The day-to-day

This is why I have been gone for a while. I was diagnosed with CFS/ME in high school after 2 years of being generally unwell.

I am one of the lucky ones – I am not bedridden. I can carry on a reasonably normal life 90% of the time.

Most days, I can pretend to be a normal person – I work, study, clean my house, go out with friends.

But sometimes, I can’t. I want to do things, but I just do not have the energy. Sometimes, I have the energy but my brain doesn’t come to the party – I have stood in my kitchen and realised that even though I had the theoretical knowledge of how to make coffee, I had no idea in that moment how to actually go about it. I could not remember the process required to get out a coffee mug, boil the kettle, all the steps required just to make a simple cup of coffee.
That was a REALLY scary day – I thank my lucky stars that this has only happened 3 times, ever.

I often have trouble with words – when I get tired, my brain can’t get to the right word quick enough, and so it throws me whatever it can find.
Sometimes I’ll say “closet” instead of “coat”.
Sometimes I’ll say the name of something I can see, rather than what I mean to say.
And sometimes, I can’t even think of the word. I’ll just stand there, and try to mime out the word I want. I still know what I want to say, I just don’t have the words for it.
Occasionally, I’ll be fine with finding the correct words but stringing them into a spoken sentence is beyond me.

This is why I’ve been missing from this blog. I’ve had to count my spoons* and use them for things that let me try to be a normal human being, because I’ve been a little short recently. Emotion saps me of energy (thanks ASD!) and there’s been a lot of that in my life these past few months – and I’m feeling the effects of it now.

I miss blogging. I miss the “normal” life I’ve been able to live for the past 2 years (because I’ve managed my energy and health well). And I know I will be able to get back to that with time, but it’s going to take time. And I’m crazy impatient.

~K

* Visit But You Don’t Look Sick for an explanation of Spoon Theory if you don’t know why I’m talking about spoons

 

Write-off…

This has been a crappy week, physically, mentally and emotionally.

I’ve been feeling “off” all week, and I don’t know if it’s because I’m coming doen with something or whether it’s just CFS popping in for a visit again. So all week I’ve had a bit of a sore throat, and all the usual sore joints and muscles, and then my wisdom teeth decided to make their presence known again. I am tired when I wake up, even though my fitbit says I’ve slept well, and for about 8hrs, and I don’t get less tired as the day goes on.

Mentally, I’ve been distracted. I have had an insane amount of trouble concentrating. I’ve been having trouble with extraneous noise again, any other verbal noise makes it incredibly difficult to focus on and process what I’m supposed to be doing, or on the conversation I’m having at the time. Words aren’t coming when I need them, so I’ve been having trouble with normal conversation – so I just avoid it. I’ve only been to uni one day this week, and my friends were all like “why you so quiet? Stop being so quiet!”.

Emotionally, I am nothing. I don’t feel “down” as such, there’s just nothing there – no happy, no motivation, no angry, just… Blank.

I was doing so well, and here we are again. Not quite back where I started, but not in a good place.

I’ve only been to uni 1 day this week – missing classes started out innocently enough on Monday with the funeral (it didn’t finish in time for me to get back for either lecture). Then on Tuesday, I decided that I would be better off staying home and watching the lectures rather than going to the tute, because what’s the point of the tute if I haven’t seen the lecture yet? Wednesday I went, because we are being assessed in our clinical health assessment skills over this month, and I wanted to give myself every chance to make sure I’ve got eveything right. We also had the A&P lab on Wednesday morning, so I went to that because Chris dropped me at uni and I was already there. Yesterday I only had a tute, and it was going over “nonverbal communication skills” – I decided not to go to that because I just finished my psych degree, and I didn’t feel like going over all that AGAIN. Today, I’m supposed to have my A&P lecture, but I won’t be going. The idea of riding to uni actually scares me, because I know it will only make me more tired and it will make my joints hurt more than they already do. And if I’m more tired than I already am when I get to the lecture, I wouldn’t be able to concentrate anyway, so what is the point in going?

Therefore, I’ve decided to call this week a write-off and hope that the rest helps me feel better enough to deal with the world again next week.

Before anyone asks – yes, I have stuff I can take. I avoid taking it because it interferes with my pill. Therefore, I need to talk to Hubby before I start taking it, because it’s not something that will only affect me.

