Two parts to this post: One is about me and that I am in dubious shape and could use some, I dunno, TLC? And the second is about support, family, partner’s family and odd family reactions.
Okay, I got up this morning and was going to play badminton, as I had been too ill to do any other exercise this week. Only, I was not a “well woman” even by MSA standards. Linda pushed me there and I am not sure how I looked BUT not even the friendly director would play with me…or come near me. Since I could barely raise my arm and hit the birdie, even once. And if I missed and it fell, I looked at it. I asked Linda, “How bad am I?” And she said, “Your face is….grey. You don’t look good AT all.” Well, I warmed up enough to get some adrenaline going, and played a doubles game and then went to the accessible toilet because of course, like rats fleeing the infested island, everyone was leaving (meaning, ow in the stomach). After 30 minutes I went out and played for another 25 minutes and then had to be pushed home. I was supposed to do ebay today, since I had 25 lots of Manga on and wanted to do 50…except that, it was straight into the bathroom with me and my Gatorade. The pain and weakness were pretty intense (like "put on these goggles to see the nuclear blast" intense), and there I stayed for about three hours until Linda came in and found me sort of wacked out mumbling, “I’ve gotten so down I can’t get up.” Meaning, I thought my body was in some form of failure. I had drunk three Gatorades, to keep up electrolytes and liquids even though there was nothing left to..er…do, as it were, it didn’t stop the God awful cramps which had me moaning and screaming (Linda said: "I felt like I was some expectant father out in the waiting room"). Well, my whole body was shaking and Linda sort of half carried me to bed where I was in shock and my teeth chattering and my whole body quivering and fainting every few minutes as I kept saying, “So low, so low, can’t get up.” And I told her that this was probably the start of fecal incontinence (You know: always look on the bright side of life!).
Linda was like, No! There is no ebay for you. And I lay there and slept. Actually, I had woken pre-badminton at 5:00-6:00am in such pain that I needed the opiates and the muscle relaxants and squeezing a bear to hold on until they kicked in (which should have been a “this might not be your BEST day” indication).
I woke up at 7:15pm, after Linda took a call. It was from her parents. They do not call…well, almost never so I asked, “Is everyone all right!” Because I thought this was the, “Your father had the heart attack” call. I asked, “Is everyone alive?” And she put her hand over the phone and stuck her head out and said, “Yes, everyone is alive….except the calf, it just died.” And I sort of blinked and did a “Oh these FARM families” because this was what used to happen every year, 50-80 calves and they call every time one dies. Yes, I know it is lost stock and all that but…..
Anyway, I had done some prep for ebay yesterday so put those on, along with three Linda had done while I was in the bathroom (the rest of the time she read a ROMANCE – oh well, did I want both of us to be in pain? No.). So that was eight lots but by the end which was 45 minutes later I was feeling not very good and got out the thermometer and sure enough I had a 2.5 degree fever. Which means my autoimmune is compromised or (what I believe) that my autonomic system is SO low, and SO run down that it simply can’t sustain anything, even basic body temp or maybe too tired for white blood cells or to cool the body off, I don’t know. All I know is my body has crashed three times in less than a week, and this is the worst I have been since 11 months ago. So yeah, let’s say I have pushed so hard….I fell off a cliff. Does this mean I am totally dedicating myself to recovery or that MAYBE, I am already thinking, “Yeah, but if I go REALLY slow, I could do those 8-12 ebay manga lots tomorrow?” Well, you provide the answer and we’ll see how well you know me.
I would really like to be better because body shaking, fever with no infectious cause and looking grey and like I might ALREADY be dead is a) not fun and b) what zombies usually look like right before they BECOME zombies. Any ideas?
Okay, second part which came about because of Linda parents, who called to let her know about every obscure cousin with a disease or illness or cough and know that I am almost certainly terminal and have yet to send a damn card. Though, after more than a year Linda said they did at least ask how I was, or rather how she was dealing with how I was. The thing is, Linda’s mother is a caregiver, that is how she makes her money. So why is she calling up telling Linda that a) her distant cousin got MS because of a skin infection (wacko!) and b) not wanting or sharing what it is like being a caregiver.
