Sunday Stroke Survival: What Are Your Fears?

Are you afraid you'll stay impaired for the rest of your life? I just past my 5th anniversary living post stroke.  I can tell you honestly, that the thought has crossed my mind quite a few times over the years.

If I'd had my way the recovery process would have taken a couple of months. I imagine this is true for most stroke survivors. In my case, I was making great strides towards just weakness rather than paralysis for the first couple months. If strength of will was needed I would have succeeded. Unfortunately after the first two months an injury occurred stopping most forward progress on my right upper limb. Then, within six months another stroke set me back to square one in my recovery and took some other things with it like my reading comprehension. Plus the high tone that was present with the first stroke became the dreaded, constant spasticity.

 But looking back over the past five years, I haven't lived my life in a vacuum waiting for my recovery. There have been many times over the years that I have had fears; both great and small. Who doesn't, right? Everyone has had periods of being fearful. I'm no different, although I don't focus on them as many do, but look up to my Heavenly Father for relief. I don't focus on what might happen or never happen.

When you are afraid, where does your focus lie? When you are a child, you ran for comfort to your parents. But where do you go now that you are an adult? I can no longer run to my earthly father. He loses ground on his earthly toe hold daily. I run to my biggest, baddest Daddy anywhere...God. But still the thought still nags at the edges of my consciousness after five years... will I be like this the rest of my life?

Truthfully, I hope not. But it sure looks that way from where I'm sitting. All the gains I make with the Botox and the dry needling is one step forward and two backwards. It gets really frustrating and tiring. I'm constantly in battle mode against my spasticity and weakness/paralysis. I'm still trying to get to the larger steps forward and smaller steps back stage. I am beginning to doubt and waver. Is this a fight I can't win? I've never had one of those before. Yeah, I've done my fair share of adaption and compromises. I consider those a win because I do get what I'm working towards. I'm thankful for even partial wins.

My solution...
As I said before, I'm not living my post stroke life in a vacuum. I attempt something new every day. I used to say learn something new every day, but I'm still in the relearning stage. Part of me fears that I'll be in this stage forever. After a stroke, there's too much to relearn. It all takes hard work and almost daily reeducation just to keep my mind working properly. Ah heck, my mind has always had quirks that enabled me to be creative in all ways. Just never this huge of a quirk to overcome.

Alive, awake, aware, active

I found this "Truth Time" clock on the internet. I found it to be an excellent example of living post stroke. On the quarter hour are the words: Alive! Awake, Aware, Active. First of all, as survivors, we are alive! Our stroke didn't kill us. Some of us wish that it had. I know that feeling, but it didn't.

Awake appears next going clockwise. Get it, clock wise. Your brain just had a big insult happen to it. Wakey, wakey time and shake it up. Nothing is worse than wasting brain power. Granted we have less brain cells than we did before, but the average person is purported to use less than 10% of their brains so we killed off a few thousand cells, we still have 90% that we never used before. Okay, it's like 75% left in my case, but still time to wake it up and use it. We're alive!

So it's on to the next quarter, Aware. Because we are impaired both mentally and physically, we always have to be aware of everything. Our surroundings so we don't hurt ourselves. HAHA! This doesn't work for me to well. Aware of what's going around us. If we just lay around feeling sorry for ourselves we miss out on life. We are alive!

The last quarter is Active. You remember the old saying; "if you don't use it you lose it?" So you are paralyzed. You can't talk right. You're brain damaged! Accept it and go on. Nothing will never be the same ever again even with full recovery because there will always be an again. You have PT exercises to regain the use of useless  limbs. These exercises also exercise your brain too. Make your brain do jumping jacks. Play hopscotch over those damaged areas. Each day I push myself against my limits. I may fail today to accomplish it but there is always tomorrow. Make your brain figure out how to do those things that you really want to do. Get creative. This exercises your brain also. Don't live on the pity pot. Self pity can be an morbidly obese, lazy way out if you over feed it. Allow yourself moments. Set an alarm to time it. When the alarm goes off, get active. We are alive!

You have fears. That's understandable. Strokes or any life changing event can bring them to a head. I just had one of those crazy images pop into my head when I typed the previous line. I pictured a zit. So when you have a zit comes to a head, what do you do for it? Pop it. Realize that the fear stems from a problem or perceived problem. Face it. It might happen. In my case, I will be like this forever and not recover from my strokes. So my attitude is to live each day the best I can. Will I have good days and bad or horrible days? Yep!  Am I limited in what I can accomplish? Yep! But if I don't figure out how to do it, it's my fault! Sure there are some things that would be easier to do with two working arms or legs, but I'm not the only one on earth facing this issue. Just like everyone else on earth. So is it really so different? Fears are fears. My question is what are you going to do to resolve them? Things my be difficult, BUT...

