Maybe one day

I think I need to live in Northern New Zealand. Where the average temperature is around 20 degrees. I think the coldest is 7 degrees and the hottest is 29. Lol. It's tough to be outside. I don't hang out in the heat. It's hard to work in the heat. I need air conditioning and coolness!!  It zaps me. Just like that. Almost with a snap of the fingers the life drains out of me. If I go in a hot tub or have a hot pack on everything goes numb. And not just slightly but entirely!  Thank goodness the feeling comes back!  I hesitate to say bring on winter because other than hockey I hate being frozen too. Too bad it can't be fall all the time. But honestly I'm sick of summer already. The only good thing is I don't have to bundle up. I could handle an ocean though. Where the breeze blows and I can just relax. I've never gone but maybe one day. :).  Maybe one day I'll live in New Zealand. Maybe one day there will be a cure and I can stop dreaming about it.

Love the Broken

Chronic degenerative neurological disorder. Now that's a mouthful! But it's what rolled off my neurologists tongue at my last appointment. It's wonderful to have someone who gets it. It's also a slap in the face to hear it. Appointments are difficult mentally. They are check ups to see how bad you are doing, not to see how good you are. To make sure you are mentally stable as well.  Don't worry I passed that part! Lol They look to see how much you've deteriorated, which is backwards of a regular checkup. Usually if you are sick you go to see if you're better. If your leg is broken you go back to see if it's healed. They aren't as bad as MRI's though. Because those are "the proof in the pudding" (no idea how that saying originated!)  I saw my MRI for the first time at this appointment. Again....it's like a punch in the stomach. Just one more thing to make it all real, but there was an upside. It looked better than I expected. I had envisioned this to be riddled with white spots. But it was quite the opposite. Just a few here and there. Which makes you wonder how something that small can cause that much trouble?  Kind of like a two year old!  So tiny yet can be a terror at times. :).

Even those these days can be rough, I can say that overall I'm happy.  I don't dwell on it as much. Don't get me wrong I still have moments but they are just that...moments. Not on average a long extended period of time. I don't always think about what I can't do. Quite the opposite actually, I tend to think I'm superwoman still. Which can be problematic. But I HATE absolutely HATE being TOLD that I can't do something. I need to figure that out for myself. Call it stubbornness or pride but I need to see it for myself. I can joke about my slurred speech, balance, or my handwriting now. It doesn't bother me. It's who I am. And at times it is funny! Sometimes not exactly funny, more awkward but that's okay. It's okay if you ask to help me write something, or carry something. It's been a humbling thing for me but if this is degenerative and chronic then this is here to stay and it's gonna get worse so the faster I accept my life the easier it will be. The happier I will be. I can't change it. My family can't. My friends can't. So accept it, embrace it and walk along side of it. That "it" being me. I'm going to do the best I can. And it's okay if I need your help.

What does that look like?
Patience. I had to sign a ton of papers at the bank for the new cafe. Not a simple task. Don't ask to look at them cause they all look different. Especially near the end!
Acknowledge. I had someone carry something to my van the other day.  I said "oh I can carry that in my other hand." He said "I know" but decided to help me anyways. To acknowledge that they knew and understood was wow. I was actually surprised when he said he knew.  Thank you Dwight:)
Listen and Support. I have a few friends who get it. Who don't offer all of their opinions but are just there for me. And they aren't necessarily people I see every day or even every week or month. They are easy to pick out. They are even the acquaintances who ask how it's going. Who sincerely want to know and listen.  

There are three parts. The first was patience. The patience to read and hear about what I am going through. So if you made it through the first paragraph without rolling your eyes and thinking (here we go again). Congratulations. Lol To understand what is going on is important. The second was about acknowledging and accepting the fact. Even to joke about it. The third was to support. Whether it was by volunteering yourself in the MS walk this year (by walking or donating), by stopping me in the mall and asking me how it's going, or by being available for me to vent. All 3 are needed in order to really be there for any person who needs you. Love your neighbour as yourself. I needed to learn to love myself again before I could have compassion and love for others. And in that area I have grown tremendously but only because I've had to go through this myself. They say God works through the broken and in this case I was the one broken.

