Category: Random Thoughts

Things I Learned as I Rolled

Last week was a weird one, hence my posting off schedule. Also, WordPress formatting automatically increases font size of bulleted items so don’t hold that (below) against me.

  • My dislike for bathroom mats is real! Huh? Yes it’s true. This is what happens:

I walk in to use the goddess and my foot, 9X out of 10, will get tied up in whatever mat is there.  I remember one time going in and there were 2 (double ugh! what the hell is the point of 2?!?) thick ones so my sneakers just kinda sank into them and once that happens, the feet eh going anywhere easily. Remember that my left leg/foot is weak, and once the foot gets stuck, I’ll be going nowhere fast. 2 Saturdays ago, I kinda lost my balance lil bit and I was standing on a bathroom mat. It wasn’t plush but the bottom surface was slippery so I started sliding. Had I been by myself, I would have hit the ground. I have NO use for them and I wish that I didn’t have to deal with them ever.

  • Handicapped vs disabled

Apparently it’s not a nice thing to describe somebody as handicapped in this country – they say that it’s offensive. Quite frankly I doh see the big deal. Handicapped is not being able to use part of your body or your mind because it has been damaged or does not work normally.  Disabled is impaired or limited by a physical, mental, cognitive, or developmental condition. Hell. I know that I have problems walking around and need walking aides, cyah play mas or buss a good wine when I ready – I have limitations and my body doesn’t always work normally.  I definitely prefer:

To be spoken “to” vs. spoken “about” as in Person A talking to someone I’m with, “can she walk?” hello! I’m right here…u can ask me
If someone asks “how” they can help or “if” I need help rather than just doing what they assume will help
When people actually listen and follow my instructions when I explain what will actually help

Being referred to as handicapped vs. disabled? cyah bother get my panties in a bunch over that

  • Sometimes figuring out how to get up is actually worse than falling

A fall is never a nice thing but I’ve discovered that sometimes (I guess if it’s a “good” fall) it’s more traumatizing to figure out how to get up than the fall itself (especially if I’m alone). Sometimes, it’ll even take multiple tries before I get it right. one time, I was alone and I had just unlocked my door and buzzed a couple into my building. I fell in the kitchen exactly where they would be entering…I didn’t even try getting up; I just stayed there cuz I figured I’d just use the help to get up.  Of course, as soon as they poked their heads in, I assured them that I was okay because I knew it would have been alarming to push the door and see me on the floor.

  • Not all “accessible” hotel rooms are created equally

I learned that the hard way.  I cannot climb into a tub so I need a shower stall (luckily some hotels actually have showers) or what they refer to as a “roll in” room.  Essentially, I need a room that someone in a chair needs so that I can just shuffle into the shower.  The first time I booked an accessible room, it had bars all over so I could hold on and stabalise if needed but there was a tub and that was of no use to me (the last time I tried to climb into a tub, I’d thought, “hmmm…I can do that – looks doable” – it wasn’t! It didn’t end very well and G2 had to buy a new shower curtain rod). Luckily, the hotel had a roll in room that I was transferred to so the weekend wasn’t shot to hell.

  • Pushing a door is better than pulling

This one is probably obvious but if a door has to be pushed to open, I can use Bumblebee to do the work – no probs.  If the door is to be pulled open, I could find myself in a pickle…unless the handle is on the left side. Did it ever occur to me what side a door handle was on before? Hell no! Now it sucks when the handle is on the right because of the angle at which the door opens and the position of Bumblebee. Writing this, I realise it’s hard to explain but trust me…it’s not an easy feat (nor do I look nice and/or graceful) getting thru a “door to pull” when the handle is on the right.

i’m sure there are some more things but I can’t think of any right now; maybe this post will have a part 2. Anyhoo, I hope allyuh have a good week until we meet again.

Travelling

I’ve been struggling with this post for a while.

Travelling (at times) has changed for me.

I’ve talked about my diminished ability to hold my pee and my visiting the porcelain goddess just because there’s one that I don’t mind using, not necessarily because I have to go.

