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No one knows what my daily life is like

SassyBetsy

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I can't believe how fast the summer went and it is cold again already. I feel like I missed the whole thing because I did with the pain and just all of this stuff dealing with. And I am tired of it and I can see how others are. The cheering squad is not as enthusiastic and all of us are in the unspoken bubble of don't say it yet but what if this is it and it isn't going be all better. Then the doc says oh sure recovery happens. Meanwhile I am not getting better and the pain goes on and time goes on and more time is needed maybe but it takes a toll this waiting game. And does it have to be filled with so many annoyances? No one knows what my daily life is like really anyway and they say things just to cheer me and things you just say you know.

 

I got some nice samples from doc of these insulin pens I just love and he said he would give me samples when I run out so don't worry about insurance and see now that is the kind of kindness I am talking about and wow. I am spinning more than usual over that one. I love the pens with the teeeny needles that don't scare me. The cost of the meds is nonsense anyway but just getting anything approved to use is simply madness. Why does the insurance get a say in what they cover anyway when the doc prescribes it for a reason and there is always generic but what does insurance think it knows better than a doc what to do? NO one knows that I am calling the insurance all the time and the pharmacy and that my daily life is dealing with all these silly problems like getting the meds to control my painful existence. I am told to be patient by these people who don't know what it is like and they don't care because they have their own life's problems on their minds and lunch breaks is soon. NO one knows that I endure these people talking to me in such a condescending manner or in a scolding way or annoyed with hey it is you again and I already told you how it is. No one knows that I don't mean to cry but my stroke location makes it hard to stay calm cool and collected like I used to be and that I will think of some snappy remark I should have made later but for now all I can do is cry like some hysterical woman so I am viewed as unstable and in fact No one looks at how this situation is contributing to the thing like who has to be in pain and have their meds rejected by insurance constantly due to some dosage crud like the 3 capsules of gaba 3 times per day are 900 mg at a time max but I can choose to take less but that is rejected but then the other doc prescribes a 800mg tablet 3 times per day and that is approved. No one knows how hard it is to live in this illogical world now that invades my every day life.

 

I used to have other things more interesting to talk about. Even I am boring myself. No one knows what it is like to try and go out in my life remnants and attempt to salvage what is there and worry about can I do this and for how long. I was never insecure to this point that is nearly debilitating. I am told just stop and rest now but I fear that if I do stop that I will never go back to a real life ever again. I want to keep at it and I want to succeed. No one knows how hard it is just to get there to school all the prep to do before I leave the house even and just to get showered is a major thing now. And I have to have help and that is a chore in itself. How to be asking without driving others nuts. How to deal with that I am not doing it myself so it isn't the way I want. That is what makes me keep trying to do things. I want to arrange things in the kitchen the way I want them so I bumble in there and stand up a while so I can fuss about. It is meaningless because it all gets messed up; again but just like when the kids cooked as teens remember that so it is nice at least i am home and not alone. No one knows what it is like to be complaining and then to suddenly be hit with the blessing of it all at the same time like this. these things I never thought about before and wish were not in mind now.

 

I don't want to think about any of this stuff for a while. I want to go out for the weekend just anywhere and eat and be merry. Cant drink with all this meds going on so I skipped saying that word. But I know that I am not someone anyone wants to go out with now. i am all drugged up and delicate on the edge of how long until the next pain attack. And this is rare so no one gets what this pain is all about. And I get sleepy then or sick to my stomach and won't I just stop complaining. I am not complaining but just stating the current state I am in. Or I need something. I am so dang helpless to do so many things for myself and so of course I annoy others with my neediness. And what else do I have to talk about but I try to avoid this topic and with some I manage it. It is just my life all the time and I want to turn it off for a while. I don't want to be me this weekend. Is that a song? I just want to forget all of this and go someplace else rather than looking at my home.

 

I am redecorating. I can't clean but I can order online. I want different. New. I want to do what I always wanted but was frugal or what busy? So a few changes here and there make me happy in my very small box of a world. Got a new red toaster delivered just because I wanted a red one and the black one still works. I gave it to goodwill. Big deal. But it makes me happy to have a red one in the morning with my coffee. I can stand just long enough to get toast. LOL. I got a keurig so I can get my own coffee in a cup when I want it. The water is already in it and I just push the button and don't have to pour anything because it is in the cup. Away I go, toast and coffee. No one knows what it is like to not be able to cook anymore after years of doing all the cooking in my kitchen. I wont be baking this holiday time and I am sick when I think of it. the kids will do it dont worry and it will be nice and maybe we can get take out or go out too and it doesn't matter about the cooking being gone anyway when I can't walk or stand long now and the real problem is this: I look like ok so in the chair I can do everything because I am not paralyzed or blind so just get on with it in a chair but that is not it and no one knows what is like this spinning and blurring world that distorts with every move of my head. Meds don't help the situation either. I fool myself maybe that no one notices.

