Long day, bad day
Posted , 12 users are following.
today was one of those days where you wake up and you know it's just going to go on forever. Woke up shaking and it wouldn't stop. Snow made the drive to my daughter's school absolutely horrible, then I had to drive one of my cats to the vet because he apparently believed he was a kitten and not an 11 year old and sprained/pulled a tendon. All of this on a day when I was clearly having a very shaking body day-had to use a cane. Given the schedule, I had to delay my pills in order to drive, which my head did not like (no driving on gabapentin).
Then zoom downtown to the Rheumatologist for my visit. my health has improved since the last visit, but then again, it pretty much had to. The doctor encouraged me to speed up my tapering of prednisone (jumping 10 mg at a time instead of the 5 mg i'm doing currently), but I said I was happy going very slowly, thank you. She reiterated that she'd work with me on my schedule but I could jump if I want to. *sigh* I think she wants me to jump 10 mg lol.
long day, edema in arms and legs, shaking in arms and legs, no chance to take a nap, running around all day. ugh. hate days like today. so glad the day is over. just came here to complain 
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2 likes, 49 replies
Susanne_M_UK LisaCACO
Posted
Having gone back to work, part-time, last week, I'm very conscious that I'm trying to be the person I was before I went on sick leave at the beginning of January, but it's just not so.
Lisa's post made me stop and think how much we are trying to be "normal".
EileenH Susanne_M_UK
Posted
Now it is YOUR turn to expect someone else to give a hand - and believe me, when you have a chronic illness you very quickly find the people who are your real friends! It hurts a bit when people drop you because you have had to change your habits for whatever reason. On the other hand, you do find new ones to replace them.
And however much we may enjoy our job, one certain fact is that if we make ourselves ill trying to do it when we are not able, no-one will put up a memorial saying "she gave her all for us", however much they say it at a retirement "do". No-one is indispensible and six months after you leave most of them won't even remember your name.
Susanne_M_UK EileenH
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Susanne_M_UK LisaCACO
Posted
EileenH Susanne_M_UK
Posted
Garda is my favourite north Italian lake - as much as anything because it is possible to get to the lake as there is a cycle path a lot of the way down the eastern side. Como has too many rich people's villas that stop you parking and walking along the lake and some of Maggiore is the same. Added to which - Garda is only a couple of hours away and the others take far longer to get to!
I'm hoping the weather may play ball at the end of next week for long enough to pop down for a few days of real warmth to start the spring
I just came in off the balcony half an hour ago but the wind was cool.
LisaCACO Susanne_M_UK
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Susanne_M_UK EileenH
Posted
We have been to Lake Garda twice, staying in Limone and love it. We also visited an Austrian type town north of the Lake,, I can't remember the name of it just now, but probably close to you.
This year, we are going to Lake Maggiore for the first time, staying in Stresa. Really looking forward to it.
EileenH Susanne_M_UK
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Susanne_M_UK EileenH
Posted
Glad you liked Stresa. Looks like a lovely town. We are B&B in one of the hotels, as, being vegetarian, we will be able to choose meals that suit us. Lots of interesting places to eat.
Susanne_M_UK LisaCACO
Posted
LisaCACO Susanne_M_UK
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Mrs.Mac-Canada LisaCACO
Posted
Hugs, Diana
julian. LisaCACO
Posted
We have one, 35 year old, car. After use Ali (wife) moves the seat back. I can then get in the car without having to lean over and adjust first. Never in a hurry to get anywhere, that just saps my energy.
A heavy pan at the back of the cooker is "4 times" worse than a light pan at the front of the cooker. Weight and stretching.
It generally hurts if I reach for things. Even if it doesn't hurt, do it enough times and it saps my energy. Much easier to put things down and pick things up than pass them.
An old occ health assessment was "put that book on that high shelf". Easy. "now do it 10 times". I got to about 7 with a huge effort.
Sitting in coffee bar chairs for any length of time is some exquisite form of torture. We didn't anyway. We do it less now. Crowds are noisy and consume mental energy. Not a case of not. But also not limitless. "Pacing" crops up on these pages quite often.
