HO!HO!HO!
Here’s hoping that you all get from Santa all that you wish for and more…Enjoy a Trini childhood favourite of mine.
An Insecurity
I don’t think I was ever self conscious of having to use any walking aides, at least I don’t remember ever feeling that way. It took me a while to get used to relying on my cane – I remember this story when I handed a guy the cane to hold for me lol -I had to overcome a psychological hurdle to move from cane to walker and using the scooter has always been a breeze. Feeling self conscious or embarrassed about using any of them? Never. Feeling self conscious or embarrassed about having MS? Nope. That is…until now.
i hate public speaking of any kind. I’m not going to tell what I go thru whenever I have to make a presentation at work or make a speech of any kind but preparation involves developing the speech and practising a few times. Interestingly though, at the end, I’m almost always told that I did a great job/get kudos etc. Additionally, I’ve never really liked to hear my voice on a recording or hear myself speak. There have been times when I’d hear a tremor in my voice and my opinion is that it just makes me sound unsure of myself. Anyhoo. So remember I mentioned going to the support group meeting? The group leader told me that she would have guessed that I have MS had we been talking on the phone because of the tremor in my voice and when I think about it now, that’s moment that I started feeling weird/self conscious about having my wretched disease. Since that day, I’m so aware of what I’m saying, how I’m saying it and how I sound – I just can’t help it.
The other day I was talking to Dr. Pallo and frankly, I couldn’t tell u the last time we spoke. I’m not sure about what exactly MS related we were talking and he said,”is that why ur speech sounds so staccato?” Funny thing about his statement was that I was listening to myself during the conversation and I remember thinking “okay…u sound okay” and soon after, here he came with his observation. “Great” I told him what the lady had said and he pointed out that he probably picked up something because we hadn’t spoken in so long.
Between then and now I remembered what happens to me when I get hot. My voice goes down to the volume just above a whisper…no matter what I do, I cannot speak loudly when I get hot. And. It’s. So. Frigging. Annoying!!! I really cannot begin to explain to you how frustrating it is not being able to speak up. I’ve never actually told Gilbert about it (it happens so infrequently that it’s not top of mind when I see him) but I know it’s the MS because once I cool down, everything goes back to normal. 2 days ago I was scrolling thru my Facebook newsfeed and came upon the article below that, once I opened I was so excited to see. The very first line talks about speech difficulties such as loss of volume – it even has a name, Dysphonia. Who knew? Not this chick…it’s so good to see that it wasn’t in my head.
Who woulda thought that my speech would make me self conscious and not my various walking aides??? These days whether we just limin or I’m having a phone conversation, I think about how I’m coming across and if the other person is wondering what the hell might be going on with me…I just cyah help it.
Ah gone so…Stax
It's Not Easy Being Me
The Trini way to say this is “it eh easy being me nah” smh…I tell u! Any time I have to stay in a hotel by myself, my biggest concern is “will I be able to climb onto/get off of the bed”. The beds tend to be so frigging high that I may not be able to do so. Well, I went down to Florida last weekend and my plan was that I’d ask for a cot to be placed in my room cuz surely I’d be able to use the cot if I couldn’t use the bed (I refused to think about whether or not the cot would be too low and still cause problems). So at check-in, I told the fella my concerns and he told me that because I was in a “roll-in room”, the beds were actually not as high as the normal beds (a roll-in room is one with a flat shower that someone in a chair can easily roll in to bathe. I need that because climbing into a tub will not end well for me). He told me to check it out and if I couldn’t get in the bed, he would gladly send a cot up. I got to the room and wouldn’t u know it, I could get in/out easily – no probs…woohoo! Another of my needs (remember I’m high maintenance now), is a stable chair; there’s just no telling what can happen with my using a chair on wheels to do everything I need to do, so why tempt fate? They brought up a chair for me.
