Sunday Stroke Survival~ Social Media

Why as a stroke survivor or caregiver for a stroke survivor should you Tweet, pin, Facebook, or blog? For a few very good reasons

• You don't stuff your feelings
• You find out you are not alone
• Get and share information
• At least I don't have it as bad as the other guy

These are just a couple reasons. Nobody knows the challenges I go through on a daily basis as someone who's walked in my shoes. They might not have had as devastating, or easy of a time with their stroke but they know or can relate to some of them.

It is so easy to think, as a survivor or caregiver, and stuff all the negative feelings. Be warned, doing this only hurts you and those around you. By saying you are having a bad day acknowledges those feelings to anyone that will listen. I've had my share over the past year and a half. If I had stuffed those feelings, I'd be in sorry shape about now both as a stroke survivor and a caregiver. I'd be ready for the closest mental hospital and consider it a fun vacation! 
 
If I post "having a bad day" on facebook, or twitter, myspace, or any of the forums, or blogs that I write, I guarantee there will be at least ten emails or telephone calls from "friends" or family  that want to know what's wrong. That doesn't include comments. I put friends in parentheses because these are cyber friends. People I have never met in person who are closer to me than some my local face-to-face friends. You all know who you are.

Sometimes you don't want to feel Abby Normal. Like you are the only one who is going through this. It is so easy to believe you are. A good portion of my day is spent on the internet for that very reason. Isolation is killer when you are disabled or the primary caregiver for someone chronically ill. As a stroke survivor we are chronically ill. Although in various stages of recovery, we are still not the same as we used to be. You are going to vent about injustices, balk at the way your life has changed, and share progress you've made. Misery loves company doesn't it? Conversely, have you ever had good news that you wanted the whole world to know? This is it! It's not called the world wide web for nothing.

Have you ever wondered if someone has had an experience that you had? If you truly are Abby Normal? Yep, I have. The social media and websites in general are a wealth of information. If you've just had a stroke, that's probably where this is most helpful, and want to know how long am I going to be this way. You are tired of hearing the  "very stroke is different" cop out. There are survivors out there who have been where you are.  When is probably the most asked question and to be honest there is no correct answer. I wish there was. You are part of an elite club that gets 3 million new members a year worldwide...the strokees or stroke survivors. Congratulations! You could be part of the third who have a stroke and don't survive. Believe me when I say I don't always think that I'm so lucky to have survived. You are not alone in feeling that way.

As you find others like you, who are a survivors too, you share experiences conquests, joys, disappointments, and information about being a survivor. Others want to read about these experiences to feel they are not alone. As you age in your survival, you provide a feedback source for someone newer to the club than you are even if they never comment.

I reach caregivers and survivors alike because I wear both hats. There not a week that goes by when a certain someone, Barb, who emails me just to check up on me. She along with Dean, John, Amy, and a long list of fellow strokees that become in some ways closer than family. They know you are struggling and care enough to send words of encouragement or to realize that life is dishing out too much for me to handle again.

I blog about what is going on because I can. I answer all my own emails still. I can't afford a personal assistant on my writer's income. Well, I could but I'd lose that personal touch I value so much. As an author I write and every experience is grist for the writing mill. Not everyone would be comfortable with airing their personal life, but I look at it as a way to measure how far I've come.  I'm a public figure anyhow. To me this is just journaling my journey. Instead of writing in diaries as I did so many years ago, I do it here. No, not everything appears here because I do also have a private side too.

By reading and socializing with others, your life is put into perspective. Things can always be worse no matter how bad they are. I know, I know. This is not ideal, but somehow knowing that someone somewhere has it worse than you makes you feel better. As humans we are competitive creatures at best. You can look at someone else and "there but by the Grace of God go I." There will always be someone worse off than you. You could be me or I could be Sarah (no not you). She's a single mom has no arms and one leg. She also has three children under the age of ten. To me, that would so much worse off than me.

Yeah, it's a reality check or wake up call. My stroke wasn't as bad as Diane's husband. I can walk after a fashion. I haven't had body part amputated because of contractures (knocking my wooden head). I am able to speak more than a few words. I don't have to use a catheter and diapers full time. Yes, by comparison, I am very lucky. As a caregiver we face equal challenges with our respective husbands. The major difference is Diane is not paralyze on one side like I am. Reading my blog she gains a new perspective- as I do reading hers about her husband's stroke and his struggle to be normal. So in turn I'm luckier and worse off than them.

I noticed last month one of the ezines (internet magazines) I republish to jumped on the twitter and facebook bandwagon...finally. Though I do not tweet or hang out on twitter anymore, it is a fast way to get snippets out about stroke info available. My screen scrolls too fast for me to read and respond. Something is definitely wrong with the connection between my eyes and brain since my stroke...it makes me dizzy and out of control, whereas before my stroke I almost lived there.  