Some people go for the random approach at the supermarket. We visit each shelf once in shortest sequence. A list, so we know when to stop. Pick a trolley that doesn't have wonky wheels. If we miss something leave the trolley and go back for it. Sounds silly. Until I get home and have mental and physical energy left to do other things.
The list means we rarely run out of anything and have to do a quick rush to the shops. Supermarket, fruit and veggie, and meat are less than once per week.
I cut the grass without a catcher (a mulching mower). Catcher is too heavy. If I vacuumed the house I sure as eggs wouldn't wrestle with some of the vacuum designs I've occasionally experienced. Being male I'd probably opt for a robot. Otherwise I'd try a cordless. One with steering. One room at a time, not a whole house.
Even I couldn't convince a 10 year old that vacuuming her own room was in her best interests. Even with a bright yellow fashion item designed to enhance her vacuuming experience.
On-line shopping is much easier than traipsing around shops trying to find things they don't have. We don't have supermarket delivery in our area yet. Rarely do we have to buy anything urgently.
I have a picture of starting the day with a limited amount of energy. And gradually consuming it. One small bit at a time. Until I run out and need a rest. Some days I have more, and it lasts longer. Other days less.
Family got used to "I'm running on empty". A bit like hitting a wall while running a marathon. Without having to even start.
Basically re-arranging my world so my daily energy quota lasts longer. Ergonomics for things I interact with. Not sure what its called with people.
Taking care to find the balance between selfish and essential. After a while it all becomes "normal".
EileenH julian.
Posted
I learned to ignore dust - after a while it ceases to get any thicker. It is very patient, it will always wait until I get the cleaner to drop by and sort out the worst for me. The kitchen is clean - we haven't had food poisoning yet. If I really can't face cooking - we chose our village on the basis of a shop that sells (almost) EVERYTHING you need, a chemist, butcher, baker and 3 restaurants all within walking distance on the flat.
And we moved to a flat, with a balcony which doesn't have to be mowed. The mountains are my garden and lawn - someone else mows them. The rest of the heavy jobs are done by others - for which we pay a maintenance fee, which is fine.
julian. EileenH
Posted
I probably started the journey early in life when I realised I was fundamentally lazy and if I wanted to do everything I wanted to do I would have to find ways of doing the things I needed to do but didn't want to in much less time.
Time because its just about the only thing I can't go to a shop and buy. And if I don't use it its gone for ever. Shelf life of zero.
What's worse. I don't know how much time I was given (or have).
More generally I was later introduced to "The Goal" (Eliyahu Goldratt), a sort of cult book for manufacturing. A story about the Theory of Constraints. I used it extensively in manufacturing and systems.
All that happened to me when chronic illness (and ageing) hit was the constraint moved from "time in a day" to "energy in a day" - which simply reduced both the available time and what I can do in it.
The theory is quite useful in whatever form. One part is it allowed me a conversation with family that gave them a useful "model" of what was happening to me. Thus, "I'm running out of steam" means we can all adjust and take evasive action. Much better than becoming totally exhausted and ......... there be gremlins.
As for dust. I've never understood the concept of doing something today which will need doing again tomorrow. It seems such a waste. Apart from watching grass grow that is ...
LisaCACO julian.
Posted
the best thing about taking steroids is that my allergies and asthma are under control. For the first time in my life I can let dust bunnies grow. For the past 3 months I have taken advantage of that :D.
it has been interesting to see just how long mom can go without sweeping and vacuuming. In fact, husband is doing the vacuuming tonite of throw rugs upstairs instead of me. Mom is worn out. He even did the cooking tonite. I had to crash. Thank goodness for the weekend.
EileenH LisaCACO
Posted
A few weeks ago he had hand surgery and they kept him in overnight. I took advantage of him being separated from his precious computer desk to have a closer look at the floor in that room. Even by MY standards it was awful - a whole warren of dust bunnies! He denied ever having seen any...
LisaCACO EileenH
Posted