Multiple Sclerosis & Me

Carnival Chronicles III – The Final Chapter

My flight back to the US was at noon on Carnival Tuesday. I woke up and was moving slowly – I had reached home only a few hours before so I wasn’t ready to wake up but “all good things must come to an end” so I got ready. By the time it was time to leave for the airport I was fine. Boarded my flight without incident and headed back to reality. I remember feeling a little out of sorts but chalked it up to being tired and I think I slept most of the 3.5 hours. About 45 mins before it was time to land, I pulled out my immigration form to complete it. uhm…uh oh! I was having an extremely hard time holding the pen and writing. What the?!? The more I “wrote”, the worse my handwriting got. Eventually I gave up because had I continued the immigration people woulda told me, “eh eh…you go right back where u came from!” I took a deep breath and asked the chick next to me to complete it for me. She was happy to oblige but all the while, I kept apologising because I really felt bad and couldn’t believe it had come to that.

I’m usually the first to board a plane and last to leave. Now because I ask for an aisle chair, they would normally bring it for both the departure and arrival airports but as I mentioned in my last post, I usually tell them not to bother when I land. Also, most times I don’t ask to be transferred to and from my window seat, I’ll just shuffle the 2,3 steps across the other seats to the aisle. That day when we landed, at first, I could not move (literally). I couldn’t do shit…could barely unbuckle my seatbelt. That’s when I realised that I wasn’t feeling well and appeared to be getting sick. The fellas arrived with the chair and I still hadn’t moved – except to finally unbuckle the belt. They had to transfer me from my seat over to the aisle chair. I just couldn’t get up to walk over. I went as far as to ask the guys to transfer me to SS – I just didn’t trust that I could get on. Shit!!! What fresh hell was this? I was in Fort Lauderdale…I still had another flight to catch 3 hrs later to get back to Atlanta…uh oh. I had to go thru immigration, get my luggage, drive to a completely different terminal, check in, go thru security, get to my gate AND wait three whole hours…the way I was feeling, I knew I wasn’t going to make it on my own.

i asked one of the guys if he would please go with me all the way to my gate cuz I wasn’t feeling well (see, they automatically help if u’re in one of their chairs but because I use my scooter, my ass is grass – LOL – what I mean is that I’m independent so the assumption is that I don’t need help). Well I certainly did that day. I’ve learned that people are generally nice…I’ve never asked for help and received a “no” for an answer…guy helped me with my luggage and walked with me all the way to my next gate. I cannot begin to explain how grateful I was. If only I could have curled up and slept while he waited for boarding time. Finally, after what felt like days, I was back in ATL. Atlanta airport is 5000x busier than Fort Lauderdale so in that airport, I was actually rolling with someone who was pushing a passenger in a chair. By then, I could barely lift my left arm (my problem side) to work the controls of SS – I actually had to use the right to stretch the left to reach the handle. And steering? Especially around corners? It was embarrassing!!! I kept running into doors and all kinda things cuz I just didn’t have the strength. At one point, I actually said to them, “listen. I drive this like a pro normally but I’m not well right now so please bear with me.” It was one of the few times that I actually asked G to come inside the airport to meet me.

Turns out that I’d come down with the cold – just the common cold but here’s the thing about my contracting the common cold (with my already compromised immune system) – my body has to fight (however many more times) harder than a well person and all my “MS Issues” kick into overdrive, so essentially…it COMPLETELY KNOCKS ME DOWN!!! I couldn’t do anything for myself. I actually had to have someone with me 24/7 for the following week and a half. I was supposed to go to work the Thursday and Friday after I came back. I didn’t…not until Monday, and even then I wasn’t completely healed. It was horrible; I wouldn’t wish my experience on my worst enemy.

Was going home for Carnival worth it? Hell yeah!
What did the whole experience teach me? Next time, I will stay home for at least a week after. I not rushing rush back…If i’m to get sick, let it be at home!

Allyuh have a great weekend. I have to go say goodbye to a friend who died last week Friday. I loved him…even though he used to call me Bert (LOL – I had a uni-brow in those days). Life is unpredictable and tomorrow is never promised. Live each day like it’s ur last.

Stax

P.S. I’m completely healed and back to my normal self with no lingering effects

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!

Carnival Chronicles II

remember, this was my schedule:

Friday (from bout 4 pm) – PHUKET…it’s Carnival Friday
Friday (whenever after PHUKET) – house lime
Saturday (7pm”ish”) -house lime
Sunday (4am) – Vale breakfast fete
Monday (7pm) – Monday Nite Jammerz night mas
Tuesday (12:30pm) – fly back to the US

I’ve never been embarrassed or self conscious about my walking aides -well maybe that isn’t exactly true, the first few times I had to use my cane it felt weird- but sometimes, especially when I go somewhere for the first time, I feel anxious cuz I never know what I’ll encounter. I was a lil anxious going into Phuket. It was my first time in a Trini Carnival fete – that’s quite different from a party in Atlanta. Anxiety aside, I was with J so I knew that whatever we encountered, it would be alright. We got inside (no line) and everything was a breeze. Not one issue and the venue was flat concrete…perfect!!