I was in a room with 2 beds and I told them to put the chair between the 2 beds…I was set. The second night I was there, it was time to go and sleep and I started climbing into the bed. I guess I misjudged something but the next thing I knew was that I was falling off the bed – I actually remember the night before saying to myself,”oooh Stacey, yuh kinda close to the edge here. Do not fall off this bed.” And so here I was the next night falling off the damn bed. It was fine…I didn’t hit anything or hurt anywhere so was no problem and I landed on my behind. The easiest way for me to get up from the ground is to be on my stomach and push myself up so all I had to do was flip over and restart the process. Well guess what? Allyuh believe that the blasted chair (that I asked them to bring in for me to make my stay easier) made the space between the beds so small that I didn’t have enuf room to easily flip over to get up – damned if u do, damned if u don’t. I couldn’t believe it…steups (of course I had visions of not being able to get up and all sorts of things). I had to do all kinda “manouvre-ings” to get out that space but I did it. It also didn’t take me as long as it could have but geez man is allahdat i hadda go thru?!?
All good things must come to an end so GHK took me to the airport to fly back. Whenever I fly, I hang my handbag and my carry-on knapsack on the handlebars of my scooter and I hook my luggage on the arm of the scooter and roll it behind me. We pulled up by the curb, I got out and was already sitting on Bumblebee while she got my handbag and knapsack out the car to hang them onto Bumblebee.
Little background here: Soca Scooter’s controls are in front the handlebars (closer to me) so I have gotten in the habit of turning him off whenever we are stopped because it is very easy to hit the controls by mistake and take off unexpectedly (that happens a few times and u learn very quickly to always turn him off). Bumblebee’s controls are behind the handlebars and so his taking off by mistake is less probable so usually, I don’t turn him off (forgive the bad quality of pictures)
…back to Florida.
I guess I was maccoing something because at some point, something triggered somewhere in my brain (actually it might have been GHK’s voice that I swear I was hearing in the distance calling my name) and I realised that I was moving. Waitaminute! What the??? Luckily my reflexes kicked into action (thankfully the MS has left those alone) and I was able to avoid driving off the curb because that’s exactly where I was heading. Thing is, I didn’t understand why the hell I was moving and it actually took me a few more seconds to figure out that maybe I should just turn it off. By the time I’d stopped – luckily minus drama of running over anything or anyone (in the airport on the way down, I’d rolled over a little boy’s foot but he didn’t react so I kept it moving) – I discovered that when she hung the bag over the handlebars, it also went over the controls and, well, Bumblebee was on so off we went! There was a porter standing there watching everything unfold and he must have figured we were crazy because of what happened as well as the fact that of course, after it all ended and everything (and everybody) was okay, we started laughing up a storm.
never a dull moment when I’m involved but then I guess if things ran smoothly, life will be lil boring huh? Hol’ it dong till next week!
It’s Not Easy Being Me
The Trini way to say this is “it eh easy being me nah” smh…I tell u! Any time I have to stay in a hotel by myself, my biggest concern is “will I be able to climb onto/get off of the bed”. The beds tend to be so frigging high that I may not be able to do so. Well, I went down to Florida last weekend and my plan was that I’d ask for a cot to be placed in my room cuz surely I’d be able to use the cot if I couldn’t use the bed (I refused to think about whether or not the cot would be too low and still cause problems). So at check-in, I told the fella my concerns and he told me that because I was in a “roll-in room”, the beds were actually not as high as the normal beds (a roll-in room is one with a flat shower that someone in a chair can easily roll in to bathe. I need that because climbing into a tub will not end well for me). He told me to check it out and if I couldn’t get in the bed, he would gladly send a cot up. I got to the room and wouldn’t u know it, I could get in/out easily – no probs…woohoo! Another of my needs (remember I’m high maintenance now), is a stable chair; there’s just no telling what can happen with my using a chair on wheels to do everything I need to do, so why tempt fate? They brought up a chair for me.
I was in a room with 2 beds and I told them to put the chair between the 2 beds…I was set. The second night I was there, it was time to go and sleep and I started climbing into the bed. I guess I misjudged something but the next thing I knew was that I was falling off the bed – I actually remember the night before saying to myself,”oooh Stacey, yuh kinda close to the edge here. Do not fall off this bed.” And so here I was the next night falling off the damn bed. It was fine…I didn’t hit anything or hurt anywhere so was no problem and I landed on my behind. The easiest way for me to get up from the ground is to be on my stomach and push myself up so all I had to do was flip over and restart the process. Well guess what? Allyuh believe that the blasted chair (that I asked them to bring in for me to make my stay easier) made the space between the beds so small that I didn’t have enuf room to easily flip over to get up – damned if u do, damned if u don’t. I couldn’t believe it…steups (of course I had visions of not being able to get up and all sorts of things). I had to do all kinda “manouvre-ings” to get out that space but I did it. It also didn’t take me as long as it could have but geez man is allahdat i hadda go thru?!?