Who's The Boss?

We have been renovating our coffee shop. Well actually I haven't, just the boys and friends. I've sorted through dishes and kitchen stuff. It's lots of work. Lots of planning. I'm not sure exactly what this will look like for me but I'm excited to be able to be part of something on my own. I can be there when it suits me and when I'm able. I'll have to learn my limits and although the beginning will surely push me to my limits it's a price I'm willing to pay. I love being with people and I love coffee!  I can't hold down a job due to consistency and so being an owner of a small business where I can be in charge of me with only my own expectations to worry about is great. It's something that when I was first diagnosed I would never have thought possible. Sometimes you need to change your plans and have things adapt for you. I won't be able to do this cafe the way I would like....at least not at first. I wish I could everything I want right away but these are some of the things that I will have to learn to accept. I am an owner, not an employee and I can only do what I can to help things run smoothly and to train those who have the same passion. I pray for good reliable staff because that is one thing I will definitely be relying on. I have an amazing family who have encouraged and supported me and I'm not alone in this. Shawn will be a part of it as well. I guess him having 8 years (and a few myself) of McDonald's management skills will come in handy. See McD's is not all bad!!  But our coffee shop will be better. 😉 LOL. 

This Little Light Of Mine

In Grade 12 I remember reading a book for my English class.  I have no idea what it was called.  I can't even remember what it was about.  All I remember was that it was mandatory and everyone was required to write what their opinion was of that particular book, and why you held that opinion. 

Strange as it seems, (seeing that the teacher asked for our opinion) I was sure that this "A" student (in English at least) was going to definitely get a failing grade if I expressed my true thoughts on this book. My thoughts?  Basically that it was stupid and I gave details to support my thinking, one of which was that I thought it unnecessary to go into detail of someone going to the washroom.  Yup that's it.  That's ALL I can remember of that book.  Nothing else.  But I was going to let this teacher know what I thought in hopes that they would see my point of view and never make another kid read such a dumb book!! 

Looking back I don't think that teacher had some great epiphany from reading my expert opinion but I had this need to express it.  Which was probably why I got 100% in a debate for social studies in high school as well as many good grades in the 10th grade where were required to write short essays on various topics.  In case you're wondering I did get an 80% on my book review.

I've grown up that way.  Opinionated, always right, and not only thinking this but feeling the need to express it and better yet, make everyone else around me see my point of view and agree with it! 

These past 4 months especially, I've been growing.  I've bit my tongue. Many times. Because in the end it didn't matter. In the end it wouldn't have made someone change their mind or have some great clarity. It's about turning the focus off of me and my thoughts and considering the thoughts of others.  I have a long way to go, and am far from perfect!  Just ask my husband :)  But I know what it's like to want to have someone just listen.  To not pipe in their expert opinion and to just listen. That's been more helpful to me in this journey than the ones who have all the answers.  It doesn't just apply here, for this particular experience. A softened heart is where it starts.  Our attitudes reflect our actions.  Our actions don't change who we are. It sounds cliché but it's our hearts and attitudes that truly change our character.  In the end having people genuinely care about you and having a gentle spirit is most helpful to people. 

I've always had a soft heart towards hurting people but it was always overshadowed by my opinion of whether or not I saw it as legit. Should they just get over it? Are they their own worst enemies? Could they be doing something to help themselves?  In the end, my opinion doesn't matter, what they are going through and how I can be help does. Because I have Christ in me, I wanna let my light shine.

The Short Stick

I went away this weekend. To get away as a family after our hockey season. But before we left I half jokingly suggested that I not bring my meds. Shawn said ya and that he was thinking the same thing. 

What a weird feeling. To know that I was going to purposely miss a dose. It felt like I was sneaking out of the house past curfew. 