In class I nod off. I went to a conference and I was there taking notes and I would nod off and my head would jerk and my pen scribble off the page and I would wonder if everyone notices. No one knows that it is the meds and that I am still myself in here still thinking. I raised my hand and made my comments. I am determined to still be me but this stuff has to cooperate here and I have to choose between a nod off and pain and this is not fair but it is here and no one knows what this is like.

 

I go shopping and to lunch and put on my new clothes which have to be pull on things preferably large comfy moveable because I am sitting in a chair and I need it comfortable. No tight seams anywhere. Has to be pull on easy no buttons, no iron no dry clean. I go out and it is fun and cheery but out in the stores the world is big and confusing looking not like before. NO one knows what it is like for me in that my favorite stores that I don't really even enjoy it now that it is so distorted and my old mall lunch days are changed forever.But I want to go home and when I am home I want to go out. People say get out and don't stay home and I go out and then they say you go out too much so stay home and get rest. I am no better at pleasing myself or others than I ever was before but now it seems even more confusing and irrelevant to anything as my view is changed to anything that is not painful is good and nothing else really matters.

 

Where have all the people gone? No one knows what it is like to be a spectacle in public with someone arguing with me in a wheelchair about where I want to go next lol and that I can't just go leave get away, I got out last week to the mall and I saw a purse in the window and I liked it but didn't have time to stop and so away we went. So this week I was out a different mall and I saw purses in the store. I insisted on going in to buy it but we were there for other shopping and so there was a bit of a tiff about what to do with other people vs what I wanted to do. I don't get to go back later by myself or when it suits me to do things and I have to take advantage of when I am out. I also don't need or want anyone telling me how to spend my money or what to buy or not. I know it was change of plans and spontaneous but it was just for a minute to look or so anyway who cares. So my daughter said she wanted to look too so she wheeled me away despite the looks and grunts behind us and we emerged with two new purses for winter and had to deal with some attitude from those who went to the car but got through it. I miss my independence. online shopping isn't for me and I love to get out for real. fact is that we go to malls more than did before. I even got brave and pushed my wheelchair like a walker one day and i went a few steps. I noticed I had an audience and one woman was smiling at me or perhaps mirroring my own huge sneaky grin. So I have a brand new black purse which I refuse to just put a backpack on the wheelchair as therapist and everyone suggests. I have always carried a purse and usually big ones. It is part of me. I wouldn't be me the woman with the purse. And yes I have too many probably but I recycle through them non stays in the closet forever. Anyhow the one I bought was a cheap one that probably wont last as long as a designer bag anyway. But I felt good with it. Is retail therapy a shopping problem or is it a nice way to indulge that materialistic whim: I don't know the answers but I really enjoyed putting my stuff in this big purse and carrying it around when I went on the wheelchair bus. I hang on to it for dear life but it feels normal to have a purse in my lap. I needed that spontaneous whim and my daughter is a bit like me and saw a bag she wanted too and away we went like two banshees making trouble as usual with the menfolk. Or sometimes we are the ones clashing lol but not when it comes to the shopping, I never had time to do a mall when I was working and studying. I can't go and do like I did before. No one knows how it is in the stores even with looking at many things like that is making distortions and being wheeled around is like being in a funhouse where things look all weird. Even eating out the food my plate looks all weird. I am in some twilight zone. but please don't just leave me home. I am home more than I want to be. No one even calls. Calls start with oh I didn't want to disturb you ,,,, as if I am going to have a stroke while talking to them. The flowers have dried up; fallen apart and been thrown out and there isn't any more coming. I am just here and no one knows what it is like to be a thing unwanted attention and then to be forgotten. I am not happy with either situation so how is that for never being easy to please. People see me and are surprised I am still in the chair and then the looks on the faces that say this is all it will ever be and then smile to cover that thought and a cheerful "it takes time" thing. Malls are full of strangers so I like them.

Anyway have purse will travel is my motto for this coming weekend and week. I have an exam I hope not to nod through and a day trip I will sleep mostly in the car I hope. I want to get out away from home but I will want to come home and that is how it is these days. I am grateful not to be a prisoner in my bed so I must go go go plus i must get use outta this purse.



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Betsy,

I'm going to disagree with your statement no one knows what it is like.  While that is true of those who have not had this happen to them, it is not of those who have had a stroke.  Here we very well know the feeling of wanting so badly to get better, back to some semblance of normal, and not feel like a burden to ourselves along with everyone else.  The frustration of that not happening very timely is something we also know all too well.  I remember trying to have people understand by likening it to a case of the flu you just can't fully shake and pull yourself out from under but that wasn't it.

i'm sorry but a box of chocolates, container of ice cream, or huge shopping spree doesn't make this feel any better.  The only thing that does is time and the best way to help it along is for you to make a choice.  You can choose to frustrate yourself and make yourself unhappy trying to rush things you can't change and make yourself happy, or you can learn to accept what you cannot change with the help of your friends here, and learn to find joy in what you may need to do differently and accomplish.   

