Inpatient and life choices
I finally had my inpatient stay for Cushing’s Disease. It was pretty brutal. A lot of needles in a lot of veins. And if I never pee in a jug again it’ll be too soon.
As always I can’t remember what I mentioned last time this was relevant. When we came back from St. Barts last time, we brought three giants jugs for 24-hour urine collections. And they sat in our WC for months because we weren’t sure when I could use them. My consultant was trying to get a more local hospital to agree to process them but she was being repeatedly ignored. So they sat there for ages until I was going to have my inpatient stay anyway.
Urine samples can’t sit around forever so I was worried I just wasn’t going to be able to do them, but then I felt like I was having cortisol highs in the 72 hours before my admission, so I managed to use all 3. I imagine these jugs are a lot easier to use for men who can just stick their peen right in the top. For me, not so much. Have to pee into something smaller and then tip it in. Physically very difficult for someone like me with weak muscles and no mobility. Then after I was admitted, they wanted me to do another 24-hour jug. So that was 4 damn days of my life in a row that I couldn’t just sit and pee properly lol.
Being inpatient was lonely, and I cried when my husband had to leave, as I knew I would. The hospital is approx 100 miles away from our house, just knowing he was so far away gave me such a horrible ache in my chest. I was allowed to bring my laptop, but NHS WiFi is a bit slow so chats sometimes took a while to send. And if I wanted to send or a receive a picture from someone? Lol enjoy a 5-minute wait. And yet I could somehow use Netflix ok. I started watching the original CSI again and felt much amusement from the “computer enhance” moments.
I also managed to read an entire book! I haven’t been able to read books properly for a good couple of years, I just haven’t had the focus and concentration, there are like, 6 books I was in the middle of reading. So it’s ironic that at the inpatient stay for the condition that caused this, I was finally able to read another book. I’d like it if Will read it too so we could be on the same page about sorting our lives out, but I’m not sure I should be too hopeful of that lol.
We all know that I’m quite phobic of venepuncture these days, and the stay unavoidably involved a lot of it. I was mostly ok, because I was in a bed and could lie down, and that affects how vasovagal I get about it. There was one time they took sooooo many tubes of blood in one go though, and the guy doing it lifted the head of my bed way too much, so I felt awful. Last time I had a cannula in I had a panic attack, and I had to have one again, but this time I coped with it when I was lying down. I felt a bit queasy whenever I remembered it was there, but it was also nice not having the stabbing pain whenever they needed some blood. Unless of course they wanted the hand or forearm veins, which they did a few times lol. Man, I remember having a hand cannula many years ago, but I forgot how absolutely fucking painful they are. Vein on the front of my forearm too, yeouch. Also, very painful blood thinner injection in my upper arm every night because they were uncomfortable with my lack of mobility.
I’m guessing they got some valuable information out of all that blood, pee, and pain, because my discharge summary says “Diagnosis: Cyclical Cushing syndrome (Confirmed).” This is the 3rd time I’ve got the same diagnosis, and they made such little song and dance about it that I’m worried they’re going to try and wriggle out of treating me again. I’m at the point where I will put up with feeling like crap all the time as long as they can get rid of the weight. I should have proven 3 times over that I didn’t eat myself to this state.
I know for sure I don’t want to do an inpatient stay again. I really shouldn’t have to. They didn’t do venous or sinus sampling while I was there, and it would have been even more awful than all the vein stuff that did happen, but hopefully if they insist on doing it another time, it can just be outpatient, or somewhere more local can do it. It would be nice if they just didn’t do it, lol.
Anyway, I’ve been home for a few days now but I’m so weirdly exhausted. I know it’s normal to be in rough shape after coming out of hospital. Just would be nice to summon some energy from somewhere. Feeling like I might’ve picked up a bug too, which is not surprising because hospitals are the dirtiest fucking places, man. On that note, did you know they now have to swab your ass for MRSA? Last time I was in hospital it was just a groin swab. Now it’s groin, the same brain tickle up the nose as for COVID, and your ass.
I guess this kind of brings me to my next point, because it’s related to me not wanting to go into hospital again.
So as you probably know, I’ve been streaming from our living room, where my computer lives. I’ll have to stop floor-sitting soon because it’s wreaking havoc on my hips, but the room isn’t really suited for having a whole-ass desk in here. Will also doesn’t want my gaming stuff to spill into any more of the room than it has to.
So. I’m considering turned our 3rd bedroom into a streaming room. The 2nd is already Will’s office. But then you might be thinking, where will our baby go?
We’re actually no longer sure about having children. We always just kind of assumed we would, because it’s the done thing. You grow up, you get married, you have children, and the cycle continues. But it’s been weighing on me a lot the last few years. I’m about to turn 35, after which one should apparently not have children, due to increased risk of miscarriage (which I’m already prone to, we had one right before the dog died), stillbirth, chromosomal abnormalities, so on and so forth. I’m sure plenty of people have children after 35 and even after 40, and they’re fine, but I have enough underlying medical issues already, a big one of which has a 50/50 chance of being inherited by my children.
The biggest factor for me is, having already lost a child, I can’t deal with the pain. I can’t look at or discuss other people’s children. So I’m not sure we could have a child without it just being constantly horrible for me.
I’m also just not frankly sure we have the room in our lives, I need a lot of looking after in the first place. I need help doing literally everything. Babies also need help doing literally everything. I would also be in constant fear of fucking something up (I made the mistake of putting a Spanish film called The Coffee Table on Shudder on the other monitor while writing this post, and that’s really just case-in-point).
When I think about whether I’m actively interested in childrearing, the answer is no. It’s not something I passionately want to do. I like the idea of having adult children that are pleasant to talk to, but I’m not really interested in the stages before that.
I just really like being able to do whatever I want, whenever I want. And I can’t always do that, because sometimes I’m stuck in bed. But if I had to look after a baby on those same days I couldn’t leave the bed, or had to go to bed early, or was awake at a stupid time of night?
I love that I have no idea when and where in the school calendar we are at any one time. I like that I don’t have to deal with someone who’s suddenly shat all up the wall. I don’t want to have to go to hospital to have the baby in the first place. We don’t have to do anything that Will and me don’t want to do.
So, it’s about much more than just changing the use of the 3rd bedroom. It’s about what we want for the rest of our lives. We want to staircase on our house and put in an attic room eventually, so we might still have room for a child in the end anyway, but who knows.
So yes, potentially we’ll just be parents to cats and dogs and the occasional tank pet, as well as the sheer number of frogs in our garden.
Lemme slap some recent YouTube and some room concepts up in here.
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