Understanding GBS residuals 

I just read THE MOST informative article I’ve ever read about residuals after GBS, published by the New Zealand’s Nurses’ Organisation. Reading it makes me feel that our residuals have finally been recognized and documented. And it is so incredible to read an actual medical description about what happens to our nerves post GBS. I truly believe that what they describe in this article is what happened to me several weeks ago – something called a “neurologically induced crash”. It would certainly explain why I crashed so hard, why I had shortness of breath, and why my most recent neurological tests showed strong muscle strength.

Without having to read the lengthy article, these are the key points that I found fascinating:

-80% of the GBS patients studied have severe fatigue that interferes with their life post GBS. This finding is contrary to the frequent reassurance that after the initial acute phase of GBS, recovery is complete.

 -In GBS, the myelin sheath in the nerves and axons are damaged. Some of these wounds recover, but some do not. What may occur then, is the weak collateral nerves take over duties for transmitting to the nervous system. These alternate circuits have to do extra duty to replace the functions of the nerves that no longer work very well. The collateral nerves are simply not as strong or resilient.

-The nerves can no longer handle extra exertion, and when a person is stressed or doing too much, these collateral nerves are overloaded, and slow or even stop functioning. The person comes to a screeching halt and has a neurologically induced crash.

 -Others, and even those that have GBS, may think they have tired muscles, and that they will recover easily with rest. However it is not the muscles that are faulty; it is the nerves that are limiting functioning abilities. Tests for muscular strength will appear fine, for the muscles are doing all the work, and are possibly showing up even stronger than in other people. But it is the nerves that are not functioning.

 -Some of the nerves affected are essential to lung function and breathing, which may account for developing shortness of breath.

 -It is very important to listen to GBS patients. Those that have GBS are few and far between and are unique. Their bodies and nervous systems have been affected and have very unique problems and issues. The continuing pains, aches and fatigue that those who have had the disease are REAL and should not be taken lightly, dismissed, or ignored. 

This article can provide so much insight to those that don’t understand GBS and how it affects people after recovery. If you have been affected, or know someone that has been affected by GBS, please take the time to share this with your friends and family. I finally feel that we can explain to others what it is that we go through 

The full article can be read here :

https://www.thefreelibrary.com/amp/Understanding+residuals+in+Guillain-Barre+Syndrome%3A+peripheral+nerve…-a0121416904

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Posted in 2017 | Leave a comment

Forever changed 

I believe there are two ways to handle challenges – you can focus on the bad, and grumble, complain and sulk – or you can chose to see the good that can come out of it, and do something about it.

I recently applied for short term disability coverage for the time I was off work recently due to my flare up of residual symptoms from GBS. Unfortunately, that disability claim was denied. I really shouldn’t be that surprised, as most people don’t even know what GBS is, let alone understand the effects of it. I am more disappointed that they didn’t try to learn about GBS or request more information from me, they simply denied the claim. I’m sure they hoped I would just let it go. However I will not, and I will be appealing their decision. It’s not about the money whatsoever, its the fact that those of us that have had GBS suffer with long lasting effects from it, and we have every right to access disability coverage.

Most people who have had GBS suffer from some sort of residual, whether mild or severe. Many of us have to miss work due to these residuals, some have had to modify their work hours, change careers, or even completely stop working. Too many people with GBS (and even other disorders) are denied disability coverage because of the lack of understanding and knowledge of the disease. The residuals may not be obvious to others, but they DO create severe limitations, as I experienced myself last month. My hope is that every GBS survivor would fight back on declined claims, but not everyone has the energy for that. However we need to educate others so there is that better understanding, which is exactly why I am appealing.

I understand that GBS is considered “rare” because it only affects about 0.001 % of the population. But rare does NOT mean that it doesn’t exist. And just because someone may not understand it, and just because patients recover and may not be in a wheelchair anymore, doesn’t mean the residuals symptoms are not happening. This disease attacks our nerves, paralyzing our bodies for weeks, months, even years. Our bodies and our nervous systems are changed forever. It shouldn’t be that hard to understand that we would deal with some sort of lingering affects from it.

