I haven't been on Stroke Net lately. Imiss the afternoon chats, the blogs and the forum entries. I miss myfriends.
The problem is that I have problemsreading now. My eyes spasm constantly, making it very hard to focuson anything. I was given Valium to deal with that. But if I try tofocus in on anything, like when I try to read, the spasming breaksthrough the Valium, and even gets worse. After a little while, I geta headache and start to feel nauseated. So being on the computer hasbeen difficult...at best.
Well, through the last 42 years, I havelearned to live with a lot. I have a very high pain threshold becauseof living with lupus and fibromyalgia pain and migraine headaches.I've learned to live with my right arm and leg tired and painful,since the stroke. These things have3e been relegated to the “that'slife” category of things. But I have been unable to learn, thusfar, how to live with the eye spasms.
I can tell the minute the Valium wearsoff because th spasms are i8mmediate and continuous. Focus is out htwindow. That is th most irritating, annoying feeling I have evenencountered and it dives me crazy. Sam an tell too, because Isuddenly become cranky and irritated at the smallest thing. He getsme another Valium and a drink, and I stop being disagreeable in about10 minutes. Of course, I also become foggy and dis-attached for aboutan hour. I'm not really aware of too much that is going on around me.
That has been life for about a month.I'm a little concerned that this is a new “normal” and may becomeless, but will not go away. I tried talking to Sam about that.
I know he is trying to help me staypositive about things by being positive, himself. But that doesn'treally help. So I tried to explain the inner workings of a strokesurvivor's emotions, based on my own personal experiences, and what Ihave observed from other survivor4s on Stroke Net, especially the newsurvivors.
We all want, desperately, for things toreturn to the way they were, the day before we stroked. We will clingto the smallest, thinnest, weakest, most ephemeral hope thateverything will end up just the way it was before the strokehappened. It's part of what makes accepting the stroke and it'schanges to our selves and our lives so very difficult for some of us.It is also why we are absolutely devastated when the “new normals”start to manifest. We become angry and can get mean and thoughtlessat the people we love ht most because we are hurting and need to lashout. It's a small wonder so many of us end up on antidepressantsand/or in therapy. Not only is a stroke a brain injury, it's a majormind-f.....
We cry and complain, wish and vent toour loved ones, friends and family alike. God bless each and everyone of their souls, all they want is to make us feel better, andmaybe make themselves feel a little better, there is the whole“seeing their own fragility in the survivors close to them<”so they all do the same thing. They tell us “oh, this is only atemporary setback. You'll get back to normal before you know it.Everything will be fine.” I'm willing to9 bet each and every one ofus survivors and those of us who are caregivers for a survivor havehear exactly those words. Perhaps even said them. All without anyrealization of how that sounds to 5hte survivor in question.
The people we love and trust most havejust told us everything will be just as it was the day before the stroke. We want SO much for that to be true that we believe them. Weeven hang our faith on those words and actively star5t looking forthat day when life returns to what it was pre-stroke. Devastationsets in, again, when the truth just doesn't match the words they gaveus. So do feelings of betrayal.
We trusted our loved ones, as if theyhad a direct line to God and had gotten that promise of a return to aknown and understood way of life directly from him. So, not only didour loved ones “lie” to us, but5 so did God. We become even moredepressed and bitter. Our ability to trust anything a loved one tellsus is now damaged. The next time we want to talk about a fear of anew normal, and we get the same “trying to make us feel better” answers, we feel like we aren't being listened to, or that ourdeficits, problems and fears are somehow being minimized and nottaken seriously.
Sam was visibly upset by all of this.He honestly had no idea that his well-meaning attempts to cheer me upand try to make me worry less have only made me feel as though hesees my stroke and the new “normals” we are discovering as lessimportant that everything else in the world, that I feel as though myloved ones are tired and bored with me “acting” as if my strokeactively impacts every waking minute of every day of the rest of mylife, that I have begun to feel alienated by my loved ones because Iam “a constant downer because of the whole 'stroke thing',” orthat I feel as though my loved ones are starting to feel as though Iam “milking the whole stroke thing for attention.”
I'm not asking him, or any of myfriends and family, to assure me that everything is going to be “allright” again. I'm asking him, and everyone else, to let me talkabout how I am feeling, vent my frustrations and my fears, and tellme that they are afraid too, but that whatever ends up being “normal”in my life, they will love me, be there for me, and help me any waythat they can, to agree with me when I complain that “life isn'tfair,” and to tell me that I am justified in feeling the way that Ido at that time, and that even if things don't get “better” astimes goes by, we will learn to better deal with things, together.All I want is for someone to tell me “ I have no idea what your aregoing through, but I promise that no matter what, I am here to gothrough it with you, to hold your hand, to cry with you, to cheereven the smallest accomplishments, to help you find ways to cope withor overcome challenges, and to love you, unconditionally.
I can face and deal with the newnormals and the challenges that come with them, as long as I don'tfeel like I am facing and dealing with them alone.
One of the first things I want to do tomake using the computer easier for me, is to set the computer us toread things aloud for me, and to translate what I say into text to besaved or posted.
The second is to have Sam, or otherpeople, read to me, and to get more audiobooks, so that I can enjoymy favorite authors and subjects again.
It's beensaid that human beings get about 80% of their input visually. I'dventure to guess that about 60 – 70% of that input is throughwriting. One would be amazed at exactly how much information there isout there that is in written form, everything from from billboards tostore hours to basic instructions for things. One can be very easilyfrustrated when it is difficult, at best, near impossible, at worst,to read. One even needs to the written definition of what symbols andicons mean the first time one encounters them, if they are unluckyenough not to have some one easily able to read to tell one what thesymbol means.
I am finding the world a much morealien and frightening place, now that my ability to focus visually,and to understand mentally, has been challenged. Where I could oncefigure just about anything out after skimming written information,suddenly I find myself asking for explanations of explanations orwhat it is that I used to be able to read.
I don't want to leave the house withoutsome one who can help me by reading things for me. Luckily, I don'tlave the house alone since I can 't and, frankly, 95 degrees + isjust to hot to be walking the streets of Tampa. So, I have help whenI need it.
My disability attorney does everythingover the phone, or if that is a problem for me, and it can be, sends aclerk or a paralegal to my house. That is comforting. They seem toreally care, even if I am jaded to know that the most probable reasonthey are willing to go to these measures is because without them,they don't get paid. They are in the business of securing disabilitybenefits for their clients and getting a portion of the retroactivepayout in payment. If they can't win the client's case, they don'tget paid. Of course, the more humanistic part of me still wants tobelieve that they got into disability law to genuinely hep people.But I digress.
The long ans short of it all is that itis very difficult to get along in a world when you cannot read oreven see straight. I don't know how I am going to manage th8isseemingly monumental feat, but with the help of God, Monster, Sam, myfamily and my friends, I am certainly going to try.