Sunday, May 7, 2017

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.

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