My new love is youtube and pinterest. I can scroll at my speed. Although I've had a youtube channel for some time now, I never fully appreciated it's value until recently. Pinterest is also a new/old thing for me. Whether it's to find something that might help make life easier on me or to share something that helps and may help others. I post items that interest me or helps me write my books as reference. Pinterest is actually a pretty neat spot for visual interests. I learned to knit again using youtube. I can also grow my own food for my rabbits and chickens for less than a quarter of the monthly bill thanks to youtube. Reading too much really tires my brain these days so the 5-10 minute videos fit the bill.

So what does social media offer for the stroke survivor? You become mentally grounded. You are not alone. With networking, you get and share information. And finally, you really don't have it as bad as the other guy. Won't you join us? Blog, tweet, or facebook your stroke today. You and someone else may appreciate that you did. Too shy to put your footprint in the cyber world? Follow multiple blogs. You may not agree with everything being said nor even comment, but be enlightened. No one can do it for you.

Nothing is impossible with determination.

Sleepless Sleepiness and Other Irritants

Recently, I started waking with the "Gotta go. Gotta go. Gotta go right now!" It doesn't matter if I went before lying down. It doesn't matter if I've slept two hours or eight hours, the results are still the same. I barely or don't make it to the bathroom before warm liquid is running down my legs.

Now I do the fluid restriction before bed. I use the clock as I've mentioned in other posts, but to no avail.  At first I thought it might be a bladder infection, but the copious amount of fluids issuing from my body rejects that notion.

This morning was one of those times except I awoke at 1:30 in the morning after only four hours in bed. After putting on my AFO and shoes, rolling out of bed, and walking the twenty odd steps into the bathroom I found myself peeing into my brace and shoes. I didn't even get my panties down before catching the bulk of the flood into the toilet. This is down right irritating! No wonder I'm opting for full diapers again.

After I cleaned myself up and changed clothes I noticed the living room light on. My husband's hospital bed is in the living room. I went to investigate and found him on the floor in a heap, heaving trying to breathe without his oxygen on. As is my previous emergency training and my nature, I act first to remedy the situation and then panic afterwards. I got him to his feet. As he leaned doubled over the foot of the bed, I put his oxygen on. He kept shaking his head no. "No oxygen."

I thought he was saying that he didn't want it, but what he was trying to tell me was the
tube was kinked. I put the nasal cannula on him anyhow. Then we did the hand signal thing until I understood what the problem was.  Then I back tracked the line, found the kink and straightened it. I half carried him into bed. A miracle feat for a woman paralyzed or partially paralyzed on one side. I got him settled and he was still saying, "No oxygen."

I pulled the cannula away from his nose and I could feel it. I told him to look at my nose and focus on slowing down his breathing. "In and out" I started a cadence to slow down his gasping reflex. Then he realized, that he was getting oxygen. The panicked look left his eyes and  he drifted off to sleep again.

While I knew I should go back to sleep, I couldn't. The adrenaline let down effect had me by the throat and mind. It was like Friday when his oxygen machine alarm went off. I placed him on his rescue bottle of air and called the oxygen supply company. I don't know about other stroke survivors with aphasia issues but for me stress plays a major part in how bad I talk. When they answered the phone my voice was gone. Just trying to say my name was like pulling taffy. I had to take a couple of deep breaths just to do that. Luckily, the person who answered the phone knew about me and patiently waited for the words to come.

The what ifs that made me such a good storyteller played over and over in my mind. What if I didn't have this bladder problem and had slept all night. All of a sudden I was thankful for the mess. By the time I got settled down enough to sleep, there were other issues to be taken of...the rabbits, guinea pig, and chicken needed to be feed. The cats and dogs wanted to be fed, and let out and in. Medicines dosed out. For my hubby this means raising the head of the bed, handing him a water bottle and giving him one pill at a time (including finding the ones he drops in the folds of bed sheets), urinal or diaper change, and then lowering his head some, checking his legs for skin breaks, and making sure the humidifier on his oxygen condenser has enough water. By this time he's asleep again. The morphine does its job well.

Another hour monitoring his vital signs and I'm free for two hours. I guess I could do away with his vital checks, but old habits die hard. I toy with the idea of just drifting off to sleep but fear of not waking up in time for the next round of meds keeps me awake. I still head nod my way through the time praying he doesn't try to get up out of bed on his own again.

Don't tell me I should have had the rails up because I did. He scooted off the foot of the bed to try and get to his rescue oxygen and fix the problem with his line. The bad thing about being one handed is the bed rails. They are the type that have a knob that you have to pull out while you slide it down on both sides of the rails. One handed becomes a two part operation in increments to lower the rail to get him in his chair.

By 10AM I am able to once again lay my head on my pillow because my youngest daughter is here for a couple of hours before she has to go to work. Two hours of heavenly sleep for my sleepless sleepiness. Unconsciousness disturbed by the "Gotta go. Gotta go. Gotta go right now!" So it all begins again.

Nothing is impossible with determination.