18th July 2019

18 th July.

Too many things were happening and there was too much to do. I’m trying to write this on the 23rd of July and don’t really remember the day so well. I did leave myself a couple of notes as prompts.

I spent my ‘usable’ hours writing and posting blog posts. I walked Clifford; Emailed a Financial planner; Cooked dinner and washed the dishes.  My partners mother and her husband came over for a visit as they have been away for the last bit of time, so we caught up with them. The rest of the time was resting and making.

I talk about usable hours. I read an article which talked about usable hours a while ago.  The article referred to how many hours a day where you can actually do things as an *unchargeable person.  I think I have between 4 to 6 ‘useable’ hours.  I’d break these useable hours up even further and say I have about 2 hours where I have peak concentration; 2 hours where I can do light physical tasks and the other 2 can vary, sometimes there isn’t that extra two but they are somewhere between the concentration hours and the light physical work.  The rest of the day I am asleep or resting. I do admit that when I rest I am usually sitting in my comfy recliner, crocheting and watching something or maybe listening to something. I do this v e r y  s l o w l y   a lot of the time.

The peak concentration time is used to work on stuff to do with my business. Pay bills or organise things in life, like all the crap I have to get rid of in order to move house next year. Or, should I say all the great costumes I am trying to rehome.  Maybe ‘concentration’ time is used to write these blog posts. Anything where I have to really focus on something (which is often things that most people don’t have to think that hard about). The physical stuff is usually spread through the day. I put dishes in the sink, wash a few and leave them and when I come back into the room to make more tea, I wash more.  The same type of approach is used for all household duties. Some household duties are really hard to do, which means they don’t get done as often as they perhaps need to. Vacuuming is hard work, as is cleaning the bathroom. Usually someone else does these things.

Having a visitor or going out for an appointment will use up all the useable hours for the day.  If I go anywhere at night, it knocks me around so much that it uses up all the useable hours for about a week.   Walking Clifford uses up a couple of useable hours in a day, and probably a couple more a few days later when I get *PEM.

Usually there is about 28 things I’d like to do in a day, but I have to pick 2 to three things a day. Usually one concentration thing. I can’t really read much anymore, so that also makes like difficult. I can only skim read short articles and I can’t read books. Audio books and podcasts are great.

* I prefer to use the term Unchargeable because I feel like the term ‘spoonie’ or spoons is overused. I’ve heard people using ‘spoons’ to describe why they couldn’t get to their third event on the weekend ….’ I ran out of spoons’. The spoon theory was ‘invented’ by a person with Lupus and, well, I just think if you couldn’t get to your third party it’s not about spoons it about energy. Energy that most healthy people have.  Unchargeable is about a battery that has run so flat that you can never fully charge it again. I think this is more relatable to having ME/CFS.

*PEM – Post Exertion Malaise. One of the key indicators of ME/CFS. It’s often described as a crash, or extreme exhaustion that happens a few days after an activity.  For me it’s two days after the event. So two days after I do an activity that pushes my energy envelope, I get body aches and pains, often sore muscles and feel like I can’t move and have to rest and do nothing that requires any energy.

There’s some links below. I fully admit I need to know more about these things, however, it takes a LOT of my energy to research. So I’m learning a little bit at a time. Please be kind to me.

The ‘article’ that I read about Usable hours is here

Here’s someone else’s ideas about unchargeables and spoonies

The original spoon theory info is here

Info on PEM is here

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