Using My Wheelchair All Day long

this was originally posted to my main blog on May 19th, 2022.

I’ve watched many Day in the Life, A Day Wheelchair Challange, and other similarity-themed YouTube videos. Not a single one of them touches on how sore, painful, and hard it is to use a wheelchair that isn’t actually built for your specific frame/person. All the people who have done the challenge who were not disabled only talked about the challenges that they experience, not a single video talked about the after-effects of using the chair for however many hours, or how they felt physically afterward. I know such experience likely wasn’t filmed or if it was it was cut out of the experience as not being relevant to what the author was trying to show.

Which I do understand, but as a new chair user it would have been something that would have been helpful to hear about from others’ personal experiences and the like. I knew that I would be sore afterward, but I wasn’t expecting it to be at this level of discomfort and pain, not to mention fatigue.

Not a single video expressed how hard it is to push yourself along uneven pavement/ground, or how to keep yourself from running into the road on said uneven pavement – this is something that I have trying to figure out how to do and the strength it takes to just keep the chair rolling straight without it rolling into the road or the grass is more consistent strength then I actually was expecting it to take out of me.

Then take in the countdowns for the traffic lights, OMG that was very frustrating as I would start out as soon as the hand-turned in my favor to start rolling, and before I was even halfway across the countdown would be almost over leaving me still crossing when it changed! That was super frustrating, to say the least – big time since it was on a very busy street (Finch Ave). Add in that the road surfaces were very uneven and caught my front casters more than once almost tipping me out of my chair didn’t help matters.

Now I have used my chair for a few hours here and a few hours there, but Wednesday, May 18th, 2022 was my first actual day of using it fully outside in public, and I mean more than going to the mall or similar easy rolling surfaces. I had to get to my podiatrist appointment something that I normally would drive to, but since I currently don’t have a working vehicle and I’ve no timeline as to when I still have one, I did what needed to be done and took my chair out for a full spin.

Now I have taken my chair out and about here and there since I got it, but this was my first time having to navigate the Toronto Transit Commission (TTC) system and I was very much NOT prepared for how hard it really would be to navigate it and this is despite watching a few YouTube videos of other wheelchair users telling their experience, their voices didn’t even come close to giving me the breakdown or the truth for how hard it actually is to navigate. It was a very good thing that I had actually left an hour earlier than what the TTC App was telling me that I needed to leave by because if I’d left according to it I would have arrived long after my appointment time and gone all that way for nothing (as they would have canceled the appointment).

Despite putting into the APP that I was a wheelchair user all distances were measured with times for able-bodied people and how fast they can walk on the uneven pavement not to mention it didn’t flag the fact that on my route there were 3 elevators that were out of order meaning extra time to navigate the system just to get down to the next train or up to the surface (something which an able-bodied person wouldn’t have had to worry about – unless they had a stroller to worry about).

I’m thankful for the staff who actually took time to lead me to the alternative exits and who even apologized about the APP not being accurate thus making my travels harder than they should have been. It was nice that they did that, but come on TTC it isn’t up to your employees to say that they are sorry it is up to you as a company to make sure your applications that riders will be using reflect the options open to a traveler. The small disclaimer at the top of the app at the beginning that the route might not reflect current conditions, isn’t helpful at all since it gives me as a disabled user 0 help in what obstacles I might run into in my travels.

I’m also thankful to the bus drivers who actually made sure that I was able to get onto the bus instead of just stopping to let the able-bodied people on and telling me that I was out of luck until the next bus came, etc. So maybe my complaints did help or matter, I don’t know but not a single driver pulled that on me and there was one that I was actually expecting to happen as the bus was very full (packed actually). I was 100% ready for the driver to say that they couldn’t let me on for safety reasons or such (as in there might already have been a chair user don’t here so in truth, not enough space for another user to board).

But that didn’t happen the driver actually told the people in the three seats and everyone standing to get off the bus because I had to get on. I was so embarrassed, to say the least, that she did that. I know the AODA states that as a wheelchair user I get priority seating on the bus, but at the same time, it was shocking that the driver actually got out of her area and made sure people got off and that the way was clear for me to get on.

I thanked her when I was getting off, and she said “not a problem, that is what we are here for. Have a wonderful day” to which I replied that I hoped the rest of her shift went well without issue and rolled off. I am happy that I was able to make the trip to and from my medical appointment on my own without Norman having to go with me, it was a good feeling to do it on my own – but at the same time, I was really missing having him to help push me when I got tired and my pain levels skyrocketed.