These days when I’m heading somewhere on a plane, I ask for an aisle chair (the chair they use to roll u thru the plane aisle to take u directly to your row). Usually by the time I get ready at home, get to the airport, go thru security, pee (I always go before boarding a flight) and wait by the gate, I won’t trust myself to walk to my seat, so to avoid any drama, I request the chair. Most times when I reach where I going, I’m relaxed (and want to stretch) so I’ll walk off (also depends on which row I’m in). The other thing I must do is sit in a window seat.  This is what will happen if I don’t. Someone in my row will need to pee and ask me to pass.  I’ll say sure and makes moves to get up for them to pass. It will not happen the first time I try (just cuz that’s how things happen with me) and then the more I try, the less movement will actually occur until I’ll be so embarrassed because eventually said person will need to climb over me to get by (u see,  the more anxious I get, the more my body works against me).  That said, I sit in a window seat so I am never in anyone’s way and the only conversation I may have to have is to ask someone to pass my bag from the overhead bin when it’s time to leave.

Additionally, now that I use a walker, I don’t travel with any walking aides except the scooter – it’s less hassle to rent a walker (yes, that’s a possibility) when I reach where I going or I actually have a walker in some places I go regularly enuf.  Then, what’s the one thing u always have to be prepared for on a plane? Turbulence – it’s a given for most plane rides right?  so…

here we have Stacey’s Recipe for Disaster/Embarrassment:
1 need to pee
1 absence of a walking aide
1 wave of turbulence
Reminders: I will have no cane/walker and I will be sitting in a window seat (which means 2 people will have to move to let me out and walking thru a plane row is not an easy task for me)

…I had to make a tough decision.  I had to figure out how to avoid that recipe at all costs.  the only thing that came to mind was adult pampers.  I’ve talked about MS’s ability to strip away one’s dignity before…I guess this is one way to avoid that.

what is the alternative? not wear them and fall down in the aisles/go on myself and/or the plane seat (I shudder to think).
what’s more embarrassing? wearing Depends or having to tell an air hostess that I had an accident in my seat?

I bit the bullet.  Nowadays if a trip is going to last more than 2 hours, I wear Depends. Getting up and walking to the plane lavatory is out and eh no way in hell that I’ll be holding anything for 2+ hours.

 It sucks and I don’t like it but it’s one of those necessary evils that I must contend with.  I don’t completely trust the things so I actually only drink bare minimum from about 3 days before I have to travel – that way I don’t even need to use them.

anyhoo, it is what it is I guess…just one more way of making adjustments to deal with my wretched disease and not allowing it to get the better of me because then I’ll go nowhere!

MS in the News and Some Ole Talk

So last week the FDA approved a drug that is the first of its kind.  In addition to showing promise in terms of disease progression for sufferers of the relapsing remitting strain of MS (RRMS: relapse when “shit goes crazy” for a while and then things settle down and u go back to normal), promising results were also observed in patients suffering from the primary progressive form (PPMS: things just get progressively worse over time and there’s no “back to normal” period). This is GREAT news for PPMS folk because until now, their options were nil as far as MS specific drugs.  It appears that it will be administered via infusion and supposedly, it’ll be a relatively “safe” drug wrt its side effects.  The drug works by targeting specific cells of the immune system that are thought to be those that damage the myelin sheath and wreak havoc (the “problem” cells if you will).  The medical research field has made progress in leaps and bounds in the past 12 years with respect to available drugs – this is good to see and may be promising for a cure?(a gal can dream).  I remember wanting to say, “lady u mad?” when she told me I had to choose from injecting myself 1,3 or 7 times a week.

Read more in this article

I’ll bet my last dollar that many people have been waiting (patiently or not) for this day so it really is exciting news.

A couple days ago, it occurred to me that I didn’t share one of the most important things about the new scooter, that from now on will be referred to as Bumblebee – of course…how did I take this long to think of that? (it really is a lil transformer…most people can’t believe how he folds up). Anyhoo, it’s actually a most embarrassing feature. When I reverse, he makes the loud (very loud) beeping noise. One day I was in a bank, a quiet bank, with about 7 customers in line – everyone was focused on what they needed to accomplish; u could hear a pin drop – and I was done with my teller transaction and couldn’t just drive away.  “GREAT!” I had to back up…BEEP! BEEP!! BEEP!!! smh..it’s bordering on obnoxious. 
ugh! but I love Bumblebee still 🙂

i also thought I’d share that I originally stopped blogging (on Blogspot) at the end of 2014 because my physical disability was in a downward spiral and it became more depressing to write than not (looking back, I realise that I’d probably been in a lil funk too).  As I came to grips with my worsened state, the writing bug bit me and I really wanted to write again, so I started back last year June.  I stopped again in October last year but that wasn’t my decision – I was forced to stop.

