Plans for today (2019-2022)

[caseydog]

Having spent 7 years in and out of a wheelchair, and always in it when we were out of the house, i understand but i also know that I'm very very lucky. Hubby and I took opportunities that came our way/we created where many other people would not have done, so whilst those 7 years were incredibly hard, we have no regrets.

But that said whilst I'm out of the wheelchair now and haven't used it since October last year, we don't know that I'll stay out of it for long . There are worrying signs that I may have osteoarthritis in my spine and if that is the case, it is only a matter of time before I'm back in the wheelchair for good.

I know it's exceptionally hard, most places are not set up for wheelchairs even when they believe that they are. It is stupid little things such as

• ramps being too steep for someone in a hand driven wheelchair to independently propel themselves up the slope (and this is true even in hospitals).
• Doorways not being wide enough for the wheelchair to get through without skinning your knuckles in the process.
• Shops putting displays in the middle of isles meaning it is not wide enough for a wheelchair to get through anymore
• Supermarket shelving being too high to reach anything above 1m (and don't try the bottom shelf either) or the veg being at the back of the display so you actually can't reach it in the wheelchair.
• Paying Is a nightmare as well because a lot of pay machines are fixed in place so you can't see the digital display because the contrast doesn't extend to extreme angles.
• Displays in museums for example being at the wrong angle and height for you to read the literature (that's where phones with cameras come in so very useful)
• Doors being too heavy to open in a wheelchair unless you apply to brake which then stops you going through it. Take the brake off and try opening the door and the wheelchair moves target than the door opening!
• Gutters... hate them. Over here the storm drains in the road are steep and the wheelchair gets stuck on them, with the footplate jamming into the ground and getting stuck.

Getting around in a wheelchair despite all the supposedly wheelchair friendly access is only friendly access if you're with someone who can push you, and that's a best case scenario.

I will add that on most places people will help you if you need it, you only have to ask and some see that you need it and help without asking, but I often feel like the person who designed 'it' hasn't ever tried it on a wheelchair and if they had.... it's a compete loss of independence even when you try to still maintain some independence in a wheelchair. For me the wheelchair allowed me to get out independently, but you were then reliant on complete strangers for help because wheelchair access has been designed for older persons needing to be pushed, not for younger persons still trying to maintain some level of independence.

Fingers crossed for you that your heart heals. I know with my nerves (spinal cord) it took 4 or so years and they were a long 4 years.

Get one of these. I have one from my last surgery.

CD

 

[SatNavSaysStraightOn]

Get one of these. I have one from my last surgery.

View attachment 87468

CD

We have an extras long reach one, along with sock thingies and so on... It's just it is at home normally and not in the supermarket.
Thankfully it isn't needed often at the moment. I was just highlighting some of the issues people in wheelchairs face.

 

[Windigo]

Having spent 7 years in and out of a wheelchair, and always in it when we were out of the house, i understand but i also know that I'm very very lucky. Hubby and I took opportunities that came our way/we created where many other people would not have done, so whilst those 7 years were incredibly hard, we have no regrets.

But that said whilst I'm out of the wheelchair now and haven't used it since October last year, we don't know that I'll stay out of it for long . There are worrying signs that I may have osteoarthritis in my spine and if that is the case, it is only a matter of time before I'm back in the wheelchair for good.

I know it's exceptionally hard, most places are not set up for wheelchairs even when they believe that they are. It is stupid little things such as

• ramps being too steep for someone in a hand driven wheelchair to independently propel themselves up the slope (and this is true even in hospitals).
• Doorways not being wide enough for the wheelchair to get through without skinning your knuckles in the process.
• Shops putting displays in the middle of isles meaning it is not wide enough for a wheelchair to get through anymore
• Supermarket shelving being too high to reach anything above 1m (and don't try the bottom shelf either) or the veg being at the back of the display so you actually can't reach it in the wheelchair.
• Paying Is a nightmare as well because a lot of pay machines are fixed in place so you can't see the digital display because the contrast doesn't extend to extreme angles.
• Displays in museums for example being at the wrong angle and height for you to read the literature (that's where phones with cameras come in so very useful)
• Doors being too heavy to open in a wheelchair unless you apply to brake which then stops you going through it. Take the brake off and try opening the door and the wheelchair moves target than the door opening!
• Gutters... hate them. Over here the storm drains in the road are steep and the wheelchair gets stuck on them, with the footplate jamming into the ground and getting stuck.

Getting around in a wheelchair despite all the supposedly wheelchair friendly access is only friendly access if you're with someone who can push you, and that's a best case scenario.

