Fed up (2020 edition)

I’m so over feeling like this.

I’m currently lying in a hospital bed 1 hour and 40 minutes into my 21st dialysis session. My arm is aching. If I move my arm even slightly the upper needle feels like it’s scratching the inside of my fistula. The upper part of my fistula is very bruised due to a “blow” a couple of weeks ago. As I understand it a blow is where the needle isn’t fully inside the fistula so as the blood is pushed back in it causes the vessel to expand and bruise.

But, this current discomfort is (mostly) not what I’m fed up with. Between sessions I’m experiencing some very odd symptoms. I’m fine if I sit or lie down and don’t move with any level of enthusiasm. When I do, or when I stand up and walk around, my head starts aching and I get slightly disoriented. I get tired very quickly to the point where continuing to hold my head up gets too much and I need to sit down again.

It’s debilitating. I’m not working at the moment because more than a few minutes of concentration is also too much. Even writing this has me taking a break every few minutes, not helped by only being able to use my right hand.

I feel completely useless. The most I’m able to do at the moment is get dressed, wash myself, feed myself, watch films and TV shows, get undressed and sleep, and most of that requires a recovery period afterwards. I occasionally get out and about but only if it doesn’t involve walking very far, where very far is defined as more than a double-digit number of steps followed by somewhere to sit.

I can drive, which is a little bizarre to me.after three weeks of not driving I tentative, tried it last Sunday and was surprised when I had no negative effects. I drove all the way to my parents’ place which is about 20 miles away, and it was the activities once there that made me feel exhausted rather than the drive as I had expected. Driving back a few hours later was also no issue.

This makes no sense to me. Surely driving is a pretty physical activity so I would expect it to be similar to walking but apparently not. This will have a better test when I drive to Derby next Sunday so we’ll see how that goes.

It does suggest that it’s related to the effort it takes to hold my body up. I know that standing is a far more intensive workout than sitting or lying, but to that extent? Apparently, but that doesn’t really help me.

I want to know how to accelerate getting past this stage, and also whether these are expected symptoms from dialysis. The nurses who administer the dialysis don’t seem to be concerned about it, and I was told it would take 6-12 weeks to get used to the procedure so I’m a way off being past the upper end of that range.

The thing that really bothers be is that I’m not seeing any improvement with each passing session.  Maybe I’m too close to it to notice; who knows?!  Maybe it will be as one other patient suggested: I’ll wake up one day and will suddenly be symptom-free. Here’s hoping.

In the meantime I’m wary of trying to push myself too hard. My manager made this point in our Monday morning update call. I said I wanted to try doing a few hours work each day but she shut that down pretty quickly suggesting that I’m better off working on getting used to things. She probably had a point. In the past when I’ve pushed too hard it’s always backfired which is not something I particularly want to happen now.

So I eat, sleep, poop, and Netflix. I’m not really complaining it’s just frustrating when there are things I’d rather be doing but I struggle when I try; I’m not good at being a person of enforced leisure!