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.