This is rant.
~ * ~
Due to my limitations, just buying something essential for everyday life can be a huge challenge. When I was an able bodied person, just drive to a shop and browse the items, grab whatever I was fancy for, then drive back was nothing I had to think.
I use wheelchair now because I cannot walk much. Wheelchair is not really an advantage, but it somehow allows me to do the absolute essentials. However, I simply cannot purchase things that don’t sit on my lap, fit into a bag hanging between the handles at the back, or slightly heavier so that I need extra energy and strength to push myself with the heavy item. And I move with painfully slow pace… These days, I just don’t go out much simply because I’m not feeling well enough to lift a wheelchair out from car boot or push it to the destination.
Most of the places, the disabled facilities or some sort of support are only designed for “assisted” wheelchair users. For people who use wheelchair because they are frail/sick and has no carer/assistant, there is not many place they can go…
In a perfect world, you get a carer if you become sick. No… In a perfect world, nobody gets sick.
I’m sure there are many people like me out there; severely ill but no support… In a not so perfect world, we don’t exist from the able bodied people’s point of view. Yet, we exist and we need to survive.
To me, slight slope or tiny gap on the floor that nobody really notice are enough to exhaust me to the point I crash eventually. Some people suggested to train muscle strength. But it is not the strength, but the endurance I don’t have. As you know, we cannot train endurance with ME/CFS…
Recently, I was suggested to buy a better heater to improve my lung function during the winter. For a able bodied person, it is not a big deal. He/she can just go to the shop of their choice, pick up the item, and come home.
For a person who cannot do just that, it involves much more efforts, time, and luck. After I checked at all the online shops I could find, I ended up with usual eBay to search the efficient heater. My budget is very limited as well… Almost all second-hand heaters were “pick up only”. It made me stressed out by just wondering if I could drive to the unfamiliar suburb and pick it up without fail.
Then, I found the factory second, which would be delivered to the door. The price including the delivery would be about the same as buying a new one at one of discount outlets. So, I grabbed the opportunity and ordered it.
Something told me that I was getting the delivery today. So I stayed awake to make sure I could move when the courier company delivers it in early morning. (They always comes early in the morning.) And it came.
It was wrapped with excessive packing tape. Unpacking the item was a real effort and exhausting. Finally, I got to see the body of the heater and I put two casters on by following the instruction.
It’s an oil heater, so I let it sit for a while. I thought I should wait the oil inside to settle before I switch it on, something I was told to do with refrigerator.
After an hour or so, I switched it on to test. The light didn’t turn on. My heart sank.
I thought the setting might be wrong. I read the instruction carefully and checked everything including timer. Still no light… I waited for another half an hour just in case it might take some time to warm up.
It was just sitting there silently without any sign of life in it… After all these efforts, I received a broken heater… Emotional breakdown was on its way…
The seller promises that they will pay for the return for the item that is dead on arrival. They said I had email them within 7 days, but they didn’t give me their email address. So I messaged through eBay. I hope they keep their promise. Worst case scenario would be I ended up with broken heater and lost lot of money. The second worst case scenario would be I ended up with no heater and lose half the money as they don’t refund the original delivery expense.
Now, I’m feeling frustrated by another effort I need to put for packing the dead heater and organising a courier. Then, who knows how long I will wait for the replacement.
I’m upset. Nobody realise or care how much energy and efforts I’m putting just to buy a heater. If I have an unlimited energy resource, I wouldn’t upset about it this much. No matter how careful I am with my energy, there’s always something that makes me waste the limited resource.
I’m losing happiness. I’ve been feeling miserable for a while. And I just cannot do anything to make me feel emotionally better at the moment. This is the last thing I needed… (This makes me wait much longer until I finally have enough energy resource to do something I could enjoy.)
I’m hating my life at the moment.
Posted in ME/CFS, Wheelchair
This is rant.
~ * ~
Due to my limitations, just buying something essential for everyday life can be a huge challenge. When I was an able bodied person, just drive to a shop and browse the items, grab whatever I was fancy for, then drive back was nothing I had to think.
I use wheelchair now because I cannot walk much. Wheelchair is not really an advantage, but it somehow allows me to do the absolute essentials. However, I simply cannot purchase things that don’t sit on my lap, fit into a bag hanging between the handles at the back, or slightly heavier so that I need extra energy and strength to push myself with the heavy item. And I move with painfully slow pace… These days, I just don’t go out much simply because I’m not feeling well enough to lift a wheelchair out from car boot or push it to the destination.
Most of the places, the disabled facilities or some sort of support are only designed for “assisted” wheelchair users. For people who use wheelchair because they are frail/sick and has no carer/assistant, there is not many place they can go…
In a perfect world, you get a carer if you become sick. No… In a perfect world, nobody gets sick.
I’m sure there are many people like me out there; severely ill but no support… In a not so perfect world, we don’t exist from the able bodied people’s point of view. Yet, we exist and we need to survive.
To me, slight slope or tiny gap on the floor that nobody really notice are enough to exhaust me to the point I crash eventually. Some people suggested to train muscle strength. But it is not the strength, but the endurance I don’t have. As you know, we cannot train endurance with ME/CFS…
Recently, I was suggested to buy a better heater to improve my lung function during the winter. For a able bodied person, it is not a big deal. He/she can just go to the shop of their choice, pick up the item, and come home.
For a person who cannot do just that, it involves much more efforts, time, and luck. After I checked at all the online shops I could find, I ended up with usual eBay to search the efficient heater. My budget is very limited as well… Almost all second-hand heaters were “pick up only”. It made me stressed out by just wondering if I could drive to the unfamiliar suburb and pick it up without fail.
Then, I found the factory second, which would be delivered to the door. The price including the delivery would be about the same as buying a new one at one of discount outlets. So, I grabbed the opportunity and ordered it.
Something told me that I was getting the delivery today. So I stayed awake to make sure I could move when the courier company delivers it in early morning. (They always comes early in the morning.) And it came.
It was wrapped with excessive packing tape. Unpacking the item was a real effort and exhausting. Finally, I got to see the body of the heater and I put two casters on by following the instruction.
It’s an oil heater, so I let it sit for a while. I thought I should wait the oil inside to settle before I switch it on, something I was told to do with refrigerator.
After an hour or so, I switched it on to test. The light didn’t turn on. My heart sank.
I thought the setting might be wrong. I read the instruction carefully and checked everything including timer. Still no light… I waited for another half an hour just in case it might take some time to warm up.
It was just sitting there silently without any sign of life in it… After all these efforts, I received a broken heater… Emotional breakdown was on its way…
The seller promises that they will pay for the return for the item that is dead on arrival. They said I had email them within 7 days, but they didn’t give me their email address. So I messaged through eBay. I hope they keep their promise. Worst case scenario would be I ended up with broken heater and lost lot of money. The second worst case scenario would be I ended up with no heater and lose half the money as they don’t refund the original delivery expense.
Now, I’m feeling frustrated by another effort I need to put for packing the dead heater and organising a courier. Then, who knows how long I will wait for the replacement.
I’m upset. Nobody realise or care how much energy and efforts I’m putting just to buy a heater. If I have an unlimited energy resource, I wouldn’t upset about it this much. No matter how careful I am with my energy, there’s always something that makes me waste the limited resource.
I’m losing happiness. I’ve been feeling miserable for a while. And I just cannot do anything to make me feel emotionally better at the moment. This is the last thing I needed… (This makes me wait much longer until I finally have enough energy resource to do something I could enjoy.)
I’m hating my life at the moment.
Posted in ME/CFS, Wheelchair