I haven’t talked to him yet because I was hoping it was a transient blip that would blow over on its own (those happen, and they’re usually over in a couple of days), but since it clearly isn’t, I’ll talk to him when he gets home from work.

~K

I just…

I think I’m going to go hide somewhere. Today has not started well.

Got an email from the real estate of our old place, saying that the cleaner did not do a good enough job, and that APPARENTLY (oh shock!) the grass needs mowing and whipper-snipper-ing again. Wow, so the grass GREW during summer? Who’d have THUNK it? That’s what happens when you say “oh I’m doing the inspection on X date” so we do the garden. Then you don’t actually do the exit inspection until 2 weeks later.

The cleaner is the same one I’ve gotten for the last two places we moved out of, and there’s NEVER been any issues with his work before. There’s only so much you can do when the house is in as crappy condition as that one is/was. Certain parts of it were stained and damaged before we ever moved in, and I noted it all on the entry report. The property manager changed during the time we were there though, and I don’t think the new girl really has a concept of what the house actually LOOKED LIKE when we moved in. I think she thinks that the house looks like it does because of something WE did. Which is a load of shit. We’ve been begged to stay on by every other real estate we’ve been with. They have always said “oh we won’t increase the rent, will that keep you?”, or something similar. We are good tenants, we look after our houses, we don’t whinge about every little thing. We only complain when there is an ACTUAL problem (like oh, mice living in the back of the stove).

All this really just means that we won’t be getting the bond back until at least the 19th of December and that we probably won’t get the whole amount back now, and this is a problem – I have 2 bills due on the 15th that I’d bargained on using the bond money for. Which I have NO IDEA how we’re going to afford to pay without that money. And I was going to use the money to get Hubby a decent birthday/christmas present (his bday is only a couple of days after Christmas), but we probably can’t afford that now. I thought we would finally be in a position where I could actually get him something decent, but apparently not. (For the past 3 or 4 years, he’s gotten a couple of CDs or video games, and new jocks/socks/boxers).

I don’t have the money, time, or mental/emotional capacity to actually deal with this at the moment. I think I need to just go back to bed. I have already gone through an entire box of tissues because I just can’t stop crying and… I just can’t. I just CAN’T. We have no chocolate in the house because I’ve been trying to keep our food bill down, so I haven’t been buying anything “extra” that we don’t need.

I wish that this had all happened last week, when I was actually feeling OK. This week has not been good, all the body aches are back again, I’ve been having trouble concentrating, my coordination is FUCKED, I’m having trouble thinking – all the CFS symptoms are coming back. So this on top of everything else is just too much right now. I hadn’t actually told anyone that I’m feeling worse again, because it didn’t seem to matter until now – all I’m needing to do at home is cleaning and unpacking, which I can do at my own pace and take rests when I need to. I’m going to have to tell Hubby, but I feel so bad about the fact that this keeps happening. He’s always so good about it, but for some reason I always feel like he’s comparing me to what “normal” people are able to do and thinking that I’m not really sick, I’m just lazy. I don’t know whether this is me putting what I’m thinking myself onto him, or whether he actually does feel a little bit like that. Either way, I feel so guilty that I can’t measure up to a “normal” person. I don’t know what to do any more.

~K

 

Bad idea…

The huge amount of walking I did over the weekend seemed a good idea at the time, and I felt pretty good while I was there. I was getting pretty tired by the time we got to Monday, and I had a cracker of a headache and quite a lot of muscle and joint aches… but I put the headache down to possible dehydration, and the tiredness and muscle/joint pain down to sleeping on an airbed that went flat on Sunday night.

I drank 4L of water over the space of the day, took some painkillers, and kept on with it.

I’m thinking that was probably a less than intelligent idea.

I am now exhausted, the muscle aches are still there and I can’t think straight. I have a presentation that is due tomorrow, and I just can’t concentrate well enough to finish the research to complete it.

I feel like an idiot for not realising what the symptoms actually were. For being optimistic enough to think that I might actually have been getting better, that MAYBE I wasn’t going to be dealing with this for the rest of my life. Because I’d been doing pretty well for a while there – I was thinking well, I was getting my uni work done, I was able to keep up with the housework, I was sleeping well. I didn’t feel foggy, I wasn’t feeling tired during the day. I WAS FUNCTIONING LIKE A NORMAL PERSON.

It’s taken me 2 hours to write this, because I keep zoning out. I think I’ll try to sleep again, then have another go at my assignment.

~K