We started limin outside but sun was on its way down and the temperature was comfortable. Eventually we moved to the covered area where the party was happening and I was able to manoeuvre the crowd and get to the sidelines without issue. Looking back now, Phuket definitely was my best experience. House lime was no problem…I actually used my walker there so nobody had to deal with hauling the scooter in and out the car. Saturday morning – no recovery needed. 2 down, 3 more to go…

Next stop house lime Saturday. well, I decided to sit that one out because I wanted no problems Sunday morning (next time, don’t think I’ll skip it). J & S picked me up about 4:30am and we were off. Being disabled has its perks. As we rolled up to go in (line long like hell), I was approached by someone who said, “come with me” and we rolled right to the top of the line and into the party. Now this place was some kind of field -all grass and no shelter/covered area. Luckily the grass wasn’t long enuf for SS to get stuck (rolling in grass always makes me nervous) so it was good and we ended up limin on the sidelines on a concrete strip so no issues. Party nice. I saw a lot of people I hadn’t seen in years, drinks was flowing, I ate what I wanted to eat, music and vibes cyah done but, of course, what had to eventually rear its pretty little head? the sun!!! (reminder: MS +heat or sun=disastrous results). well I was good until bout 11/11:30am when I started to feel the energy slowly draining from me and eventually, I could do nothing but sit. I’ve talked about how stubborn I am when it comes to the sun but this time, in my defence, I had nowhere to go. there was no shade anywhere. Besides which, crowd was massive; I really didn’t want to navigate it. I was in rough shape. I cannot really begin to explain just how mash up I was.

What u cyah tell from this picture is that that position I’m in was the only position I had strength to be in. I could barely hold up my head up properly on the way out and as I saw the photographer, I tried to wave but – nothing. u’re also not seeing that J is actually controlling SS (we were driving out at this time). I couldn’t lift my arms to press the controls so he’s walking beside me driving and steering. S actually had to lift me into the car and out when we got home. By that time, I’d cooled down considerably but I was still very weak. it was 3:00pm (Sunday) then…I slept till 6am Monday morning.

I woke up fresh as a daisy Monday and was ready to go on the road for night mas. My only concern for mas was potholes along the route – the sun would have been completely down by the time the band pushed off, so that was of no concern (the only other thing that was nagging in the back of my mind was that I’d have to wake up earlier than I’d want (after being on the road) to go catch a plane but whatever, I can sleep on a plane with ease).

I know it lil blurry but some of the “Monday Nite Jammerz”

I wasn’t alone in the band so I knew that we would figure out whatever we encountered along the way. I had no worries. there was 1 pothole that I went in by mistake that was a little jarring because I was standing and didn’t see it but other than that? no issues. I got home about 3something maybe? I really have no idea…

Woke up the next morning and “Party Done”. Carnival 2017 was over (for me). I’d had a great time and emerged unscathed. it was time to head back to reality. What did I learn from the experience? MS/Schmemess. Next time I adding at least one more fete to the agenda!

Carnival Chronicles I

They rhelly say “never say never” in trute. I was reminded of this post the other day. Lol…well…I went home for Carnival in February. It was a trial and error trip cuz I haven’t done Carnival home since 19howlong and certainly not in my diseased state. I knew I had to take it easy and definitely do my due diligence as far as venues for fetes go because, I’ve mentioned before, I love my country but it’s not always the best place for the handicapped.

From the end of Carnival 2016 I started planning. Playing mas was out for sure (sigh) but I was thinking that I could do J’ouvert (cuz it starts at 4am) and/or Monday night mas. Eventually, after a stern talking to with myself, I gave up on the J’ouvert dream because of the crowd – I just didn’t want to take any chances. Fortunately Monday night mas is trying to make a come back and because of that, right now it’s only one band. It was affordable, all-inclusive and small (only bout 250 people). Also, ASal played last year, had a good time and said it was perfect for me (I knew I could trust her; she knows exactly what I need). I couldn’t ask for more…I signed up.

now for the fetes…which ones to go to? trinidad is hot, scorching hot on some days. I had to choose my fetes wisely – probably a good idea to avoid anything outdoors, some of the venues were not known or changed from previous years and then, would I know anyone who’d been there before? If I did, I’d have to explain as specifically as I could what I needed (not always an easy task – I’m so “high maintenance” now. sigh!) – decisions…decisions. Eventually, I settled on 2. We emailed the organiser of one asking about accessibility (I was familiar with the venue but needed to be sure) and he responded “yes no probs” and I knew someone who’d been to the other venue and it was “Stacey friendly” (apparently) . I crossed my fingers and bought my tickets. Truth be told I really never thought bout whether or not either was outdoors. One was 2-10pm…I figured we’d get there round 5 so the sun would be going down and the other was a breakfast fete – I paid it no mind. There was another that I would have loved to go to but I knew that it was OUT of the question because it’s completely outdoors and runs from 12-6ish so by the end (in fact by 2) I would have been dead, so why waste time on that.

I landed Tuesday night. My schedule was:

I spaced everything out so the ole body would have time to recover between events, if necessary. MS be damned…I was ready!

Tuesday night when I got to the house…READY!

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.

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