Remember I have issues with my left hand too, so I always use an iPad app to type the majority of the posts and then clean up, add links etc on my laptop before I publish.

Well last year, the Blogspot app I was using kept crashing so I had to make some changes and so, here we are. I say all that to say that I have no plans to stop again.

This time, I’m here to stay.

MS Wellness Expo and…

A few Saturdays ago I went to a wellness expo hosted by the MS society. Was a good use of my time – heard some things I already knew and learned some new things too. There was a neuropsychologist there from Shepherd Center who gave a familiar story about his first MS patient.

  • The guy had a huge yard and he always used to go out on his riding lawnmower and cut his lawn every Saturday morning starting at 10. Enter Multiple Sclerosis…well he simply refused to give in to the MS and every Saturday morning at 10 he would start mowing the lawn. And then every Saturday afternoon by 1, his wife and kids would have to bring him in and lay him down to cool down. He would be of no use to everybody (including himself) for the rest of the weekend. Eventually, of course, he had to stop the madness and make a change. Dr. Rob’s point tho, was that one of the most important things that we need to do to deal with our wretched disease is listen to our bodies and make changes to our lives/lifestyles (even though we may not want to) where we have control. I can’t do anything about the lesions on my brain/spine that affect my walking but I can use a scooter to get around when a lot of walking is involved.
Speaking of scooter…Soca Scooter has given me 4 long good years. He lime, he wine, he fete up a storm, he is my partner in crime at the airport (I have a story bout this for allyuh)…we’ve been thru a lot together but alas, I think that I may need to retire him soon.
  • The seat is busted and oozing sponge in a few places
  • I’ve thrown out one rubber handle and the other looks like it was in a fight with a shark (I have to keep it tho cuz my cup holder won’t work without it! it’s glued together)
  • and I think his chassis is slightly bent

Originally I was going to run him to the ground but I have a vision in my head of my driving along minding my own business somewhere and he just stops…and then what’ll be my story – not a good idea. The one vendor at the expo in which I was interested was a mobility store where I found my next scooter. It’s a folding scooter and so essentially it collapses with a click of a button into something a lot like a carry on piece of luggage. One “problem” with this one is that the top speed is 4mph; Soca Scooter is 5.  The difference between 80 and 81 mph, I may not notice but 4 and 5?…ugh! but clearly I’ll need to get over that fact at some point. Hopefully this one will also be able to lime, wine and take jammin like good ole Soca Scooter.

let the good times roll…

4 to 1

So when I moved into these apartments, I lived on the 4th floor. It was okay because I also parked on 4 so was a lil walk to my apartment. I had an exit plan in the event of an emergency (u know – having to get from 4 to 1 if the elevators were out) although really and truly it had flaws but luckily I never had to test it out. Last year when the lease was up I moved down to the first floor. The move was good for me for a few reasons:

  • This escape route has fewer flaws and will most likely work…plus, I’m already on the ground
  • First has hardwood floors – walking on plush carpet or rugs makes me feel very unstable – the harder the surface, the better for me
  • Speaking of carpet – there is carpet in the bedrooms but it’s not as “plush” as on the 4th floor so…turns out even that was easier to walk on. 
  • I could just drive thru the gate and park (at the time of course) – The drive up and down to 4 in the parking deck was a pain in the ass. I have mentioned here before that the constant stop and go of traffic is pressha on my legs so can u imagine driving either up or downhill around corners, maneuvering the parking deck and all its other cars?!? And then even after I parked, I had a walk to my apartment that sometimes seemed like a mile. 
 
Of course…there’s a story – u knew there had to be at least one.
I asked the management to convert my shower to an accessible one. There originally was a shower door but since they converted it to an accessible, I had to put up a shower curtain. One morning I went  to bathe with a new cake of soap. Don’t ask me exactly what happened or what I was doing but said cake fell out my hand and landed square on my right (trust me this is important) big toe. It hurt like hell and by reflex my right knee bent. Of course everything happened in a split second and before I knew it I was literally falling out the shower. The soap fell on my right toe, my right knee bent and because of the direction I was facing I crashed thru that shower curtain and onto the ground. STEUPS!! All in all though, it was a “good” fall..nowhere was hurt, no bruises and no long lasting effects…didn’t hit my head either (a couple people have threatened to buy me a helmet – heeheehee)

Anyway, was a good move and all’s well that ends well and thank God I still haven’t had to try out that escape route.

Stax

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