1. Slurred speech. Have you ever hard a drunk person trying to talk? Or someone with a mouthful of food trying to pronounce their words? That's what I sound like every day from about lunchtime. People often ask that I repeat myself, or write it down for them to properly understand. Not only that, but I find it a great effort to actually form each word, so more often that not I will rather keep quiet & send emails if I have queries at work, or rather sms my mum than call her. This is my most noticeable symptom, & probably my worst. I used to be a very sociable person & I love chatting to others & getting to know them. Now I rely on either my husband or family to be my buffer & keep the conversation going whilst I sit back & purely listen.
2. Chewing & choking on my food. I LOVE my food! But I cannot remember the last time I was able to properly enjoy a nice steak, or really any piece of meat besides mince! I have to cut my food into tiny pieces, ensure I have enough sauce to help it down & focus on chewing every mouthful. The number of times I have choked on my food & had to literally stick my finger down my throat to pull it back up is unreal. This is why I stay away from lettuce, peas, sweetcorn & the likes. I have had a couple of instances where I have started going blue - because my muscles don't work properly I cannot cough the food back up, nor swallow it down; so it just sits happily in the middle of my throat causing numerous issues! I even had to have the Heimlich maneuver performed on me when I just couldn't get a piece of lettuce down. Again, this usually only happens from about lunch time, but sometimes on my bad days I even battle through breakfast. I have found it much easier to eat soft foods, about an hour after taking my mestinon & nearly always add sauce to ensure I can get it down without making a huge spectacle. Oh & did I mention that I HATE it when people watch me eat?? Oh my! Must be my worst thing ever. I know I look weird when I eat - I toss my head to the right to help get my food down; I sometimes have to prod on the side of my cheek to get the food into the middle of my mouth so it isn't stuck in its own little cave between my teeth & cheek; & I usually take over an hour to finish my dinner. This is amplified when I notice someone watching me, & more often than not I will put my knife & fork down & feign that I am full & don't need to eat any more.
3. Wonky smile. I look at photos of me before I was diagnosed. Photos pre-fifteen. I had a huge smile that reached my eyes, & it was real. Now when I try smile I look like I am either grimacing in pain; forcing it or snarling at the person. I can't help that. My cheeks just won't lift up, my eyes are tired & it just looks weird. I love the days when my face looks 'normal' & I look like I did before MG hit. I will often rather pull a funny face in a photo than have a weird smile captured forever.
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| Exhausted at the end of our wedding - my eyes were battling to stay open & I had to force a smile. |
4. Weak neck. As I sit & write this, I have to keep taking a break to physically hold my neck up with my hands. Lately whenever I bend forward for something my head flops forward to erst on my chest, & does not want to straighten up unless I use my hands to lift it back. I find it easier to lie on my back to talk on the phone, to read a book and so on - just so my neck won't become all floppy & do it's own thing. And I can't even try headbanging to music - my head would stay forward & I would have yo jerk my body around to try fit in!!
5. Walking up stairs. There are 2 flights of stairs to my office at work. Every day I walk these up & down at least 4 times. When I arrive at work, to take a message or parcel to reception, to take paper work to another department, to help with a query, to get a client to sign a document, to go out for lunch, & finally to leave for the day. To a normal person they would seem like nothing, to me (especially by the end of the day) I call it the "walk of doom" - dun dun DUUUUUUUUUN. I get to the top out of breath, exhausted, & have to cling to the banister to pull myself up. There are days I have to physically lift each leg up to make it onto the next step, & when my sister is home she walks behind me & pushes on my bum to help me up - it all started as a joke but when we found it actually helped, she carried on.
6. Carrying parcels. Carrying groceries into the house, boxes of paper at work, or my school bag a couple of years ago... They all equal the same thing. My hands are not terribly strong, especially not my fingers. I have lost count of the number of times I have dropped files coz my hands just couldn't hold on any more. I can feel them getting weaker, but there is nothing I can do except watch my goods go crashing down to the ground. I try help out around the office or at home, but cannot carry the heavier boxes, or do it for as long as everyone else.
7. General facial weakness. By the end of a full days work, I can feel my eyebrows starting to fall down & more weight being placed on my eyelids. Often I have to push them back up again just for my eyes to be properly open - don't want those men at the office to think I am permanently winking at them! As I have said before, this also affects my smile, swallowing & talking. But when my eyes start sitting at 'half mast', then I know it is time to call it a day.
8. Not being able to exercise. The number of times I have been told to 'just exercise, you are just getting lazy by not doing anything'; or 'you need to exercise to strengthen your muscles'. Yes dear, I understand where you are coming from, but us snowflakes have different rules for how our muscles work. If I were to go to gym now & push through a whole class, I would probably end up in the emergency room unable to move or maybe even breathe. And that isn't only because I am unfit, but also because if I overwork my muscles they will give up on me. Or if I overwork my leg muscles, then I have no energy for my arm muscles to work properly to be able to drive my (automatic) car home. On that subject, I am very blessed to have an automatic car as changing gears is no easy feat - I used to have to put all my weight behind my arm to change to third or fifth so now I am lucky that I can focus on getting to my destination safely & just having to steer.
9. Exhaustion. I get tired very easily. A full days work is it for me - no leftover energy to go visit friends or sometimes even cook dinner. I cannot have a night out with my friends & then function normally the next day. I can't spend a day with my friend & her kids then eat dinner with no problems. And this heat in Summer just about kills me! I feel like I am melting & it saps all the energy out of me so quickly. When it is hot outside I have to stay inside our little house, with a fan on & my feet on the cold tile floors. I am not your normal 26 year old, but that's ok! I am a snowflake - an individual in my own right & the strength I have today is because of the battles I have fought & made it through.
10. Writing for long periods of time. We are so lucky now that we can use computers so readily, & do not have to handwrite everything. At school I even got special permission for the education department to do my final exams on a computer, as well as with extra time as my hands do not work well for long periods of time. I have dropped my pen countless times, & sometimes even battle with typing on a keyboard for a full day. My fingers just don't want to listen to me & go off in all sorts of directions or sit like limp rags at the ends of my hands, unable to do anything.
These are my tough times, but God is good. I have faith that I will be healed. And I know that I am strong, because look at what I have overcome. I am fighting a constant battle against a chronic disease. Every day I prepare myself the best I can & go out ready to try my best & do everything I possibly can. My body has sometimes let me down (like the time I wet myself out with my sister & mum because your bladder is a muscle too you know!) but it is still going. And I will not give up! Snowflakes for the win!!
