so we have to do all research on our own and figure out how to live a semi-normal life…we tend to learn to depend on small victories.

My Big Handsome had a conference he had to go to a couple counties up (few hours from home) for work. We decided to turn it into a mini-beach vacation, plus we could get in a small family reunion as well with the in-laws and extended (military) family that happened to be visiting the states from Germany.

While Big Handsome was at the conference, I was to take the kids to the local Art Museum. I decided that this is what we would do as I am teaching an Art History class next year, and who doesn’t enjoy an Art Museum (except for those of us who have a hard time driving on our own, driving on our own in a new town, driving on our own in a new town with a bunch of freaking one-way streets, standing for long periods of time, and just plain freaking out when put in new situations)?  This means that I would have to drive, with the kids, on my own, in a town I’ve never driven in, did I mention the freaking one-way streets??!! Mind you, I did do a bit of research beforehand and attempted to commit to memory the satellite map where I’d be going (which can be dangerous for a normal person, much less one with frequent brain farts). And, no, I don’t have one of those fancy phones that one can talk to or get GPS or any of that really cool stuff. Still though, for someone that doesn’t even drive locally, this was definitely going to test my, well, everything.

I began to feel the anxiety earlier in the week. The morning we left I just rode in the car, doubled up on meds of course, and hoped that everything would turn out ok. We arrived at the convention center where we dropped Big Handsome off and our choices were to pull around the block and park for 2+ hours or head off on our own to the museum.

We chose the latter. We made it there safely after a few necessary turn arounds (which under normal circumstances can send me into a complete panic attack). We had a wonderful time at the museum, viewing many art pieces from the artist’s that we will be studying soon. I was so glad we went. I didn’t panic the entire time. We had just enough time to casually walk the entire museum with a bit of time to spare in order to get back to the convention center on time to pick up Big Handsome.

I must say that I was so stoked that I was able to take the kids to the museum and not freak out!

We all need to look forward to, learn to appreciate, and never take for granted the small victories J