Nothing is impossible.

It Totally Amazes Me and Thank You All

I was going through my stats this morning and am floored. I do this periodically. Since I changed my blog over to stroke survival, I'm getting pretty close to 5K to 10K hits per blog. I realized that there was a need to talk about surviving and living post stroke, but the response to my weekly blog?!

When this was strictly a writing/author website, the numbers were fair. But this was a shocker to me. I'm no expert in this area. I'm just a person who was fortunate/unfortunate to survive multiple strokes. I lived to tell the tale.

I actually don't see comments or emails from all these views, Thank God! I would need a team of office assistants to get them answered in a timely fashion. I just wanted to say "Thank You!" It truly humbles me.

Sunday Stroke Survival: Well, I'm Finally Doing it!

We've got some changes occurring on the old homestead in the coming months. With the sale of my Golden Isles house brought some added/needed dispensable income. Not as much as I would have liked but I'm thanking God that I got some. I'm finally doing it. I'm having two ramps built for easier access for me into the house. It's only about time!

 The first one is off the front porch. My recent episode with my knee made this an imperative. Lesson learned. We are leaving the stairs at the left of the front door and adding the ramp to the right side. The new driveway will loop around to that side of the porch making it a shorter walk into the house for me. Also all the chickens and rabbits will be on that side too. You may remember that this side of the property is bordered by a high ridge. Also ivy that caught my AFO causing my fall.

The second ramp will be off the back screened porch. With the purchase of a metal carport, we are moving all the rabbits out of the rabbitry. We are also building a dual chicken coop and run in and off the rabbitry. Less chicken poop to slide and walk on. Since I need my AFO to walk wearing muck boots is out of the question. I guess I could alter them by splitting one up the middle, but that defeats the purpose. The second ramp will be a dog leg fashion with a 6' deck off the old rabbitry shed. It will be wide enough of an area to pull my wagon up and down it. The old rabbitry will be converted into a food pantry. The air conditioner will cool it during the summer and with all the insulation it won't freeze inside during winter. I have to store all our canning and dehydrated garden stuff somewhere. Lord knows, trailers aren't built for storage. The ramp and deck will make "grocery shopping" a breeze.

I've lived here a year without the ramps, but I realize that it was only a matter of time before the stairs became an issue. It will also be easier for Mel. I see it as a win-win. We both aren't getting any younger. I think a year of doing without is enough proof to myself that I can do now I'm taking it easier. Yeah, I'm stubborn like that.

Something like this

The new set up with the chicks and rabbits will work out better for me also. All under one roof so to speak. All the grains and food in one place instead of opposite sides of the house and/or barn, a handy water source for all, grooming station, etc. During the winter, we can hang tarps to keep out the chilliest winds for our comfort while working. The cold does not bother the angoras. They love it. Most important to me, it will all be level. No steps up or down. No sweeping floors only raking out the muck into piles to be carted off. It's what we hoped to do with the old rabbitry building, but we fast out grew the space.

I'm still hoping for the long ranged plans of four tiny houses on the property, but I didn't get that much capital. So we are making do with what we got. I plan to still clear some trees out for better sunlight and we still need to bush hog a lot of the property into usable space but again these are hired out jobs to be done. One step at a time.

Nothing is impossible.

Things That Make You Say Owie!

I've had a very interesting two weeks. Not in a good way. This should have my Tumbles and Stumbling heading to it because that was the start. A stumble followed by a hard fall. I was walking towards the rabbitry trying to unkink the garden hose.

The south side of the property is bordered by a 10-foot high ridge line covered in small trees and ivy. There is a sort of leveled patch (about 16 feet wide between the ridge and the house). This is where I was walking. There is a thick undergrowth of ivy now

covering the area until we get the new driveway built. I'm focusing on the two hundred feet of hose and trying to straighten it.My AFO clad foot caught on the vines. I pitched forward without anything handy to grab for regaining my balance. I went down hard on my left knee, finally stopping my forward momentum with my forehead colliding with the ground.  Seeing stars was an understatement. My whole world was cockeyed for a few minutes. I tried to get up. I failed. I failed again and again. There I was sitting on the ground. It was a "help! I've fallen and can't get up: moment. I hollered for Mel to help me up. This was one of the reasons for me not living alone anymore. We had been planting the front vegetable and herb gardens. The last thing we had to do was water them in...thus the need for me straightening the hose.

Well, my body was already hurting because of my post stroke spasticity and the Botox wearing thin. With my advancing age, I knew I'd feel worse tomorrow from this fall. I always do. As expected, I had the bruising and scrapped knees and elbows that usually accompanies such falls outside. I found each and every one of them when I showered later. I truly did not know how banged up I really was until my Botox started kicking in. Similar to my bad fall just after my stroke when I tore my AC ligament in my shoulder. This time it was my left (functioning) knee.

