Category: Real Life

Today I’ve been rather frustrated at being so dependent on other people for most things. Woke up early in pain and as I need help taking medication (too small and fiddly for my hands) I had to wake Johan up. Then I had to wake him up again a few hours later because I needed a drink. I can only get certain things done (such as a wash or teeth brushed) when the care workers are here, and if I’m not well enough at the time they arrive I just have to do without, even if I’m feeling up to it a few hours later. My mealtimes are based around when Johan is able to make me food more than anything, unless I happen to be hungry and able to tolerate food while the care worker is here, and able to say what I want without access to the kitchen to see what we have.

I’m frustrated I can’t keep my room tidy. On one side of my bed you can’t see the floor as it’s covered in blackout sheet, curtain and pillows. Would take me about 2 minutes to pick up and put away if I weren’t stuck in bed. My pill box is missing some boxes so I can’t use it. My bedside table is covered in food wrappers and empty blister packs as they don’t get cleared up unless I’m able to ask the care workers to do it, which unless it’s a very regular worker requires explanations on where the bin bags are (I don’t get told), what exactly to do, how to open a bag without the noise making me ill, and other stuff that means it uses up most of my spoons for the day.

Then there’s the constant open questions. What do I want doing? What do I want to eat? What do I want to drink? Each one makes my brain have a mini explosion, yet I have to figure out what exactly is being asked, what answers are acceptable to give (“I don’t know” is normally unacceptable, even if it’s the truth) and how to respond so I’m understood and don’t make the person asking frustrated. I’ve tried asking for closed questions but that’s beyond most people’s ability (Johan can normally manage it, but some days he can’t and if I say I don’t know he gets anxious).

I want to do things for myself. I don’t want to be dependent on others for everything. I am technically able to get out of bed, but I can only make it as far as the floor and then need someone to help me back into bed. I’ve tried washing myself but doing so means I don’t have enough energy left to eat. There have been days where I’ve only eaten snacks because I’m too tired to work out what else I can eat. I’m losing weight again and don’t really know what to do about it, as I’m dependent on others to get the medication that lets me keep food down and maybe even digest it. I keep forgetting to take one of them.

I’m not asking for advice in this post. I know about various solutions to these problems but don’t have the spoons to put them in place right now. We’re still waiting for Johan’s support to happen, along with my hoist and other stuff. I’m normally happy and am definitely glad to be alive but it doesn’t mean I don’t get frustrated sometimes. I wish I were healthy.