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Betsy,

I pretty much agree with merichsen, unlike a few others who tend to be pollyanish, she is very much a realist, not inclined to be negative nor overly optimistic unfortunately, time determines what is in store for us. There have been several individuals stating that their vertigo and balance have improved, so it is much too early to conclude that your condition won't get better.

 

I have struggled for thirteen years, meeting with as many neuro- physicians, with the attempt to get a better understanding of my condition. They all seem to be in accord that  improvement is not in my future, indeed, I am on a steep sliding bond with a hard landing. What is in my favor is my age which will end my degeneration in the not too distant future. Hopefully I will escape Alzheimer's disease or a nursing home. But that is my story. Bear in mind, that I was told by a world renown neurologist that I am in a small group that doesn't recover. It appears that the majority of survivors show improvement to various degrees. It is not an easy road, but hope is essential without unrealistic expectations.

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You will find a lot of people here who have experienced what you are going through.  As a caregiver to my husband Ray for 22 years, the last 13 full time I also played the waiting game, waiting for doctors and specialists appointments, waiting for an antibiotic to fix up his latest infection, waiting for help (only had that the last three years of his long illness) waiting for life to improve etc.  Asha on here constantly posted on my blog "Go with the flow" and I kicked and screamed and carried on, wanting this to happen, wanting that to happen.   In the end I learned to go with the flow and life however grim had it's rays of sunshine peeking through those black clouds.

 

It is what it is.  Life is just life, changes are slow and not always for the best.  No we do not get better (well my Ray had seven strokes, TIAs , fits and seizures) there are more set backs than improvements sometimes.  But the sun still shines, the birds sing in the trees, the months come and go and somehow we go on.  I wish I had a magic wand and could fix up all the lovely people who deserve so much better on here but I can't.  I do not feel your pain but I do understand your frustration.

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Betsy :

 

Maria & aj were right on target. I will just add my experience to you. right after my stroke I was feeling the same way about my life like you are feeling. first two years were the hardest to accept changes stroke brought in my life & it always made me very depressed & sad till I saw how my depression was affecting my young son & my husband who chose to stay by my side in this journey. what I feel once you accept your current situation & stop comparing how life was & should be you will find happiness again. happiness is a choice. I feel once you reach acceptance level in 5 stages of grief you will feel much better & not be so upset with your new normal. though I feel to get used to your new normal you have to take active part in your life. few things I found it useful after struggling in my own life is 

1. having routine

2. exercise

3. trying to be as independent in your own life like slow and steadily doing more for yourself  

 I have found doing all these things have helped me accept my new normal & be content  & happy in my life one more time.

 

I also found blogging, volunteering, chatting with other survivors all very therapeutic for my soul

 

Asha

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Doesn't sound like a good day for you. You have lost your freedom. I certainly understand that. Well, at least freedom as you once defined it. All the little thingd can be as frustrating as the bigger things. I'm talking about the little things that make you an individual, whether it br s purse, or the clothes that you wear, or how you do your hair. To some they seem trivial but they are not, they are what define your personality and all of s sudden you have to adapt and accept this new personality which does not feel like "YOU". I have to wear pull on slacks and t-shirts and sweat pants because they are the only thing i can get in and out of. I don't normally wear these clothes. They do not represent my personality. I feel like i am in costume. I was always well dressed and well put together. I did not wear designer clothes but i looked nice when i left the house. I received compliments on my choices. Now i dress like a slob and yes it does affect my mood when i am out and about with other people. It is not me. It is who my stroke has forced me into being. I cannot be myself anymore and it is a very disconcerting and disconnected feeling. I feel disconnected from my personality, from my soul. I no longer have the freedom to express who i am. Glad you bought that purse. Go buy another one! I also get the redecorating thing. Go for it. I look around my house and see all the compromises i made in my art, my furnishings, my books , and on and on. I saved for better days. Well, if this is going to be my last hurrah then i want to choose things that make me happy, that i find joy and comfort in. Perhaps it is because i feel so stifled and suffocated by this new me. We are who we are. I keep wondering what am i going to do with the rest of my life. I have lots of interests and passions but i can't pursue any of them in my current state. I can't pursue anything that once gave me joy. I am totally at odds with my body. My body and my heart no longer work with each other. I am getting closer to accepting my fate but what in the heck am i going to do with it??? I want to thank you for your honesty. I understand the angst, the pain, the frustration. It is slow, slow, slow and how to move forward is not easy. Momma said there would be days like this but i truly did not understand until now. You have to start all over and use what wisdom you have from your past life to carve out something that makes sense in this new alien world. It's like being reincarnated. What can i bring to this new life? Well we know we can bring a new purse and new shoes, intelligence and creativity, and maybe some help and wisdom for the other aliens when they land on planet earth. ;)