I also have to mention that I had Storm with me during all this. This was her very first full outing with me in my chair. She has of course worked around my chair and I have made sure that she is comfortable working around it. But this was her very first time loading onto the bus with my chair she has never before used the wheelchair ramp to get onto the bus. But she handled it like a champ/pro. To watch her you would have thought that she had hours of training to do it and experience. The compliments I heard while riding the bus regarding her was a little surprising. I overheard more than one person point out to something that she was a working dog and a very well and highly trained one at that.

That was kind of strange that some would comment that they thought she was highly trained, well trained that is something I am used to hearing – but the whole highly trained combined with the well trained is a new one that I’ve never heard before. To me, the majority of service dogs are highly trained, granted there are those that need extra work and refinement – but for the most part, all are highly trained to work with their handler and to their specific function in general.

One thing I found with Storm is that she actually wanted to get out and go to work, of late she hasn’t been overly interested in going to work, but for whatever reason, she was chomping at the bit to get to going and work. And she got a good amount of exercise in that she hasn’t gotten in quote sometimes – according to my Fitbit, I took over 20k worth of steps (that’s how much I was using my arms to push myself in my chair). Something that in truth I wasn’t really thinking about when I set out for the day, but it is interesting to see how much it interpreted my pushing to equal in steps. Guess they are right that pushing yourself in a manual chair is equivalent to at least twice the amount of effort as generally walking will take.

The last leg of the trip home is where I got caught up, when it came time to get on the last bus home, this is where I learned a lesson that had me almost in tears. I learned that despite the entrances being accessible in some regards, not all actually are truly accessible – in that they are unattended and quire you to use a Presto Card/Ticket to enter, and though yes they had the presto machines that you can buy a single fiar from – those machines don’t always work.

I actually LOST money to one machine and when I called the number of the machine the bloke on the other than was sorry about my loss of cash but that there was NOTHING that he could do about the loss of cash. Now I am lucky that I had more change on me, but as tight as my travel budget is that extra use means one less trip that I am able to do this month because I now no longer have the funds to do so.

So I can take the bus to go get my medication but I am unable to afford to take the bus back home again, meaning I have to navigate my way along an unsafe street back home after picking up my medication (or have to do it in reverse, roll there and take the bus back home – which I am more inclined to actually do). Getting to my dentist appointment is still possible I still have the cash to get down and back. But that’s it for the month, we won’t be going anywhere else unless it is 100% necessary because I have enough for one more round trip for one person.

Now I do need to get a presto card, and I know that there is a reduced fair fee for those who are low income, but I’m not 100% how to access it as yet. So that is my next thing to look into to see what I need to do to make that happen (though from my understanding it isn’t a big saving, right now any savings is just that savings). There is also a caretaker package that I can sign up for to have whoever comes with me ride for free, which means Norman wouldn’t have to pay for their fair if going with me which would help us both great for traveling, but again it is something that I have to look into to learn more about.

I still need to get my new GP to do the paperwork for Wheeltrans, but seeing how dismissive she is of my medical and the fact that they charge 25.00 per page to fill out I am unsure if I can even afford to have her fill it out since it will be over 100.00 to do so and that’s a steep price since in September they will be introducing the family fees where we can pay a single fee and have as may scripts filled out or letters/notes/paperwork filled out as is needed. Sighs so likely going to have to wait until September to get anything regarding Wheeltans put into place because of their existing policy being uneconomical for us right now.

So overall it was a good experience, but one that I am not looking forwards to having to do again any time soon, because well I’m tired and sore after this one and I know I am going to be more sore and stiff in short order because of overusing my muscles – but at least I can say that for all the system has its problems overall it is workable to getting around if you don’t have access to Wheeltrans, or even if you do and the system isn’t going to be a workable option for you to travel.

Post more as time does happen, take care, everyone!

Medical and my Life

Well, another day more pain and less feeling like I can manage things as they currently are going, unfortunately.

I don’t know what to think right now, I feel like I am drowning in my ability to keep our apartment clean and organized. I feel like we keep falling further and further behind in keeping it maintained and clean.

There is so much that I feel that I need to be able to do, such as putting things away, doing the laundry, dishwashing, etc. Take this Sunday past (yesterday) I tried for the entire day to do some cleaning and organizing around the apartment. I don’t even feel like a made much of a dent into the organizing of things much less the cleaning in general.