We pulled out of the driveway and down the street I realized that I actually had forgotten to pack them. I told Shawn and we decided not to go back for them. I was feeling guilty, yet relieved at the same time. 

Taking the medicine makes me tired. It makes me function at an even slower rate. I finally feel like myself two days after but by then it's time to take the next dose. So I usually end up with a good afternoon and evening and then start the process again. This weekend I was tired. But I had fun and got through Saturday which was the longest day. We shopped and by supper I was done but I knew that would happen which is why we planned for a movie that night. Also, I got to sleep in on Sunday because checkout wasn't until noon. 

I slept part of the way home and then until noon again today. And now I took the meds again. I told Shawn I don't want to take them. He told me I had to because I don't want to end up crippled. My response was that I'm living that way already. When I'm too tired body wise to accomplish anything. When it takes so much preparation to plan a day. 

I know it's not the same but it makes me angry. For some reason I want to throw in the towel with the meds and just live the best I can. It's like getting the short end of the stick either way. Just one takes longer to get.  Do I want to risk more severe issues in the end to live a better life now?  Or do I live with the limitations now and still get to live?  What if I don't take the meds and I'm no worse off in the end?  Only God knows the answer to that question though. 

The best example I can think of is the cancer patient who doesn't want treatment so they can live the next two years because they just want to live the next 6 months of their life to the fullest. Not with all of these limitations and feeling crappy. I know mine is not to that extreme but the idea feels the same. When do I want to grab the short stick? Now? Or later? 

 

Celebrate and Savour

I turned 33 yesterday. Not a huge milestone or anything but still. It made me question what do actually do when we "celebrate"?  Are we celebrating in certain ways?  Do we have traditions or something different that we do?  Why do we grow up and say that you're too old for a birthday party? Are we?  If it's a day to celebrate we should do just that. Celebrate. However that may be.

Oh but wait....every day is a gift and we should live like that's so. But do we?  I read a devotion last night and the lady in there had went to someone's house. This elderly lady never did two things at the same time. She wouldn't sit outside and enjoy the sun and conversation and have her tea and chocolate at the same time. Because she didn't want to overcrowd one experience with another. Maybe that's a bit extreme but the idea is good. How often do I overcrowd my day trying to multitask everything all the while not really be able to enjoy any of it? 

I want to celebrate and savour each day that I have. Take the time to enjoy the good moments even if the day has only one. What are the chances I'll miss out on it if I overcrowd it with everything else?  Probably pretty good. And how often in the process do I miss out on the good things God is telling me because I've overcrowded my day?  

I know this isn't directly talking about my MS but in a round about way it is. There are many days when it doesn't feel like it's a celebrating kind of day. But I shouldn't need an excuse like a birthday. I should be looking for the good and relishing those moments in the midst of the bad. Not always an easy task but I think I need I slow down. Maybe now more so than before. 

Basic life

I think I'm just going to start blogging about my life in general.  Letting you know what happened but still touching on how my ms is or isn't affecting me. The emotional toil it has on me that day. Etc. 

Like today. I got a call at midnight to go to a friends house because her water had broke. I was there until 6am and then fell asleep for a short bit. Got the kids up for school and went back to bed at 12:30. I forgot I had to meet someone at 2:30 so when I received the phone call that I wasn't there, I got up to go. Then off to the rink for the rest of evening. 

How will that affect me tomorrow?  Probably not great but we will see. I put in a full day on Saturday. Was dead tired Sunday but kept going and then Monday I didn't get out of bed until 1:30pm. I barely got up Tuesday too. 

So I know my household is suffering with me sleeping in the afternoon and struggling to get up but my evenings are very busy at the rink. Come the end of March things should return to normal but I'm running out of steam and my personal life can feel it.  I thank my kids for not complaining too much and because it feels like I hardly see them lately but they've been very patient. I really am blessed. I promise I'll be a better mom next month :).