I can almost understand dissing the partner (me) since her mother still won’t acknowledge that we are “together” at her church though EVERYONE knows. And she did say she had lunch with a couple who told HER four years ago that they knew and were okay and how last weekend for the first time since then, she went back out to dinner with them and could “talk about it” (about what? Our wild sex? In your basement? – no, her basement was tick infested and I have a phobia about a tick getting in THERE).
So support and the lack thereof. I don’t know how it is with other people but why is it that “family” is so important and stuff except when it comes to disappearing with a mysterious illness. Or why are there several of the people Linda works with who ask about my health and how the weekend went, and did I have a good day, more than either my parents OR hers combined?
Linda says that when her parents last visited (when I was still well), and she pressed them on, why exactly do you do things and buy things and send cards and do birthdays for other family members and not for me. And her mother said, “Out of sight, out of mind.” Because Linda moved in with me, 14 years ago and moved away from the 100 mile proximity, they haven’t been very present in OUR lives (while they do regularly pressure Linda to pay to come back because person X is having a milestone birthday or a family reunion) – though I did ask Linda tonight, after talking about this, “So I can see they card they sent you for your 30th birthday?” She gave a wry grin. However, she says that now that I am sick, it is more obvious, as if I WAS within driving distance they would HAVE to do something (family obligation) whether they “agree” with our “lifestyle” or not. Which makes it easier to NOT initiate communication or acknowledge that Linda or I might be having a hard time (like sending a card), hence my certainty that someone had died…because they called. And something did…the calf!
As for my parents and relations who did live close by, are they really so upset about my “lifestyle” anymore? Because it seemed that they were more upset that I wanted assurances about wheelchair accessibility for the Xmas meeting than whether Linda and I were still together (the whole, “She always has SOME demand!”). Maybe the whole “lifestyle” thing is just a way to excuse themselves from not connecting, so that they can KNOW or hear that I am sick, I am very sick (though how much is accurate since it travels a weird family grapevine that is probably six to nine months out of date), well, I mean, they can say, “we were never all that close anyway.” I dunno. I guess I can still remember that Linda’s parents were so willing to stick up for her and fly her back to their province when we came “out” and thus got thrown out of our church, if she wanted to leave me. They would pay for her to move and pay for her to stay there and start a new life. So, “taking care of family” does apply, maybe, unless she is in hardship or burning out taking care of me? Or is it that in “taking care of Linda” with that offer they were actually “taking care of themselves” by silencing that scandal and getting Linda back into the family’s hetero fold?
Linda says reading this, “Oh….that’s OLD news.” And I said, “Well, they haven’t offered to fly you back when I die…what does that mean?”
She said, “I dunno.” (then in a sub-whisper) “they don’t want me anymore.”
I don’t know why illness and disability and care giving makes us alone when we so often need that support the most. I did notice that when Linda’s parents thought I had like MS or some other disease, there was offers of building a ramp into their house and that I would be “Welcome” to come visit. But once the “terminal” label was applied, that disappeared.
Linda says that she thinks it is less about my type of disability, but about them not wanting to invite us at all (personally I thought MY version sounded more optimistic), as in, there is no reunion so Linda (and I as her baggage) am not needed. She finished with, “But, I’m not sure if that is how my dad feels.” Her dad is more openly protective of us, and our lives but is one of those men who spends time on the field and is quiet in the house. Also, he was the only person who called, even though it was before 6 a.m., because of some “home remedy” he had read about, and was sure it would work for me. It showed to Linda that HE was thinking about it, and cared, cared enough to call RIGHT AWAY, even if he doesn’t know how to show that feeling in the day to day and week to week support. But then, my feeling is that in a farm culture where you don’t go around sharing how you feel each week, coming up with a SOLUTION is how you show you care.
Our experience is so limited and unique that I don’t know how applicable it is to others. It is just hard to talk to relations and feel like you are on one planet and they are on another (involved in the dozen mundane details of relatives lives who live near them: who got a foot fungus, and whose tractor is in the shop). And for me, to remember that, yes, most of my relatives are living only a few miles away or closer and that my care workers fight for me, call up the home care managers for me, care about me and demonstrate it in ways my own “blood” has not or can not.
4 hours ago