I have been told to just so spots and just work on those areas, time and time again – yet I have done that, and guess what that one spot never seems to be cleared up or cleaned up because I keep refilling it after I’ve done a little work on it because I get tired and can’t progress so I just put things back where they were and it starts over again.

At least the laundry did get done, though granted Norman had to do it for me because I couldn’t unload the washing into the Dryer or unload the Dryer so had to have him work to do it for me. But I did fold and put away what was brought into the bedroom so that is saying something at least. I have also unloaded and loaded the dishwasher so that again is something, it just doesn’t feel like it is enough of anything because of how much still needs to be done around the apartment itself in general.

When does it feel like it is enough, and when does it feel like I am not behind in doing what needs to be done? When will I feel like I am able to maintain things instead of feeling like I’m failing and falling further and further behind?

Now add in the higher level of pain that I am now in, that I can’t seem to lower and I’m feeling rather miserable and uncomfortable, to say the least. My lower back is screaming at me that something is wrong, my knees are saying that I shouldn’t have been standing so much and my neck feels like it doesn’t want to support my head – yet laying down isn’t a good option because the pain feels just as bad if not worse when I’m laying down right now that its a toss-up as to which is really the better idea to do.

Sighs, I don’t know what to think or do right now I really don’t – well post more as time does allow for it, take care, everyone!

Video Media and Posting

As many might have noticed I haven’t been doing my regular posting of live streams to my YouTube channel nor have I been doing my daily live streams not even once a week like I had started to try to do, and almost never mind the weekly TikToks that I had started to try to do.

Well the truth of the matter is I just haven’t been feeling it, as my energy levels seem to have tanked and when I try to start to set up a stream to stream I feel like I don’t have it in me to actually do the stream, yet I am able to play my game for several hours yet trying to get my brain to talk or even converse with any of my friends is almost too much for me to do and still play the game at hand – which has been most frustrating, to say the least.

It's not to say that I have always been able to play for hours, there are times when I have been playing and a few minutes after I start playing I have to stop because a Dystonic episode happens and just wipes out what energy I had in reserves or after the episode, I’m just not in the mood to play still that or my pain level goes up making it hard to play comfortably so I have to stop and do something else (like read, watch tv or even actually sleep).

TikTok is its own deal, I have been trying to work on my own series that I would like to get off the ground on it, but I am having my own issues learning the software to do the transitions between charters (it all seems so easy when I see others doing it, yet when I try to do it it is anything but smooth going). So right now the series that I’ve been working on is in a holding pattern as I figure out how to get it filmed properly.

This also means that I’m struggling to just even make basic TikToks because I feel so unmotivated to post anything, big time when I see my mate’s steadily rising numbers when all they post is their VRChat stuff (so ya I am a little jealous of their success but also happy for them at the same time) it makes me feel like I shouldn’t even bother trying to gain a following because I’m not good enough to do so type feeling (which is wrong thinking, but right now hard to shake).

On the upside of things I do finally have another green screen to do streaming with, I just don’t have the setup to hang it up with at the moment so that’s a little bit of its own issue – one that I am hoping we will be able to rectify in short order (since they also would like to do green screen – the set up would be workable for both of us once built/created).

I’m also still working on trying to find a good solution to my laptop issue I finally got the backrest that has proven to be helpful – though it isn’t as helpful as I had hoped as its a little small but it does a decent job in general that I’m not complaining about it. Though I still haven’t fixed my main computer issue, I keep forgetting that I really need to talk to a certain person and see about getting my set up updated – but like a lot of things some things just don’t seem as necessary as other’s when I look at it in terms of what I am doing.

Well, hope everyone is doing well post more as time does allow for it, take care!

 - originally posted to my main blog - YouTube, TikTok, n Twitch | Nyxks Musings (nyxstium.info)

Update on my Health

Well, it has been a while since I last really posted, never mind did an actual video blog (have recorded a couple but not edited or posted them sadly), I keep thinking I need to post, and yet getting around to doing so seems to be so blasted hard to do.

Been feeling a little down for the past little while, big time since I had to have two teeth extracted and found out that I still had an infection in my mouth something like 3 weeks later needing to have an emergency extraction because another tooth broke and come to find out at the base of it the infection was still raging, so ended up losing that tooth also.

I don’t know if the infection has cleared or not as yet, I’ve done three-course of antibiotics so I am hoping that when I see the periodontist Tuesday that the infection is gone and that there are no further issues, but I fear that will not be the case, sadly.

