Random Things
Posted on
Sep 9, 2024

Random Things

  • Mom’s been having a bit of a fever again, it started about a week after it looked like the COVID-19/whatever it was was over, and has been going on for several days now. Not much, not high fever or anything like that just a bit higher temperature than is normal. She doesn’t feel sick really, just tired. We’re not sure whether she should try and contact health care – the instruction is to stay home and contact if it feels like one can’t manage at home, breathing gets difficult etc. but on the other hand, also that those in high risk group, should be in contact readily? She’s in a high risk group because of her age. I don’t think there’s anything health care can actually do, considering she is not even feeling really sick and doesn’t have symptoms other than a mild fever that responds to paracetamol. And the public health care has been notoriously hard to get hold of for years now and she loathes calling them because of that. She usually goes to queue in the clinic when she has to order labs or has to make an appointment because that’s much more faster and efficient than waiting for them to call back for a day or more. But now she’s supposed to stay home so what to do. Varha finally managed to fix their portal’s private messaging service last week (after 5 months!) so I’m suggesting that to her… it’s for non-urgent things and getting replies can take up to 7 days the last I read in the instructions. But first we have to decide whether she should contact health care or not and she’s always reluctant to do so anyway unless the problem’s been going for a very long time (“maybe it’ll magically go away if I wait long enough”) and crosses some weird line of “enough nuisance” or is more of a life-and-death situation or a fall resulting in a broken hip or something. But really, we’re not sure if she’s even supposed to contact health care or not, no clear instructions anymore…
  • we’ve been having a heat wave the last week or so! Again. In September. I’ve been feeling almost physically ill the whole time it’s been going on now, it just too much after a long hot summer. I was already completely in the phase of “summer’s over for this year and fall’s here and it’s nice again outside” when the heat wave started. Usually it’s around 16 degrees Celsius at this time of year, now it’s been 25-28 degrees Celsius the last week or so 🙁 and even when it doesn’t reach heat wave levels, it’s been over 20 degrees so a lot warmer than it should be in September. Feels like I physically can’t deal with it. Although it’s good in shade unlike in the summer when even in shade it’s unbearable.
  • I’ve been feeling extra tired again for a couple of months now 🙁 The same way I felt before I got iron infusions last year and the year before. My ferritin levels are terribly low again (17 in the last labs; if it’s 30 or less it means serious iron deficiency) but because 99% of doctors won’t admit that low/empty ferritin is a problem, they are again waiting that my hemoglobin goes low enough to give me an iron infusion. Hopefully this time I won’t have to be hospitalized for a day while I’m given red blood cells because they waited too long! For some reason the docs always want to wait and see if the ferritin and hemoglbin drop too low even though they’ve been checking and following my labs for 20+ years and already know they always do! I guess they hope that this time, somehow, by some miracle, it won’t happen. In the meanwhile, my quality of life and ability to function suffers from exhaustion that sleeping won’t help and sleep itself gets difficult too just to mention two big things. I’ve also often wondered how much of my chronic daily headache is actually caused by low ferritin because as long as my ferritin’s been tracked, it’s never been anywhere near the recommended levels but always low or completely empty.
Friday 5 for September 6: Bronze
Posted on
Sep 6, 2024

Friday 5 for September 6: Bronze

Answers to today’s questions over at f.riday5.com

In sociology, the third place refers to the social surroundings separate from the two usual social environments of home (the first place) and the workplace (the second place). Examples of third places include churches, cafes, bars, clubs, libraries, gyms, bookstores, hackerspaces, stoops, parks, and theaters.

Interesting question! I didn’t know this term.

My first place is home and second place is my Mom’s home because that’s the other place I spend time at with any regularity that has meaning. I spend about 90% of my time at home. Because of my chronic pain, symptoms of the various illnesses and lack of energy, I’m not able to do much or for long periods (hours) at a time. My life has become very limited since getting ill in 2008.

1. What is your usual third place these days?

There are long stretches of time that I don’t actually have a third place. When I do, the last 7-8 years it has been something to do with some kind of rehabilitation activity or rehabilitation exploration possibilities.

The providers vary, but it’s always my GP who writes the doctors recommendations that opens those doors to me, and often TE-toimisto (the unemployment office) also uses their connections (link officers to KELA or a written statement) to help open those doors, depending on what I’m applying for. Sometimes it’s been kuntouttava työtoiminta (rehabilitation activity) where my goal has been mostly to try out “working” – not a job, but an activity outside home for 4-5 hours (6-8 hours with commute which in my case a few providers say must be accounted in) and for 1-2 days a week in my case. With very light tasks to do there or even just things like painting or making bracelets for kids using wooden and plastic pearls. So nothing like real work. In my case, it’s been to test how my health in general and migraine in particular handles it when there’s a day that’s more than just being home, doing things at my own pace. Emotionally and mentally it’s always been nice and refreshing but physically exhausting and migraine inducing every day I’ve been there.