About two weeks later, I could barely able to bear my own weight. Climbing stairs to get out of the house or back into the house brought tears to my eyes. Of course, the Botox was kicking in again so I noticed the pain more. I couldn't brush it off as my left knee compensating or being strained by the affected side.

I went to my PC. Sure enough, a badly sprained left knee and deep tissue bruising down to the bone. Nothing broken or torn, thank God. But then comes my dilemma. His orders...stay off of it. Now for normal folks this is fairly simple to do with crutches or a cane. But, for a stroke survivor who only has one fully functioning side? It's impossible. Sure my roommate can cook , clean, garden, tend to the animal, etc. But what about things she can't do for me like going to the bathroom. Sitting down and rising up from the commode has been killer. Even with a wheelchair there are transfers in and out of bed, and such. While I can walk with my AFO, I still depend on my functioning side to do most of the grunt work.

The "stay off it" lasted about three days. I went stir crazy. I wanted to be out with our new chicks, our rabbits, and the garden. Those three days felt like weeks by comparison. There's only so much time you can spend on the computing, knitting, and watching television. My mind was turning to mush and for an active person like me, that was as long as I could stand inactivity. Yes, it hurts to move my knee and honestly, it was close to a week before I tried the stairs. Going down I always lead with my impaired leg, but climbing up I lead with my functioning leg. I knew that if I was going to climb four steps down, I'd have to be able to make it back up again. I satisfied myself, grudgingly, with a porch view of our homestead.

Today, I'm back to taking the stairs again. I still grimace at climbing back up the four steps, but I'm doing it ever so s l o w l y. But cane in hand, I walked around the garden beds today. I couldn't help myself picking a few weeds that have popped up with the rains. Should I be? When has that ever stopped me? But then again, if you don't use it; you lose it right? Yes, I should probably have given it more down time to heal, but if it ain't broke then I should be fine. It's stiff from all my inactivity, but I am using my cane. I had gotten to the point that I rarely used it close to the house but until the pain is gone, my shadow (cane) will be with me constantly again. I'm taking things slow for the time being.

But it makes me wonder. What if I had broken or torn something. How could I function? I mean they make a hemi walker for us one functioning sided folks, but what if you had no functioning side? What could I do then for weeks or months it would take for me to heal? Would I be bed bound the whole time? What a scary thought. I'll just resign myself to being more careful so I won't have to find out. Yeah, you believe that, don't you?!

Nothing is impossible.

Sunday Stroke Survival: Support Systems

You've been stricken with a stroke. It's devastating for you and those around you. What kind of support system do you have around you? If you haven't had an earth shattering event or SHTF happen to to yet, give pause to think about it. Being prepared is forearmed. Nobody is immuned. Life happens and sometimes it sucks lemons.

Now realistically, I am a realist, you can't prepare for every eventuality that happens in your life. I have a terrible family medical history. You name it there are several cases within my family on both sides. It's a constant battle of Russian roulette with all the chambers of the pistol loaded for bear. Take my grandmother. She had seven strokes before the last one killed her. She had that same pistol on both sides of her family. With that history in the mix, you'd know, even if I lived perfectly avoiding all risk factors, I'd probably have a stroke. No, I haven't lived my life up until my stroke with having no risk factors, I was living my life just like the rest of the world. I still don't. Living in fear of what could happen is no way to enjoy and live your life.  Sounds almost like an oxymoronic statement, doesn't it?

But as usual, I digress from the topic of today's blog. Sigh, It's just the way my brain functions these days living post stroke and saying what needs to be said. Back to support systems.

Who you have around you is important and a choice. Yes, I know families aren't chosen, but those who you keep closest and can actually help you is. Sounds materialistic, doesn't it. Actually I'm just being honest here. Everyone has in laws, outlaws, users, and true members despite adversity within their families. Some of you have none left when you sort through the lot. When I honestly searched through mine, I found less than one hand full. Now keep in mind between my four children and ten grandchildren, my in laws (2 sets), my blood sister (her children and grandchildren), six adopted brothers and sisters (and their children and grandchildren), my father and his wife that's a huge amount of folks in my immediate family. But a hand full (four fingers and a thumb) worth???!!! Yep. A lot has to do with distance between me and them. I'm talking about miles not emotional stuff.

When I first had my stroke, they were all around falling over themselves to help. Then, as time wore on (less than six months), they all had the attitude of being put upon. I don't blame them. It was time for me to figure out how to live again. They had their own lives after all. I did it all or did without. What other choice did I have? A heart attack and two strokes didn't kill me. I was still alive. I'm actually grateful to them for the attitude. If you have someone who does everything for you, they are hurting you rather than helping you.