I’m used to people staring back at me with a blank look on their face, when I tell them I had a disease called GBS, because they’ve never heard of it before. I’m used to my family doctor asking ME questions about GBS, because I know much more about it then he does. I’m used to getting a look of complete shock from health professionals, when I tell them I had GBS, because its probably the first time they’ve come in contact with it since reading about it in their textbooks. However I never thought that I would be declined disability coverage, when my residuals that I deal with are the exact definition of how they define a disability.

While being denied a disability claim by an insurance company is frustrating, I chose to look at it as a great opportunity to educate them on my disease. My disease may be rare; it may not be all that understood, but it is REAL, and I will stand up for it, for myself, and for others. Spreading awareness on rare illnesses is the only way to create a more accepting and understanding world of what it is that we go through. And for that reason, I will never stop sharing my journey with this disease.

Posted in 2017 | Leave a comment

When your body say’s NO

For those of you that don’t know, I am currently battling a very severe flare up. A flare can be described as a sudden exacerbation of a disease; in my case Guillain-Barre. A flare is not the same as the day to day variations of residuals we deal with; a flare is characterized by a sudden and severe increase in symptoms. I’ve had flare ups before, that usually last a day or two, but they are pretty minor, and this one is proving to be quite severe.

When I have flare ups, they are always from pushing myself too hard. I usually get them after a really busy time in my life, or when I don’t get enough sleep. In this case it was both – in the week prior to this flare, I had gone through the process of buying a new car, I was working on 2 major projects at work, I went to the gym 6 days out of 7,  we hosted 19 people over for Thanksgiving, and then we went out with friends and I drank too much and slept too little. The two weeks before that hadn’t been much slower; we were getting back into the routine of school, I ran my first 5 km run in years (with my best time!), I helped organize the fundraising efforts for the run for the GBS Foundation, and I was very busy at my full time job. Every day for a while has been pretty hectic and busy in our lives.

What started out on Tuesday as feeling tired, slowly progressed through the week to severe fatigue. I was sleeping well, but yet still felt worse each morning last week. I had a mild head ache every day and felt so exhausted that I was finding it hard to concentrate. By Thursday, even though I was sleeping and napping 8-12 hours a night, I was so mentally exhausted I could barely handle having a conversation anymore. I was having a hard time remembering things, and I was struggling with focus. A few times that day I was sure I stared off into space for more than half an hour. I felt like a zombie. Thursday night was my breaking point, when I was so overwhelmed at even driving my car that I had a panic attack in the parking lot at my massage therapist’s office.  I had never felt so exhausted in my life, to the point that I couldn’t even do basic tasks like drive! I took the day off on Friday to rest and was sure that I would feel better after a good sleep. And after sleeping in and watching movies most of the day Friday, I finally felt like myself again.

Because I was feeling a lot better, we headed out to Calgary for the weekend to attend a Halloween party with the kids and Jordan’s family. While I knew I needed to rest, I also knew that other than the party we weren’t doing much else, and I would get plenty of time to relax. But over the next 24 hours I only got worse. I just felt more and more exhausted again. This feeling was debilitating;  I felt so tired and weak that the only way I felt ok was when I was laying down. My hands, fingers and upper body started to tingle, and felt so heavy. I could barely hold up my head. These were the same sensations I had felt when I first had GBS 6 years ago, only this time it was more my upper body, not my legs. Even though some things felt different, some things felt eerily the same. I tested my reflexes (which are absent in a case of GBS), and they were very weak. I started to think that GBS was coming back. And as much as I felt terrified, a part of me felt a sense of relief, as if this could be an explanation for the way I had been feeling all week. I don’t know how I could even think like that.

By Saturday afternoon, my symptoms were so severe, that I had Jordan take me to the hospital. I was so weak and tingly, and I was starting to get short of breath and feared I was going to go into respiratory failure. I pretended to shrug it off as just being exhausted, but deep down I felt something was seriously wrong. It was a very scary feeling, walking into that hospital, not sure when I would walk out. The last time I walked into to the Emergency Room I didn’t come home for 5 months.  I made Jordan promise me that if I got admitted, he needed to make sure they sent me back to Edmonton to the Grey Nuns hospital where I had been before. I was terrified. But the nurses were so supportive from the second I walked in, making sure I got in to see a doctor asap.