The other thing it’s been are various types of rehabilitation explorations – these are multi-discipline (doctor, nurse, psychologist, physiotherapist, social worker and sometimes more) courses, where my health situation is assessed along with my entire life situation, possible future avenues charted and recommendations made. These are either group format, or partially group format and so offer also peer support, even though people usually have different health challenges but we’re more or less in very similar situations. Usually/often the thought is towards back work life, but in my case it’s always ended up that not being possible at this time, and being more rehabilitation and more doctor’s appointments to find out can anything further be done for my chronic migraine and just basicly trying to slowly add more resilience to my health, particularly the migraine by kuntouttava työtoiminta and other ways.

All this because the bureaucracy can’t admit that I’m 1) factually unable to work to support myself despite doctor’s statements and 2) no sane employer will hire a person who has not been able to have a job for 16 years due to many illnesses because if they do hire me and I end up finally getting disability retirement (the likelihood of which is great because having job finally would prove what everyone already knows to the bureaucracy) because they will end up footing the the bill for the said disability retirement – but no new worker.

2. How are your third place needs different today from some other time in your life?

I don’t really have third place needs at this time. And I don’t really remember having them before either! Unless you count my Mom’s Beagle back when she (the dog) was alive – I definitely had to play with the Beagle every week back then!

3. What’s missing from your third places these days?

Ability to regularly enough to spend time in one to have a third place in the first place!

4. What kind of third places do you see yourself never frequenting?

Bars, night clubs, beaches. Just in general places where there are lots of people and a lot of noise, or that are hot and sunny.

5. Which third place in a television series would you most enjoy?

I think maybe Ten Forward on Star Trek TNG. There’s always a nice view out and on the show it’s never too crowded or noisy.

Posted on
Sep 1, 2024

After Many Years, Maybe COVID-19

So… we now think, after 4 years of avoiding it, one of our close family circle has finally had COVID-19! Namely my Mom.

Last weekend she had high-ish fever particularly in the evenings, along with tiredness and feeling off and no appetite, for three days. Then when she woke up early on the morning of the 4th day, she was ridiculously sweaty but the fever had broken and she was, and has been feeling normal ever since! She says the whole thing was weird – no sniffles, coughing, sore throat or anything like that. Just the fever, tiredness, no appetite and feeling off. One of her friends who had a diagnosed COVID-19 a few years ago, said hers was exactly like that too! So we’re pretty sure we’ve had it in our close family circle now finally after many years. Mom’s kind of surprised because she can’t think of where she could have caught it. But anyway. We’re just happy we got through it with just a scare at least this time *knock on wood*

Question of the Day – September 2024
Posted on
Sep 1, 2024

Question of the Day – September 2024

By spiffikins  at https://spiffikins.dreamwidth.org/1251745.html

 

1. How Often Does Your Family Eat Together?

I live alone so I normally eat alone.

I visit my Mom a couple of times a year where we plan it so that I eat with them.

2. Is ‘Be Yourself’ Bad Advice?

It really really depends on the circumstances!

3. What’s Your Comfort Food?

Chocolate. But my real comfort “food” is actually a beverage: Frezza Coco Loco.

4. How Good a Friend Are You?

I’m very good in some aspects (such as (vounteering to) helping whenever I’m asked to help with something) but really bad in others (such as keeping in touch if we don’t see each other every week).

5. Do You Think You’ve Forged Your Lifelong Taste in Music?

It looks like it! I still love all the songs I loved when I was a kid, I’ve just added new ones to the list!

6. How Well Do You Take Criticism?

Pretty well! It might sting for a bit, but I like learning and improving and I like trying to put the criticism into practice. Continue reading Question of the Day – September 2024

Question of the Day – August 2024
Posted on
Aug 29, 2024

Question of the Day – August 2024

By spiffikins  at https://spiffikins.dreamwidth.org/1251745.html 
 All caught up, here’s August questions!

 

1. What Do You Gain From Pursuing Something You Do Really, Really Badly?

I sing very, very badly (I sound like a cat being tortured!) but I it’s pure fun! I never sing where anyone can here me, though.

2. What Would You Be Willing to Wait in a Really Long Line For?

I can’t think of anything…

3. Do You Wish You Could Return to Moments From Your Past?

Not moments, no. But I’d love to be as carefree as I was when I was in school. Didn’t have to worry about anything but doing my home work.

4. What Pranks, Jokes, Hoaxes or Tricks Have You Ever Fallen For or Perpetrated?

Never done any of those, and can’t remember falling for one either. They’ve never been something my family or friends have been into.

5. What Are Your Personal Superstitions?

That if I stop using Period Tracker or it is discontinued, my periods will immediately go completely and totally haywire. Continue reading Question of the Day – August 2024