When I was first thinking on this post, my first suggestion that entered my mind was the church. DOH! I'm a minister, right? But the problem with using your church as part of your support system, is it's great for your soul, but lacking in everything else. Most stroke survivors blame God for their strokes and are angry at their deity. I've written about it HERE and HERE to name a few places. You won't meet very many stroke survivors in church. Your pastor may be consoling, but he/she really doesn't know what you are going through. He/she hasn't walked in your shoes.  Christ may understand what you are going through, but a regular minister, me as the exception, can't fully understand.

 But, I ventured out into society to seek my own support system. I had my writer's blog (this one) and started writing about my life living post stroke...because only 1/4 of us actually die from our strokes. At best, it's the blind leading the blind. Except, there were people like me who'd had a STROKE and survived. Some were more experienced (had their strokes years ago) and some were newbies (just had a stroke). There were caregivers of stroke survivors and a whole world of researchers who were reading my blog and reached out to me. It sounds kind of tooting my own horn to say this, but with over 20K hits a month, I think it's worth mentioning. Of course, there were my regular readers of my writer's blog who have continued to read this blog because we had formed a relationship over the years too. Can you believe that next month marks my five-year anniversary of my first stroke??!! Time flies by when you aren't sitting still feeling sorry for yourself.

It's all part of my support system. I know I'm not alone in this surviving business. There's nothing worse than being in trouble and feeling like you are alone. That's how many of us stroke survivors feel. We are shut out of what "normal people" do because we can't do that anymore. Or at leeast not yet. It can be a pretty lonely existence. Except for folks like me that fight kicking and screaming. <Grin>

For me, I had a stroke and a second one being caregiver for a dying husband. I was before and after my strokes until he died. I lost my ministry job. I was unable to drive, barely speaking intelligible, paralysis in half of my body, and a caregiver to boot. In comes part of my support system five months later in the form of my cardiologist. She had known me for decades before I was her patient. A simple question..."Are you driving yet?"

I honestly hadn't tried. But that simple question spurred me into action. I started driving. Very hesitantly at first and only short distances. Luckily my grocery stores, multiple restaurants, and my pharmacy was only a mile away. I also had driven with my left leg only after my hip and knee replacements. So it was just a question of practicing again. See, no experience is lost. But this was a major hurdle of successfully living post stroke. I gained confidence in my ability to live a normal (or new normal) life again. I always say life is about adapting. I gained back a major source of independent living post stroke. So are your doctors part of your support system? Why not? If they aren't fire them and find a better match. They should be and it is your choice.

I needed more one on one support than just the internet. We all do. I found a local stroke support group. Actually, my speech therapist nagged me into going to a meeting. After about a year post stroke, I went and joined them. I had arranged for hospice to be with my husband so I could go. I liked the people. They had an active group. Lively, even. Nobody was in the poor-pitiful-me mode of thought. It was just the group I needed to be in. I was more absent than attending for almost a year, but that didn't stop them from calling and emailing. They still do.

I know some of you are in the same boat as I was. Pick up the phone and call. Can't find a listing? Call your local hospital first and ask. Next try the county council on aging. Even your local Chambers of Commerce may have some information. Ask your neurologist. Ask your therapist. Don't give up.  There are support groups for almost everything. You are not alone.

I finally started going to the support group here in NE Georgia. It's only taken me a year. They are not as big as the one we had in SE Georgia, but it's a start. They are very happy to have me. Last meeting there were 6 members. A far cry from the 50 out of 200 that regularly attended my brainREconnect group. It is run by the local hospital. Or, should I say the neighboring town. At 35 mph on back roads that's close. In a rural community such as this. One town runs into the other. It's only a 10-minute drive from my home. I'm going to shake them up and revamp it like my previous one. They have pretty close to 100 member total. Currently, I'm picking the brain of some long time residents to see what's available. I've found a pottery studio, and possibly yoga instructor that's willing to work with us. The only problem is financing. We need some financial backing and a nest egg to fall back on. Until then, I'm thinking of picnics in the local state park as an outing. There are other such venues available too that are free or very low cost.

This group has reorganized and has new leaders so the possibilities are endless. It's just up my alley as a leader not a follower. It gets me off the homestead and around others. Not that Mel isn't people, but "normal people" just take too much explaining.  So this year, I'm not only growing a garden, rabbits, and chickens, but a support group as well. I've got an appointment with the hospital administrator to talk about a survivor's visitation group. My being a member of the clergy doesn't hurt to grease the wheels in this endeavor. I'll also be visiting neighboring hospitals that will treat stroke survivors. There's power in numbers. It also gets our group out there in the public eye. First I need to know the resources.

So what is your support system if the SHTF? Do you know? Do you know how to find it?

Nothing is impossible.