My next appointment is scheduled to be one that will explore to see if I have any cavities, and well I know I do – it will be a minor miracle if I don’t have any. But I hope and pray that I am clear but know how unlikely that is to be. But there is always hope.

Outside of that, saw the new GP who took over from my old one and I am NOT pleased with her at all. I feel let down and left behind not to mention medically gaslighted by her. She pretty much dismissed my level of pain and discomfort not to mention that I actually need pain medication, her answer is Advil and Tylenol are all that is necessary to control the pain. What a bleeping joke, she has no freaking clue what type of pain Dystonia and Porphyra cause never mind Osteoarthritis and Disk Degeneration.

I have read time and time again the dismissal people have posted online about their own doc and I was counting my blessings that I had a doc who listened and treated me, but now I am in the same state as them and I am like them questioning my own existence.

I feel very much let down by my previous medical provider, I feel she failed me. I know she likely went through hockey sticks during the pandemic and being a palliative care doctor likely was even harder on her than being a general GP so I don’t blame her for needing to move on and away – but I still feel like she could have found a better doctor to take over her practice (then again it is very much possible that she was scrapping the bottom of the barrel to even find a physician looking to take on a private practice vs going into a clinic setting.

So feeling like I have been virtually dismissed bu her words, I am going to be trying my best to fill the gap and get what I need to be done regardless of is she likes it or not and if it means finding another who will take me seriously and is a better fit then so be it, some doctors do not deserve to have a serious private when they don’t listen to those who actually live with conditions that are outside of their experience.

Sighs, like many, know finding a doctor who can treat one’s condition or conditions isn’t easy big time when it is a condition that has very few treating specialists in the field who can treat it. That is what I am facing trying to get into seeing the needed specialists when getting a referral to them is going to be an upwards battle as when I asked to see a movement disorders specialist or the local clinic (which requires a referral) I was refused, she said that my existing specialist needed to do the referral – funny thing is I only have my endocrinologist and no other specialist treating me and my endocrinologist said he can’t refer me to such because it is outside of his area and that my GP needed to be the one to do it (anyone for a circle that just goes round and round and round?)

Also to add to the insult the fee’s that we had been told would be waived, well it’s no longer the case. Every script refill done won’t happen without paying for the script to be written, every note/document that is needed by disability will be charged at 20.00 per page, and in short, there is no medical care that I will get outside of basic OHIP covered stuff from this new GP unless I can pay the fees for it to happen, so no more 30 min appointments just 5 to 10 minutes max (as ohip doesn’t cover more then 10 min apparently) no more then 1 question asked at each appointment so it means NEVER getting proper care because we can’t afford the travel back and forth and she won’t approve medical transport which disability demands she approve if they are to cover it, so there is no bleeping way I can get my appointments covered when she won’t freaking well agree to do so.

Sighs, so yes there is a lot that has happened and is happening that thanks to the pandemic should never have come into place – I shouldn’t have lost the medical support system that I had started to rely on, that or I should never have let myself develop the reliance (but I felt that I had finally found a doc I could trust and who had my back, and as I said now I feel like I have been betrayed).

Well, hope everyone is doing decent and will post more as time does allow for it to happen, take care till then!

Video Games I'm Currently Playing

Well, I have been playing various games, and well guess it is time to either make a regular post about what games I am officially playing that I am going to stream also or at least what games I am playing that might have the potential to be streamed, not sure which it is right now but here goes nothing…

XBOX
Minecraft (Bedrock – Beta Edition)
Farm Together
Sims 4
Cities Skyline (Mayors Edition)
Two Point Hospital (Deluxe Edition)
TT Isle of Man
TT Isle of Man 2
Fishing Planet

WINDOWS
Cities Skylines
Farming World
Fallout Shelter
Big Farm Story
Two Point Hospital
The Sims 4
Software Inc.

MAC
The Sims 4
The Sims 3

OCULUS (can’t stream from)
Beat Saber

ANDROID
Idle Miner
Merge Farm
EverMerge
Fallout Shelter

SWITCH (will not stream from)
Farm Together

Lousing another Tooth

Sighs, this is getting most annoying, to say the least, last month I lost two teeth to infection one upper and one lower, and yesterday I lost yet another one also to infection, and that’s after having been on antibiotics for the better part of a solid month!

The dentist says that I need to get better control of my glucose levels, something that I have been trying to do for the better part of 6 months now! My A1C was 7.1 so it wasn’t that bad all things considered, but still not as low as would be liked (in the high 5s to low 6s).

