A Little Lecture 😉

It's been two years. I hear support from the ones who are close to me. Even from some who are more like aquaintences. But to hear when people question why and how and what you are doing... is tough. And it's not to me but to others. I honestly think gossip is the toughest thing to swallow. So please consider your words before you speak. And be careful little ears what you hear. Being on the receiving end is supporting it just the same. That's it. Short and sweet and to the point. Lecture over. Thanks for listening. 😉

I still matter

I'm tired. Tired of fighting for every bit of help.  I had my MRI almost 2 months ago. I've been having issues, some of which have dissipated in the last 4 weeks, some that have gotten worse. I've called the clinic. Spoke to the nurses. They've left notes for the doctor. But 2 months later I still don't know the results. I still am not getting any help for the upper body numbness, tingling, and itchy sensation.  In a weird way I'm thankful it's completely numb now so it doesn't hurt and itch. But why should I have to be grateful for that?  I don't know if the meds are working because there is no report yet.  I don't know who to blame.  A doctor with over 700 patients is definitely overloaded. But I still matter. So who is here to help me?

15 years from now

It's hard sometimes to not think about the future. I look at my symptoms compared to what they were two years ago. I see how much more frequent things are and how much faster they occur.  It's hard to not get discouraged and think about where things be at 10 or 15 years from now.  What will it be like when I'm 50?  (That's 17 if you want to do the math)

There has been an ALS ice bucket challenge and I think about the awareness it is bringing. 400% increase in donations!  That's awesome and amazing. It's a scary disease as it hits hard and fast. What I wish is that MS has the same awareness brought to it. There are many with progressive MS and 65% of people with Relapsing remitting MS will develop SPMS (secondary progressive MS) within 15 years. This is when your symptoms or relapses never go away completely and the conditions continually get worse. It sometimes feels as though the odds aren't all that great.

In the last couple of months I've noticed that I'm losing feeling in my feet. It's not returning. And my face on the left side usually has slight numbness on a regular basis on and off throughout the day. It's not major things but it's slow and sometimes easy to forget where I was a few months ago.  I heard one person say that they love the MS walk but the one bad thing is that they notice how different it is for them every year. They see the decrease in capabilities. I think that's a good way to put it. Sometimes I forget what normal feel likes cause I'm always adjusting to a new normal.  In a sad way this blog will help me look back and remember. I hope 15 years from now I can look back and see not much difference but I'll be honest...its tough to think like that. Maybe just maybe in 15 years thee will be a way to fix me.

Better than expected

I'm almost too tired to blog but it's been a while so I'll keep it short. Just wanted to say that I'm very thankful for the staff we have. I've been able to trade off with Shawn and supervise for the most part. They've caught on really fast and so far are very reliable.  I feel like this has turned out better than I could have imagined. I was worried I was going to be there way more and be exhausted for the first while but it's been the opposite. Even if I'm there I just watch and help the odd time. It's very awesome to see how this has turned out. Shawn is back to work in a few days but that's ok. I'm Sooo happy with our staff so far!  And so grateful for my mom who's held down the fort here the past 2 weeks:)

Having said that it feels like the summer has flown by! But we are taking the long weekend to go away and spend some quality time as a family before school starts. Only 3 weeks til then!

Don't Be A Stranger

I hate when I can't sleep. I slept for about 2 hours. Woke up. Now it's been an hour and I can't get to sleep again. Right now is not the time for insomnia!  

Our cafe is opening soon and I feel like I'm on the verge of burnout. There is so much going on right now and even though I'm doing only a fraction of what Shawn is, I feel like I can barely keep up. Don't even begin to ask me when the last time I cooked a meal or had time to clean. There's always time I guess but not the energy. Even if I go help out for half a day I'm shot.  Having said that...

I can't wait until we're open!  I'm very excited and nervous. I'm not sure what this will look like for me but I'm excited to be out of the house a bit and I'm sure you'll see me sitting with a latte in hand quite a bit. So stop in to visit and don't be a stranger. If I'm not in the main area feel free to peek your head around the corner into the office. Lol. At least for the first few weeks while we attempt to figure this out. Thankfully Shawn has holidays to help get this off the ground and my mom is coming to help hold down the fort here. We might just get a home cooked meal yet!!  

Well it's 3:20 now so I'm going to attempt some sleep. Our first order comes in tomorrow and I get to play some more with the drink machines. ;). 

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 :). 

The Secret Side

I'm laying here thinking about how this sucks. I can see it coming. I know the signs but sit in denial yet again. I've had symptoms for weeks now. Here and there. On and off. It's just been more constant. 

I woke up today with back spasms or cramping. I googled it. Only because I sometimes have no idea if it's a symptom or something else. It can definitely be related. So then I go to the rink and at intermission I feel like I have jello for legs. I get home and crash. Sleep for a good couple of hours only to wake up and have the left side of my face numb and weak legs. I go to the rink again and I wonder why I push myself. I don't know. I guess I just try to live as normal as possible and it's better than sitting around here.

