MS and Coronavirus

Well I had another post ready to go but decided to switch gears for the hour and speak to this a lil bit. In no way am I an expert but as someone living with ms and my experiences over the years, I think that I can speak candidly and share my views from that perspective.

Coronavirus doesn’t appear to be a death sentence; people have been recovering but as someone living with a chronic disease and an already compromised immune system, I DO NOT WANT to contract it at all. I have been trying to avoid the common cold (listen. Not even the flu, just the common cold) like it’s the plague for at least the past 10 years. The last time I got the cold (don’t remember exactly when it was, but I know that it was before 2012), I actually remember thinking that “this is what it must be like to be at death’s door”. It knocked me flat; I could barely function. Fast forward to 2017 after I came back from Carnival in Trinidad and truth be told, I’m not sure what I contracted – it wasn’t a cold – but I got sick and had to hire round the clock nurses to be with me and when that broke the bank, Learls came to Atlanta for a week as I slowly recovered. A nurse practitioner at the MSCA once explained to me in the most basic terms. When we get sick, our immune systems kick in to start fighting that sickness but as a result, whatever ms symptoms/problems we might be dealing with at the time also tend to flare up/act the fool. So when I get sick, I get extremely weak, my limbs get heavy and everything that I normally do takes so much more effort to accomplish that it really does not make sense for me to be alone because, among other things, that could end in disaster.

back in 2015 and 2016, after my 2 rounds of Lemtrada infusions, I had to avoid sickness and sick people like nobody’s business because for at least 3 months immediately following the infusions, my immune system was pretty much non-existent. Here we are in 2020 and once again, avoiding sick people is a must. The biggest problem in my opinion, with Coronavirus is how contagious it appears to be when patients are not even symptomatic – geez, so basically, I don’t even know who to avoid! It helps that I work from home but I’m at the point now where cabin fever is kicking in…the temperatures aren’t bad right now, I may just scoot around the neighbourhood to get out – I should be able to avoid close contact with people by doing so too. I’m not a major worrier/panic-er generally, especially when it involves things over which I have no control, but Coronavirus is concerning and not contracting it is a top priority, although I not trying to go stark staring mad while doing so – I have to find that balance between living and doing things that I enjoy while still protecting myself at the same time. I eh trying to be morbid, but I just don’t know that my recovery from Corona will be like everybody else’s. As it stands, because of the ms, I am already in tune with my body and I can tell very quickly when something is off or just doesn’t seem right so that, I feel, will be critical for me in these uncertain times.

anyway, allyuh stay safe and protect urselves as well as u can. Keep ur fingers on the pulse of things, stay informed and we will get thru this. Check out coronavirus.gov and who.int for up to the minute information, sneeze/cough into ur elbows, avoid touching ur faces and wash those hands!!! this too shall pass…right?

I gone so, Stax

USC III

Well. The $30 I spend on Life Alert monitoring/emergency services is worth it – I have a broken patio door to prove it.

We docked and had to be off the ship by 9am sharp Tuesday morning. So remember what I’d said about the schedule in my last post so allow me. There was a day party Monday from 12-6, limelimelime, a night fete from 9-4, then there was las lap from 4-7. I went to everything although I had to squeeze in a power nap from 1-2 so that I wouldn’t fall off Optimus fus I was beppin. I tell you all that to say that essentially, I’d been up since I woke up Monday morning. Our flight back to Atlanta was 2 or 3 something so ASal and I didn’t have to rush back to the airport to catch our flight. I don’t have to tell u that I was sleeping from the time I boarded and fastened my seat belt; flight was uneventful and I was back in my apartment around 7pm. Now over the years I’ve learned that anytime I go on a hectic trip, I need recovery time. In fact anytime I travel, I usually make sure that I have at least one rest day between reaching home and going back to work. So..we got back on Tuesday and I didn’t go back to work till Friday.

As much fun as the cruise was, I was ecstatic to be home – I could sleep most comfortably in my own bed…I couldn’t wait to get a full night’s sleep! Got ready for bed and lifted my right leg (as I always do) to get into the bed and uhoh, I couldn’t get it all the way up. Try as I might I just couldn’t muster the strength to lift it all the way – I’d been going hard for 4 days, of course my body was tired! Thing is, I HAD to get in right? So I tried a few other techniques and when I thought something worked it hadn’t and I had no choice but to slide off my bed. Deep down I think I knew that if I didn’t have the strength to lift my leg to get on while I was standing up, getting up from the ground at that moment would have been an exercise in futility but I tried anyway and failed each time. It was 9pm. I was tired, frustrated, angry…all those things and sleepy. I had an idea, I could just sleep for a few hours, the body will be rejuvenated and I could try again. I dragged my comforter off my bed, wrapped up in it and went right to sleep.

