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.

6 Less Common MS Symptoms

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

 

Strength

Therapy finished last week, I’ll be more consistent once again.

i don’t question “why me?”  Quite frankly I don’t remember when/if I’ve ever asked that question.  The question I really want answered is “why multiple sclerosis?” I really wish I could pinpoint something I did/somewhere I went/something that happened in my past that could explain why I have my wretched disease, but no. No explanations, no answers…sigh. Allyuh tell me how strong I am and how much you admire me because of how I handle things and, I’ve said this before, I’m not putting on a show for that praise, I really do handle things well (at least I try to) – I eh go lie, I sometimes amaze myself at how I handle things.  Well…all that strength came to a crashing halt some Fridays ago.

truth be told, I haven’t had a bad day in a long while, so one can probably argue that it was time I s’pose. It was the week after labour day (sept 4) and it all stemmed from a mix up with the delivery date of one of my medications.  It’s a twice a day tablet that is specifically for ms patients’ walking issues. Every month, I speak to a pharmacy representative and we agree on the delivery date and every month like clockwork, it’s delivered on said date.  Well I’m not sure what happened and it didn’t come as I expected and when I called to find out what was going on, I was told that it was coming 4 days later. That news was no good, I had 2 days of pills left. As I said before, this is a twice a day pill that’s specifically for my walking and one time years ago, I went down to one a day just to see if that dosage could work and I discovered that the pill actually also helped my overall good feelings and 1 daily wasn’t cutting it. So here we are that week and I have 4 pills for four days. Shit! As “luck” would have it, I’d forgotten to take a set of pills sometime that month, so I actually found one more. So for that week, I took one pill a day and I was coping – or so I thought.

that week was leading up to an event that happens annually here in ATL that pits the men in our Trini community against each other to see who “han sweetest” in the kitchen. It’s a competition that’s been run by AuntyP for years and it eventually morphed into a part fund raiser for the MSCA on my behalf. It really brings our little community together and now in these times of social media, all week long I was tagged in comments and pictures and the pekong amongst the competitors was hilarious. That Thursday, in the midst of all the ole talk, a few people were very complimentary of me and reading what was said made me smile – gave me warm and fuzzy feelings, if u will and really lifted me up. Looking back I realised that my funk had started that Thursday afternoon. I really needed those comments right at that time.

the pills are usually delivered to my front door. Don’t u know it, that day UPS left it in the leasing office so I had to get them. The scoots to the office and back were uneventful so I’m not sure what got to me but in that moment when I got back to my apartment and opened the package, all my strength, positivity, “glass half full” energy vanished…shit was just too unfair and I was on the verge of tears. I was angry, I was sad, I was upset, I was despondent, I felt hatred to the MS and I can go on.

It was the middle of the day though…I had to get back to work…

A few hours later, after having spoken to Learls and a few others, I was almost back to normal.

I’m fine these days but MS still sucks!