My friend asks how I'm doing and I start crying. Right there in the rink full of people. I lay here with tingling legs. It's easy for me to put a brave face on. Kind of have a split personality. Lol. I tell you this especially for those who saw me today and think everything is fine, to say that things are not always as they appear. And to be real in this blogging experience. 

It's easy to hide things when you don't have a visible crutch. Everything is not always as it appears. It's like a secret side of life. So please be slow to judge. Not only in my case but in the case of others. You never know what life is like for someone else. So show them love and kindness instead of anger and ridicule. 

And thank you to my friend(s) for asking. :). Sometimes you just need a shoulder to cry on. xoxo

Justification

I still struggle with feeling the need to justify myself to others.  I don't deal with insults or rude remarks but sometimes its the questions people ask.  I answer, but feel this need to have them understand and to agree with me.  I want so desperately to have someone understand exactly what it is I deal with.  Why I can do some things and not others.  Why I do or say the things I do.  This disease is so complicated.  Mood swings, slurred speech.  Things that you would just chalk up to being grumpy or mixed your words up (haha).  Forgetting things like meeting your friends for a date.  It's not that I don't care or that I'm caught up in my own world.  I feel like these things are getting so much worse and it's harder for me to act like myself.  There are days when I just want to stay away, to be in my own world.  But on the other hand there are days when I can't stand to be myself cause I'm driving myself crazy!

 In some aspects of this disease it feels like a mental illness.  They say it causes depression.  I'm not depressed because I have MS but there are days where I think I feel that MS is causing the depression, much like a drug can cause depression.  Don't get me wrong, I'm not depressed but I have days that I feel angry and short fused and I know it's because the MS is causing it.  It's not a conclusion you can come to overnight because you need to take in many other factors.  See there I go again....feeling the need to justify my conclusion. 

I'm frustrated and feeling pretty alone in this battle right now.  There are things that are going on in my body.  I know things aren't normal right now and if I was to have an MRI right now I would bet money that I have "active" lesions right now.  I just really really wish that I was normal again.

What does it really mean?

What do I think of research?  Do I believe they will find a cure for MS? Those are tough questions because I don't have a straight forward answer. 

People come knocking on your door. Others phone. Everywhere you go it always seems like there is some other charity or cause to give to. So what does it mean when you give to a cause?  It depends I guess. Depends if it's something near and dear to you or just an obligation or in support of someone. 

Sometimes I feel like research is futile. Cancer is still out there, Aids, Diabetes, Heart Disease etc.  But when it comes to MS it is now something that is obviously near and dear to my heart. Was it before?  Nope!  I didn't even realize what it was. It was just something I had heard of before, and I had many misconceptions about it. 

Last year I decided to start a team "Grace" to participate in the MS walk. I had never done anything like this.  Little did I know that this team would grow to over 30 members and raise almost $10,000!!  The Morden coordinators were shocked. We were in the paper, and my husband was interviewed on the radio.  And in all of that it helped me. I'm not used to having people know how I have something wrong with me. The interview with the paper and radio was something my husband did because I just couldn't tell them. I couldn't say what wrong. I felt ashamed. I felt like everyone was now staring at me and it made me uncomfortable to ask people for money. So what did I do?  I "Facebooked" it....a lot!!  What happened?  We raised a lot of money!  Even if I annoyed the heck out people! Lol. And the next best thing was was that I felt support. It was more than just the fact of people giving money. It showed that people actually cared. People I had not seen since high school, people in the community that we had only been in for 2 years gave us money from their wallets. Hard earned money that could have been used on so many other things. They gave it...to our team...in support of me. 

Research for MS has come a LONG way. More so than many other diseases. Medicine from 20 years ago has changed the course of MS drastically. So yes I have hope. And not a fleeting kind of hope but a strong hope that there will be more breakthroughs giving people back their quality of life. 

So when you give know that it means more than just the fact of raising dollars. It shows the person you care. No matter who you are or what you are giving to. It matters to someone. 

To make a donation or to join team Grace in the Morden walk go to 

www.mswalks.ca 

My Heart Breaks For The Man I Love

I'm struggling with what to call this post. In some ways the inevitable has finally happened. The walls of Jericho tumbling down may seem excessive but somehow fitting.  The mighty giant has fallen?  That too seems a bit exaggeratory.  However I hope you can catch my drift.

We've all heard the saying of when life gives you lemons, make lemonade.  That's easier said than done.  It sometimes feels like it takes the length of making wine. And hopefully when it's finished it tastes good or you waited that long for nothing. Okay enough with the metaphors. Especially since I don't even like wine.

My husband has finally let this hit him. And now he has a to take the road ahead. A road that not many have travelled. I have. It's tough. Every day is a decision. Not to be angry. To get out of bed. To put one foot in front of the other.

Asking God "why?"  I'm not sure what the stages of grief are but I know one of them is anger. Probably the biggest one that I've had to go through. Questioning God and just being plain mad!  I don't know what the days ahead look like. I don't know how to help him. I don't think I can other than to be by his side like he was for me and to pray for him. 

There were two devotions I read today (because I missed yesterday). And oh how fitting they were.

It's almost a relief to finally know that he feels something!  But it breaks my heart because I know how much it hurts. I think I know now what to call this post.