I think it was about 2am when I woke up and tried again. I won’t bore with the details but it was around 5:30 when I remember feeling totally dejected and having the thought that I don’t want to see myself on the ground (I’d been in the dark all along and the sun was about to come up), that I pressed the Life Alert button. All that time, I’d been telling myself that I could do it, I can get off this ground and I kept trying different ways to get up and each time I failed. I guess it was my pride? I don’t know…in fact when the EMTs got here (in about 5 mins mind u) and asked me why didn’t I get them sooner, there wasn’t much I could say to justify my actions. They picked me up, put me in the bed, covered me up and walked out the door. I’d been on the ground from 9pm to 6am; they were in and out in half hour – what was I thinking??? The only problem that I have to this day, is that I cannot open my patio doors – that’s where they broke in – because for some reason the apartment management company is having issues replacing them.

I’m going home for Carnival soon. This time, I’m staying for 2 weeks. I figured I might as well build in my recovery time at home – why rush back?

My handydandy Life Alert “bling”

USC II

Uber Soca Cruise was 5 days/4 nights of pure PACE!! To give you an idea of just how much there is going on, ASal got the itinerary in 2018 and was looking thru it and said to herself, “oh okay…this is cool. It have rhell thing to do during the time.” and then she continued reading the email only to discover that what she thought was the length of the cruise was actually Day One! You get the drift…and we were on the water sailing for the entire time except for the 1 day that they dock for j’ouvert.There are 2 big themed parties everyday, the after parties, socasize, football tournaments, lime on the Avenue, all kinda thing. Last year, we set sail at 4 pm on Friday, J’ouvert was Sunday morning and it was on Grand Turk in Turks and Caicos. That was actually my first cruise ever and we planned to take advantage of everything we could…the only thing we had to keep up with was our room keycard. I functioned on 3 hours sleep every night except the first night when I made a conscious decision to go and sleep because I’d woken up that morning at 2am to catch a flight. I had planned to go J’ouvert but at some point good sense prevailed and I realised that playing J’ouvert made no sense. It had potential to be hot (and of course it was – it was on a beach, on an island) and by the time I got back on the boat, between the heat and bacchanal that J’ouvert could be, I might have had to skip that night’s party and that was UNACCEPTABLE!

The problem with not playing J’ouvert was that I had no idea what I was going to do when I woke up on Sunday. By the time I left the room, I figured I could start by exploring the ship and see what it had to offer. Well. What I didn’t know was that I was 1 of 2 people who didn’t leave the ship. There was NOTHING happening anywhere; I mean even workers were nowhere to be found. At that point, I figured well, we in Turks and Caicos, I need to at least get off so I can say I was there but lemme get something to eat first. Dining room closed – I had no choice but to disembark, so off I went. As I left the ship, I had to walk across a boardwalk (I tried to ignore Kes belting out Savannah Grass a little ways down where J’ouvert was in full swing) that led into a duty free shop where at the entrance I had to show my ship card. There was a lip at the doorway and as I drove over the scooter stopped. Hmmmm…eh?. I turned it off and turned it back on and it was then that I saw the power gauge at 3/4 full. It was at that moment that it occurred to me that it was Sunday and the last time that I’d charged the thing was Thursday night. Now. Under normal circumstances that would not have been a big deal, but I’d been using it every night! Of course, in the parties themselves, he was off but I had to drive to all of them and everywhere else we went. I cyah lie, not once did I think, when we finally got back to the room “oh. Plug in the scooter”…the only thing on my mind was crawling into bed. And so..there I was with 3/4 tank on a strange island. 3/4 tank…I mean, that cyah be so bad right? By this time, I could eat a horse so I was looking for anywhere that I could eat and I ran into one blasting Bacchanalist. Perfect! Better fete, it had a ramp. Beautiful…I rolled in and told the hostess that I would sit anywhere cuz I was starving and just wanted to eat. She pointed me to a table, I made sure and turned off Optimus, sat down, started looking thru the menu and then I thought, “oh shit! I actually have to pay for this meal – I’m not on the ship!” WTF! All I had on me was…u guessed it…my room keycard. Well. I had no choice but to go back to the room to get a payment instrument. I had to eat meh humble pie and tell the lady that oops, I’ll be right back. Shit. By that time, Optimus had started dipping to the halfway mark – I didn’t know if I should drive at full speed or slowly to conserve the lil power he had. I really doh remember but I think I made it to the ship and back with his only stopping twice – each time I went over the lil lip by the entrance to the store.