I will add that on most places people will help you if you need it, you only have to ask and some see that you need it and help without asking, but I often feel like the person who designed 'it' hasn't ever tried it on a wheelchair and if they had.... it's a compete loss of independence even when you try to still maintain some independence in a wheelchair. For me the wheelchair allowed me to get out independently, but you were then reliant on complete strangers for help because wheelchair access has been designed for older persons needing to be pushed, not for younger persons still trying to maintain some level of independence.

Fingers crossed for you that your heart heals. I know with my nerves (spinal cord) it took 4 or so years and they were a long 4 years.

Thank you for sharing your experience I am sorry you went through all that for so long, fingers crossed that it will remain temporary for you too

Sounds like Australia has the same kind of accesibility issues there are here, everything that IS designed for wheelchairs ( which is very little) is designed with a caretaker in mind. So mostly it's bye independence. And most stores and restaurants are just unavailable due to entrances being too high or narrow for wheelchairs. NL always scores lowest in accesibility in Western Europe. We might have good healthcare but we have almost nothing for people with serious disabilities outside care homes.

I know it's most likely only temporary for me so I still consider myself blessed, but the first summer after Covid won't give me respite like the rest of my friends. And a new wave is coming so my last chance to go to the festival we always went to in summer is blown. It's on it's last legs so another covid wave will ruin it. I am letting my husband go regardless of if I am able because he deserves some fun too. But I definitely won't have the summer that was planned.

And yes I am still alive and grateful, and I am mentally flexibele so I know I will rise to the challenge. But it's still been a lot to take in recently.

 

[Windigo]

Wow they are fast, they uploaded the results for me to view in my online chart already. I have a deviated nasal septum with a prominent spur and thickening of the mucosal lining. So no idea yet what my ENT will want to do about it, I am sure he will be in touch with me within the next week or so.

"There is mucosal thickening of the maxillary sinuses bilaterally as
well as patchy mucosal thickening of the ethmoid air cells. The
ostiomeatal complexes are within normal limits. There is leftward
nasal septal deviation with a prominent spur. There is mild mucosal
congestion over the nasal septum and turbinates.

IMPRESSION: Bilateral maxillary and ethmoid sinusitis. The
ostiomeatal complexes are patent. Nasal septal deviation and mucosal
thickening in the nasal cavity."

Not sure what it all means but it doesn't sound great?

 

[SatNavSaysStraightOn]

Thank you for sharing your experience I am sorry you went through all that for so long, fingers crossed that it will remain temporary for you too

Sounds like Australia has the same kind of accesibility issues there are here, everything that IS designed for wheelchairs ( which is very little) is designed with a caretaker in mind. So mostly it's bye independence. And most stores and restaurants are just unavailable due to entrances being too high or narrow for wheelchairs. NL always scores lowest in accesibility in Western Europe. We might have good healthcare but we have almost nothing for people with serious disabilities outside care homes.

I know it's most likely only temporary for me so I still consider myself blessed, but the first summer after Covid won't give me respite like the rest of my friends. And a new wave is coming so my last chance to go to the festival we always went to in summer is blown. It's on it's last legs so another covid wave will ruin it. I am letting my husband go regardless of if I am able because he deserves some fun too. But I definitely won't have the summer that was planned.

And yes I am still alive and grateful, and I am mentally flexibele so I know I will rise to the challenge. But it's still been a lot to take in recently.

I was in the chair before we came out from the UK as well, and again, it is all set-up for someone to be escorted or pushed in a wheelchair, not for them to be independent.

Carpets in shops! I forgot that one. Especially the thick pile not the hardwearing type thigh they are not ideal either. <shudders>.

And those horrible trolleys that supposedly clip on to the front of your chair and promptly stop you learning forward to rotate the wheels to move! Grrr

Fingers crossed for you.

I'm talking to my doctor next week to see if I can get some fresh x-rays of my spine to see if anything visible is going on. I don't know if the indent in my spine right now is anything to worry about it if it is the one above is swollen.
I have to confess that things with my spine (Inc neck) scare me because they happen so quickly and go down hill so suddenly that with the previous two events I had no warning and was left paralyzed in one leg overnight with the first and woke up one morning with no use of or strength in either arm with the second.

 

[Windigo]

I was in the chair before we came out to the UK as well, and again, it is all set-up for someone to be escorted or pushed in a wheelchair, not for them to be independent.

Carpets in shops! I forgot that one. Especially the thick pile not the hardwearing type thigh they are not ideal either. <shudders>.

And those horrible trolleys that supposedly clip on to the front of your chair and promptly stop you learning forward to rotate the wheels to move! Grrr

Fingers crossed for you.