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Thank you all for your heartfelt responses and wise words. I guess I should have been more clear that I mean that people in my little world don't understand my daily life and problems even though some of them are living along side of them it is not the same knowing of course as those of you on this site or any health support site that people have walked this path before me.  That makes it hard especially when they don't really understand why going down a hill in a car makes me feel ill and other such things that seem weirder than life and i get it that this is sometimes ridiculous to them. I get mixed messages of accept this and then work hard to change this. For me I never know what the things are that I cannot change until I work exhaustingly to change it and fail. I will do that with this too, work on changing until it just doesn't and how long will I work who knows. I haven't decided what is something that cannot be changed but I do know what I want to change so that is a good place to start. I fear being blocked and not advancing because I accept what this is. It is still fresh and maybe there is a chance but I won't look back and say what a waste of hope even if I just stay like this forever. Like I said before this may be the better days than what lies ahead which is always a chance and a scary thought.

 

Thank you for understanding about the identity piece and what a complicated thing that is.  And the freedom thing. And thank you for pointing out that a day can just be not so good. My friend said a wise thing to me and that is that I'm either going to get better or I am not and that this outcome has nothing to do with the recovery journey. I did not get it exactly until I read the above response about  carving out  something that makes sense now. I am not sure what I can keep and what I have to create right now because I am not sure what I have. still have.or can get.  I can still carry a purse or a briefcase from a wheelchair and many do daily but I wonder about this "as the world spins" thing and what I can do with this but I am able to still go to classes so maybe I can keep some goals I have. Guess I don't mind the yoga outfits too much. And yes it is sometimes a thought that will I be alive long enough to get that order in the mail so in a way I had to beat that fear and just not think that I can't buy anything because I am going to die tomorrow. I watched my family members live like that and keep trimming things down. I guess if I examine this closely I am buying some new stuff as a statement that I am not going anywhere and if I do go it isn't like I am planning and living like I am. I really had not considered that piece but it fits.

It is my birthday month too so I had some gift cards and some luncheons with shopping so it isn't unusual for me to shop this time of year and so in a sense I am doing a normal thing not changing things just because of this. I am also shopping for the holidays as usual because I am one that likes a lucky find and I save things for the holidays. Right now I have holiday goodies from Costco tucked away so I don't eat them lol. In a way it is risky to be planning ahead because this happened so suddenly and I have a sort of PTSD about it. I am determined to continue in my old life here and I am thankful to those who are helping me do it and perhaps I am silly to want to be understood when in the long run they are helping me despite not knowing. I am determined to live and live well last hurrah is a good way to live any day.

 

My Physical Therapist told me to not compare myself with prestroke but look at where I was last week and what I can do this week. She said I must be able to see progress. I understand her completely and it certainly is a wise plan and frugal outlook. Only problem is that I am some kind of lofty grandiose thinker maybe this brain damage contributes but I am looking for more than cheering on 5 more pedals on the bike or what else am I even doing in therapy? I want some real accomplishment. Like now I can sit up on my couch when after stroke I fell over sitting in bed. Now that is progress. Stop clapping for silly stuff like yay more pedal pushes so what if it doesn't get me closer to balancing on a real bike so maybe it does but hey this is irritating for trivial stuff because it makes me feel that this is all I will cheer so please stop.

 

I am not giving up hope but yes I have miserable days because I want so much more than I can do right now and if I didn't have that misery then I would stay in an watch netflix which would be so much easier than studying for this exam but I am crazy like that and want want want which tends to irritate some folks. I want to say I am happier being miserable toward ambition than being content toward dissatisfaction. Or something like that only I can't explain it. Sure I may lose this soon especially if this pain keeps kicking my but I hope that I can continue to be Irish and fight this thing to the death.

 

And thanks all of you here for listening and understanding and for watching me stumble around without being too judging.

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Ahhhhhhh. The frustration of therapy. Our expectations are high. We look around us and we see people who are like we used to be. How can you not compare yourself to prestroke? We are reminded everywhere of how life used to be. Our therapists are normal and have fulfilling lives. It is always right there in front of your face. If i lived on Planet Stroke it might be different. Yes, you are always improving . One rule i have made for myself in therapy is to always go above and beyond what the therapist asks of me. One therapist called me an overachiever and I thought, Heck ya, i'm fighting for my life. I don't have the luxury of being slow. Life is a finite amount of time. I have to keep going. I have to make the best of what i have or i have nothing. You keep going girl anc don't let anything or anyone stand in your way

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