I am feeling rather defeated when it comes to what is happening, not only has my general health taken a hit during this pandemic but so has the care of my teeth, but the teeth care has been an ongoing issue for a few years now, mostly in regards to getting any care since finding someone willing to work on my teeth has become an issue.

I’ve tried getting into either of the local dental colleges that offer treatment on a sliding scale and got turned down by both due to my various medical conditions – getting told that I am too high risk for them to take on! Like what the fudge, too high risk? bleep!

So as a result I’ve had care issues time and time again, getting what care that I do need when I need it. Even emergency care has been a problem more than once and only gotten resolved when I couldn’t take it any longer and Norman called and got the ball rolling (I call and nothing, he calls and something happens – totally annoying!).

Outside of that, been surviving as best as possible with what we have. Haven’t gotten done as much as I’d to have gotten done, but I’m at least getting some things done – just not as fast as it really needs to be done.

Life Happenings - Ups and Downs of Life

Well, lots have been going on in the world and for whatever reason, I’ve not been feeling very energetic. I have had so many ideas that I want to get done and published via TikTok and YouTube not to mention streaming and everything, but for whatever reason, I haven’t done any of them. I just haven’t been able to get into the right brain set to get it done 🙁 might be a bit of depression that I have gotten into a funk about but it also feels like I don’t have the energy to do some of it.

I don’t know what is going on, reaching out to my GP is almost useless as with the transition going on I don’t have a regular person right now, the GP that I had just gotten slightly before the pandemic started is leaving the practice and has someone taking over from her and well I won’t be seeing the replacement until next month and I can’t get into seeing anyone until this new one takes over, so I am actually feeling like I don’t matter.

She had made me feel like I did matter and that she had my back, then the pandemic struck, and like so many others’s I lost so much medical care that I don’t even know if I’ll be able to regain everything that has been lost over the past two years. I know I won’t regain the doc I had since the one taking over has none of her experience dealing end of life clients. I might not be at that point in life, but much of the treatment and stuff that was happening was similar and it was helpful to a degree for getting the treatment that I needed.

I don’t know how to feel right now, I had the fear that I would lose my GP as the pandemic progressed and I had less and less contact with her, then to get the message that she was leaving made my heart sink to see my fears come true.

Currently, I am trying to figure out what the world is going on with my Dystonia treatment. I had left a message for the neurologist who said that they were going to be putting a request into the Movement Disorders Clinic, but that was back in September of 2021 and NOTHING has yet been done. The neuro hasn’t even gotten back to me about it or the fact that they wanted me to have a few tests to rule out a few other things (like Parkinson’s).

I haven’t heard from anyone and my GP wasn’t kept in the loop. I have no bleeping clue what is going on or if I’m back at square one and being left to go another decade of this (don’t think I can’t do this another decade without help). Sighs, took me two years to see that neurologist and I know the referral for the movement disorder clinic is on average 2 years, which means 2024 might well be the earliest things might be seen (and if I’ve lost this much in just a year, how much more will be lost by then that I won’t be able to regain?)

Maybe there is another way to get into a Dystonia specialist outside of that clinic, but for that I need the Canadian Dystonia Association to give me contact info for such ppl and so far that hasn’t panned out, getting such info (though one did recommend a facility in Hamilton – freaking bleep that is blasted far to travel, I could drive it I think – but driving back I don’t know if I’d have enough spoons/energy to do so and we can’t afford to stay overnight so it just doesn’t seem like a feasible option).

The only thing right now is I am looking forwards to the Abilities Expo that is happening in May 2022, because I might to able to get answers to the wheelchair issues that I have been dealing with since the one I have been dropped off and left. Sighs, they still blasted well insist that I signed off on it being my perm chair when I did nothing of the sort. I was told it was a loner for me to try out and instead I get stuck with something that I told them I can’t lift into my vehicle which defeats the purpose of having it when I can’t use it because I can’t take it with me when I go out! I can’t even push myself in it anymore, I don’t have the arm strength to do so.

I am starting to think that I will have to figure out how to buy a custom chair for myself because there is no way that ADP will cover another chair because of the crap that the twit who stuck me with this one pulled. I am hoping that I am wrong and that maybe one of the vendors will be able to help me, but I’m not counting on it (though I am dreaming it to be the case). It is amazing how people are treated, a friend of mine had gotten great treatment for her medical (same agency just different city) and I have gotten crapped on time and time again. Sighs, it's almost enough to make me feel like as I said at the start – I don’t matter.

Well, post more as time does allow for it, take care, everyone!