I'm talking to my doctor next week to see if I can get some fresh x-rays of my spine to see if anything visible is going on. I don't know if the indent in my spine right now is anything to worry about it if it is the one above is swollen.
I have to confess that things with my spine (Inc neck) scare me because they happen so quickly and go down hill so suddenly that with the previous two events I had no warning and was left paralyzed in one leg overnight with the first and woke up one morning with no use of or strength in either arm with the second.

Again, I understand. If you want to chat about it you're welcome that kind of fear is exactly what has thrown me off the past few days too. Not being able to rely on your body being there for you is HARD.

 

[PabloLerntKochen]

It's sad, that the world isn't constructed for weehlchairs, but we can be optimistic and we have to wait maybe for some decades or even to the next century, until the 1st world is constructed without boundaries.

I can see another problem, the power usage of weehlchairs. When the solar power boom is there, more electric weehlchairs can drive around. We shouldn't forget the poor countries, as it wouldn't be human, to not share new technologies with them.
We already archived a lot, by considering disabled and sick people still as human beings, who can actually work etc. and not as a pile of useless meat.

 

[caseydog]

Thank you for sharing your experience I am sorry you went through all that for so long, fingers crossed that it will remain temporary for you too

Sounds like Australia has the same kind of accesibility issues there are here, everything that IS designed for wheelchairs ( which is very little) is designed with a caretaker in mind. So mostly it's bye independence. And most stores and restaurants are just unavailable due to entrances being too high or narrow for wheelchairs. NL always scores lowest in accesibility in Western Europe. We might have good healthcare but we have almost nothing for people with serious disabilities outside care homes.

I know it's most likely only temporary for me so I still consider myself blessed, but the first summer after Covid won't give me respite like the rest of my friends. And a new wave is coming so my last chance to go to the festival we always went to in summer is blown. It's on it's last legs so another covid wave will ruin it. I am letting my husband go regardless of if I am able because he deserves some fun too. But I definitely won't have the summer that was planned.

And yes I am still alive and grateful, and I am mentally flexibele so I know I will rise to the challenge. But it's still been a lot to take in recently.

We have something here called the Americans with Disabilities Act (ADA) that works quite well. It is easier to be ADA compliant with new buildings than retrofitting old buildings, but 90-percent of buildings in Frisco, where I live, are new.

CD

 

[SatNavSaysStraightOn]

can see another problem, the power usage of weehlchairs. When the solar power boom is there, more electric weehlchairs can drive around

Surprisingly few are actually electric. They cost too much to purchase and are too heavy for most to move around without specialist vehicles , ramps and so on. One problem I found is that people expect you to be paralyzed if you are on a wheelchair and for most people that actually isn't the case.

Many older/less firm people use mobility scooters which run off batteries though.

 

[caseydog]

My primary planned activity is getting my paracentesis done (removal of fluids from the peritoneal cavity. Noting els matters.

Other than that, I need to schedule a plumber to replace my upstairs toilet. That is something I would have done myself five years ago, but not now -- the new one, which is in the back of the Q5 until the plumber gets here, weighs 109 pounds.

CD

 

[Windigo]

We have something here called the Americans with Disabilities Act (ADA) that works quite well. It is easier to be ADA compliant with new buildings than retrofitting old buildings, but 90-percent of buildings in Frisco, where I live, are new.

CD

We have all kinds of acts and regulations, the government just ignores them. They're reprimanded regularly by the EU, but that changes nothing. Our politicians are interested in money, and disabled people usually don't have much of that.

And indeed, most modern buildings are accesible here too, we just don't have many.

 

[JAS_OH1]

Not sure what it all means but it doesn't sound great?

It sounds like surgery is what's next. We shall see.

 

[TastyReuben]

We have all kinds of acts and regulations, the government just ignores them.

The ADA actually has some teeth here, it’s fairly strongly enforced. Depending on who you talk to, it’s either the best thing ever (people with disabilities) or the worst thing ever (business forced to spend $$$$ making their shops accessible).

 

[TastyReuben]

Wow they are fast, they uploaded the results for me to view in my online chart already.

That sounds like a lot of big words, which coming from a doctor, means very little fun and a whole lotta money. I hope when they break that down for you, it'll be an easy thing to get through

And yes, these days, if your doctor has a patient portal, you can nearly always get your results same-day or next-day. MrsT loves that, as she's highly interested (notice I did not say obsessed ) with her health. I usually just wait for the doctor to call me.

 

[Windigo]

Good news overall from the hematologist. I've sent a few of you who've expressed interest a PM with more info. I can recover from this, but first they must exclude that I might have Pulmonary Hypertension as a result from all this. That will be checked. But either way it's unlikely to happen again. So yay!