A nurse immediately took my vitals, and a doctor came to look me over. Then started all the different neurological assessments that I had forgotten about; the ones I had done at least once a week back in the hospital. The Dr. tested my strength, my motor and sensory function, and my reflexes – throughout my body. A respiratory therapist came down and did several pulmonary function tests – basically checking the strength of my lungs. After they were done, the Dr. told me that everything actually looked great. Not only had I passed all the tests, I was actually above what they would expect for someone my age. My strength, reflexes, and breathing was above average. It did not look like GBS. However, given my history, and given the way I was feeling, they weren’t taking any chances. They moved me to another room to monitor me. I was to tell them immediately if I started to feel worse. After several hours of waiting and not feeling any worse, my fears subsided. I knew that if this was GBS I would be getting progressively weaker, and I wasn’t. The nurse and Dr. mentioned putting in an IV and monitoring me for longer, but I didn’t think it was necessary. As the Dr. noted, I was not showing any obvious symptoms of GBS to them on their tests, and if it was GBS, they would have seen something by now. By this point my bloodwork had come back fine. They chose not to proceed with a spinal tap, and I was free to go. I felt a huge sense of relief. I knew that this was probably just a very extreme flare up and my body’s way of shutting down. I was so grateful that the hospital staff never once treated me like I was paranoid or making things up. They were extremely cautious, thorough and understanding, and told me that if anything changed to come back right away.

After laying down in the hospital all day long, and knowing now that it wasn’t GBS, I felt a lot better. I finally had a bit of energy. We headed over to the Halloween party, dressed up and got to catch the end of all the fun activities.

The next day I felt a little better, but I was still quite weak and tired. We returned to Edmonton and I slept on and off the rest of the day.

I saw my family physician Monday morning. It appeared to him that my body and mind was just overtired and overworked. From having GBS, my body just cant handle stress the way a normal 32 year old would and it shows up in a flare of symptoms. He gave me a B12 shot and took me off work for a week to recover. I have since learned that B12 is very important to GBS patients – it is essential for the proper functioning of the nerves. B12 maintains the myelin around the nerves in the peripheral nervous system – these are the nerves that GBS attacks. A lack of B12 can cause weakness, severe fatigue, nerve problems like tingling and pain, and trouble concentrating. For this reason, I will be getting B12 injections from my Dr. for the next 6 months.

Although this is the first time this has happened to me (for this long anyway) it turns out what I have been dealing with is actually very common in GBS patients. I am not the first one to feel as if GBS was coming back when it’s not. I am not the first one to deal with this debilitating fatigue and exhaustion, and it feels good to know that I am not alone.

I am now at home recovering. At this point I am still so fatigued that I can not be up for more than 15 minutes at a time without needing to lay back down. I am napping several times a day and I still feel very weak. It reminds me so much of when I first got out of the hospital from GBS. Other than not being able to walk, I feel like I am recovering from GBS all over again. I am focusing on getting one or two tasks done a day so I don’t feel like a complete waste of skin, and resting as much as possible. Its hard for me not to feel guilty for not being able to do much right now, but thankfully I have such a wonderful supportive boyfriend that understands and is taking great care of me. I am very hopeful that once the B12 kicks in in a few days, I will feel like myself again.

Please know, that I don’t share my story for pity or for attention. I assure you, I’m a very  strong woman and I can handle all this. I share my story to raise awareness. Not only for GBS, but for other diseases too, where flare ups happen – fibromyalgia, lupus, ms, etc. I share this experience to remind others that just because someone may not look sick, doesn’t mean they aren’t. When I talk about this fatigue that I’ve been experiencing, I know many of you think that I am talking about being extremely tired. I am not. I am talking about a severe state of extreme physical and mental exhaustion. It impacts your emotional and psychological well being, and it is not just resolved by sleeping. I am talking about being so fatigued that you get completely overwhelmed with doing simple tasks – things like driving a car, putting on your makeup, getting a drink of water, sometimes even getting up to stand. You feel so overwhelmed that you cry and have panic attacks over having to do anything. It is so severe, that its hard to find words and form sentences in your head to have a conversation with someone. It is so severe it can leave you bed ridden. Many people will never experience this type of fatigue; I know I hadn’t before having GBS.