All good things must come to an end so GHK took me to the airport to fly back. Whenever I fly, I hang my handbag and my carry-on knapsack on the handlebars of my scooter and I hook my luggage on the arm of the scooter and roll it behind me. We pulled up by the curb, I got out and was already sitting on Bumblebee while she got my handbag and knapsack out the car to hang them onto Bumblebee.
Little background here: Soca Scooter’s controls are in front the handlebars (closer to me) so I have gotten in the habit of turning him off whenever we are stopped because it is very easy to hit the controls by mistake and take off unexpectedly (that happens a few times and u learn very quickly to always turn him off). Bumblebee’s controls are behind the handlebars and so his taking off by mistake is less probable so usually, I don’t turn him off (forgive the bad quality of pictures)
…back to Florida.
I guess I was maccoing something because at some point, something triggered somewhere in my brain (actually it might have been GHK’s voice that I swear I was hearing in the distance calling my name) and I realised that I was moving. Waitaminute! What the??? Luckily my reflexes kicked into action (thankfully the MS has left those alone) and I was able to avoid driving off the curb because that’s exactly where I was heading. Thing is, I didn’t understand why the hell I was moving and it actually took me a few more seconds to figure out that maybe I should just turn it off. By the time I’d stopped – luckily minus drama of running over anything or anyone (in the airport on the way down, I’d rolled over a little boy’s foot but he didn’t react so I kept it moving) – I discovered that when she hung the bag over the handlebars, it also went over the controls and, well, Bumblebee was on so off we went! There was a porter standing there watching everything unfold and he must have figured we were crazy because of what happened as well as the fact that of course, after it all ended and everything (and everybody) was okay, we started laughing up a storm.
never a dull moment when I’m involved but then I guess if things ran smoothly, life will be lil boring huh? Hol’ it dong till next week!
Happy Turkey Day US Fellas
today is thanksgiving day in the US…for the first time in a long long time, I’m doing nothing. I truly hate this weather and even though one can argue that it’s supposed to be a “nice” day, it’s under 70° and in my book, that’s cold (say what u want bout me). I’m actually waiting patiently to fly to FL in the morning…I wish I could bottle up some of the heat and sunshine while I’m there and bring it back. Steups!!!
anyhoo, yesterday was my MRI. I had to do some rearranging and I couldn’t see Gilbert right after, so I won’t know the results till Dec 19th…in the meantime, I’m hopeful. I still am not experiencing anything new – that’s a lie, the “electric shock down my left leg” that I mentioned before has started back…not as often as before, but it’s happening. One symptom that had stopped after the Lemtrada infusions has also reared its stupid little head but nothing new so that should be an indication of no progression right? Who the hell knows…this is Multiple Sclerosis after all. I thought the MRI was going to last forever cuz I was getting my whole spine AND the brain. Well, it didn’t and I actually was amazed when the tech came and rolled me out the tunnel – I hadn’t even fallen asleep yet! As I was being rolled in though, it occurred to me that I didn’t remember the last time I’d had one done. The machine seemed to be extra loud or maybe my ear plugs weren’t in properly. I’m sure there is a reasonable explanation but I find that for a machine whose one job is taking pictures, it’s too damn loud. It goes thru cycles…
sometimes sounding like a jackhammer, a hammer pounding a nail, a door slamming shut…jes crazy shit. Anyway, so 12/19 I’ll go and hear Gilbert’s verdict.
in other news…I made an adult decision earlier this year that I’m beginning to regret. I decided to go home in July for my high school 30 year reunion – absolutely no regrets there. My regret is that I decided to forgo Carnival 2018…whywhywhy did I do that?!? I just opened an email from the Phuket organisers for next year’s fete and well…SIGH!
making this a short and sweet update; not much else going on in these parts.
hol’ it down.