Sarasota!

Hello from sunny Sarasota! I’m here on a little vacation with my family, and it’s lovely here. Definitely nice to get away from the cold, rainy Toronto weather! My sister and I got here yesterday afternoon, after a very early morning, and very little sleep (which my body does not enjoy to say the least) but we made it, with some wheelchair assistance to help me get through the airports, I’m just not good with long lines and all that airport walking, so I always ask for the wheelchair ahead of time when I travel now. After we arrived, we met up with the parents, who have already been here for a few days, and here we are, ready to soak it up!

I’ve never been to this part of Florida before so I didn’t really know what to expect, but so far so good! We’re staying in a condo in an area called Siesta Key, and some of our family friends are staying in the same building. Last night we had a build your own pizza night, and even though I had to excuse myself a bit early to head to bed after the long day, it was nice! Today we’ve been spending the day on the beach, which I was a bit worried about, but there’s a little shaded area and a nice breeze so I’m not getting overheated. This seems to be the right time of year for me to be here!

Tonight we’re going to check out the local drum circle on the main beach, apparently hundreds of people show up and dance and drum away! Then  tomorrow we’re off for massages, and more relaxtion, which is never a bad thing. And neither are views like this

Now that, I could get used to.

M

 

Fatigue

Fatigue is a symptom that a lot of people with MS struggle with at some point. For me it seems to vary. Sometimes it’s worse, sometimes it’s not as bad. Right now, it’s worse. This is one of those symptoms that people have trouble understanding. Fatigue is not the same as feeling sleepy. Fatigue is much more than just something a quick nap will cure. For me, it’s like my mind is half asleep and doesn’t want to work properly, and my body is off hibernating somewhere. It’s hard, and it’s frustrating, and it can leave me an emotional mess at times. There are medications that doctors prescribe for this, but none have helped me yet, and it’s a bit of a guessing game if any will.

I have, for as long as I can remember, had issues with sleep. I’ve always had a hard time falling, and staying asleep, which really doesn’t help my fatigue situation. I never really feel rested when I wake up, but sometimes it’s even worse and I wake up feeling like I haven’t slept in days. Now I don’t know if you have ever actually gone a couple of days without sleeping, but try to imagine what you would feel like if you did. You would probably be pretty grumpy, wouldn’t you? Pretty groggy? Well I feel like that, but my body also just feels heavy, slow and sore, and my head is a foggy mess. It’s like I’m walking through the day in a haze.  Sometimes I have to make myself get out of bed in the morning, though all I want to do is curl up in a ball and sleep the day away. Having sleep issues seperate from this has been making this desire to keep sleeping impossible however, my body has been deciding that it’s time to wake up, even though I’m still exhausted, and not allowing me to get back to sleep. Right now I’ve been laying in bed for the last 2+ hours trying to get back to sleep. Can’t sleep. Can’t get up. So here I am writing this. (And hopefully it makes some sense!)

Anyways, I think I just wanted to write this to explain it as best as I could. It’s hard when no one understands what I mean, or asks me why im so tired, or try to say that they feel that way too. You don’t. It’s different. Thanks for trying to relate, but it’s different. Sometimes people with MS, or other chronic illnesses, just need a little understanding, and to be cut a little slack in this department. Sometimes we might have to cancel plans, or try to get through them anyways but aren’t completely there. Every day is different. It bugs me when people say things like “well you were fine the other day!”. What difference does that make? Yesterday I was tired, and went through with my plans for they day anyways, tried my best to get through it, and today I’m exhausted.  Just writing this is taking everything I have. Every day is different, and unpredictable. Today is t great, but hopefully tomorrow will be better. 

One day at a time. 

M

 

 

Another year older

Yesterday was my 27th birthday. It feels strange to say, not because I think 27 is particularly old, but it just sounds more grown up than I feel. I’ve come to realize that this might just be how it is for everyone now. I’m not sure if anyone ever really feels like an adult, I think we all just try our best to make adult-like decisions… Really we just live in a world full of big babies trying their best to make it work!

I spent a lot of my 26th year of life down in the dumps so to speak. I spent a lot of time worrying about the future, and hoping for some kind of big guesture by the universe to show me the right path in life. That never came, and I think now I see I have to find this for myself. Sometimes I  struggle a bit with staying motivated, but this year I want to try my best to keep moving forward, in spite of all the hard things life has thrown at me. I never want to let this MS beat me! By this time next year, I want to feel like I’ve continued to push myself, and spent the year productively, whatever that ends up being! 

Hoping for a great 27th year, filled with exciting new experiences and positivity! Oh and of course, more traveling :)

M