now, not only did I have to keep an eye on Optimus’ power, I had to also be mindful of the time. J’ouvert was finishing promptly at 4 and the ship – 6. Whatever power I had or didn’t have had to get me back there for sail time. I made it back to the ship although I dilly-dallied lil bit in a souvenir shop looking for something for my niece but good sense prevailed eventually because turning off and turning on Optimus every time he stopped didn’t make sense; I was pushing my luck. If I remember correctly, by that time he was down to 1/4 or so. I wasn’t worried once I got back on the ship because at least, 1) I was on and 2) I could always put him in manual mode and ask for a push if it came to that. Once I was on, I made a beeline for my room and the plan was to plug him in and not move until he was fully charged. Well, all was good until I got to my floor…at that point, he was stopping every few feet I drove. It so happened that the handicap rooms were on one side of the floor and there were large suites on the other side where a lot of the artistes were staying. As I was “stopping and going” down the hall, I heard voices behind me and the thought I had was “shit!people around” not “great I can get help”. As they came up behind me, I said sheepishly, “it’s okay, allyuh go ahead. I forgot to charge up but I making it” and one of them said, “nah man, yuh sure yuh eh want a push?” I took it…turns out it was Private Ryan and his friend (for the people who don’t know, Prívate Ryan is a well known popular DJ and radio personality in Trinidad). I was pushed right to my room (he actually stopped twice as I was going thru the door) where I was so grateful to be and I plugged in Optimus and really did not move until he was fully charged that night!

I doh ever want to be in that position again…and I have no one to blame but myself.

An after party on the Avenue

Uber Soca Cruise 2019 I /Travelling II

I doh think that words can really do this cruise justice. What the event planners pulled off last year (and I’m sure every year), is nothing short of amazing. My opinion is that every soca & carnival lover needs to experience it at least once. It’s the carnival experience on a cruise ship, the only thing we don’t get is a parade in the streets – but it’s all inclusive, major fetes, performers in each fete, pop up limes, the Avenue and the entire ship is branded “Uber Soca Cruise”…it is a MUST do! As much as I enjoyed it last year, I’m not going again this year though, I’m going home for the real thing in a few weeks. They sent a recap after we came back and if memory serves me correctly, the number of attendees was around 7,500 (split between 2 ships) so u get the picture of how many people were there around boarding time which leads me to the point of this post.

Over the years, I’ve become quite shameless. I ask for help whenever I need it from whomever is around at the time because after I weigh the pros and cons, receiving the help will generally end better. Of late, I’ve noticed that I’ve started playing the “I’m disabled” card more than not, especially if I’m on the phone and I think it might result in a favourable result. Is that a good or bad thing? I dunno, but I do it…and guess what? sometimes it works. I don’t enjoy being disabled; not in the least but I am and I have to deal with it. I eh go lie though, the “best” thing to have to do as a disabled person is travel. If I have to go to a ticket counter in the airport terminal, I usually have my own line and I tend to be the only one in it. I love my TSA security line, even though it could get long-ish sometimes. I love boarding the plane first – that way I can take my time to get situated in my seat without the pressure of everybody else looking at me and waiting (because that is exactly when my left hand will curl into a ball and NOTHING will get done). It does suck that I have to wait for everyone to deplane tho, so I always need to take that into consideration if I have a layover. I always tell my friends that they want to travel with me so that all lines can be skipped. Asal and I did just that to head down to the cruise.

We had to use Uber from Orlando airport to the port and when we pulled up, there was soca blasting in the parking lot and a crowd of people liming, dancing, singing along and enjoying it because they weren’t ready for us as yet. I knew from then that I was going to have a good time – it was surreal hearing soca blasting in the parking lot of a cruise ship port on a random Friday morning in Orlando, FL. Eventually the door opened and we could enter. Well. I wish I had a picture of the line (it was waaaaaay more than the crowd outside, remember there were bout 3,000 on our ship) but…we didn’t have to be concerned because as soon as a port worker saw me, they pointed out my line and we cruised on thru to the top and the security person who was waiting for me. After passing thru security, it was onto Immigration which was actually empty of course, because everyone else was still outside. We handed the lady our passports and such and as she handed them back, she told us that she had to take our pictures. I decided to stand for it and it was at that moment that Asal realised that she didn’t have my walker – it was nowhere! Uh oh…I cannot hold the walker and drive the scooter through the airport (in fact i usually don’t travel with the walker) so she’d been on walker duty. Luckily, she remembered that she’d had it when we went thru security, so the immigration lady went to look for it. Allyuh! I cannot begin to explain the sense of relief I felt, when she eventually returned with walker in hand. I didn’t know what was in store for me in the room, but I was 100% sure that I wasn’t going to be scooting around it – things would have been horrible without the walker.

Did I mention that there were DJs (and soca) in every room, at every step of the process until we boarded? It was amazing! anyhoo…stay tuned…a few more stories to come. I gone so!

White/toga party

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