To further explain, I like to use the ‘spoon theory’, by Christine Miserandino. This theory is a disability metaphor used to explain the reduced amount of energy available to the chronically ill.  A healthy, young person gets an unlimited amount of spoons (energy) each day to do as they please. Someone who has a chronic disease, may only get 12 spoons a day. Things like showering, putting on your makeup, driving, etc, takes up one spoon…working, going for a walk, cooking dinner, can take 2 or 3. If they use up all their spoons before the day is over, they will be left with that severe fatigue that I have been dealing with. They have to mentally prepare their days in advance because once their spoons are gone, they are gone. Sometimes you can borrow from tomorrow’s spoons, but just think how hard it will be for that person tomorrow, having less. Chronically ill people have a lot less spoons than someone that is healthy, but a lot of the time they still have the same amount of things to do. And many times, this fatigue is not apparent to others. Someone who is experiencing a flare up, may not show any outward signs of their illness. The point I am trying to make, is just because you see someone that is chronically ill, say, grocery shopping, doesn’t mean they are fine. You have no idea what it took for that person to get there, or what it will mean for them for the next few days. So please stop and think before you judge someone on their disease and what you don’t know.

It’s very strange being at home right now – I am so not cut out for not working. Other than going on vacation, I don’t even remember the last time I have been at home doing nothing. And I cant wait to start feeling better and back into my routine again. Yes I am going to have to get back into things very slowly, but I am confident that I will be back stronger than ever before I know it.

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I run because I CAN.

Yesterday was such an incredible day at the NERD run. We beat our goal and raised over $2500 for the GBS foundation and for peripheral nerve research at the NMHI. I ran over 5 km in about 28 minutes, which was me best time I have EVER ran.

Thank you Global News and City News for sharing our stories, it is such great awareness for Guillain Barre Syndrome.  Thank you to my fellow GBS survivors Kit and Jenny, and my bf Jordan and stepddad Dennis, for doing the run with me. And thank you to everyone that donated!! I am feeling so proud and my heart is so full!

 

~

“I run for Guillain Barre Sundrome. I run for the funding needed to learn more about about this rare disease. I run for the research needed to one day find a cure. I run for the families that are impacted by this devastating illness. I run for those whose lives were tragically taken from complications from GBS. I run for the survivors that are left with residuals and weakness, and can longer run. I run for the survivors that are left with disabilities, that can no longer walk. I run because I am so fortunate that I can.”

-Holly

 

 

Posted in 2017 | Leave a comment

NERD RUN for neurology and peripheral nerve research.

Hey everyone! I need your support to help raise some money for GBS! Myself and my team are running 5 kms each this upcoming Saturday in the NERD run, a fundraising event that raises money for the Neuroscience and Mental Health Institute. The GBS Foundation has partnered with NHMI, and their research can potentially teach us even more about Guillain Barre syndrome. 80% of the money we raise on our team will be donated to the GBS foundation and 20% to the NMHI in support of neurology and peripheral nerve research. It would mean so much to me if you could please help us reach our fundraising goal! Click the link below to donate, every little bit counts!

https://www.canadahelps.org/en/charities/gbscidp-foundation-of-canada/NERD/

 

 

Posted in 2017 | Leave a comment

“Life is short, but my heels shouldn’t be” – How I strengthened my ankles after GBS and got back into high heels.

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If you were to walk into a room full of GBS survivors, you would see people of all different abilities. Many of them would be walking around appearing completely ‘normal’, as if they’d never had GBS; some may be wearing arm or leg braces, some using canes or walkers, and some may be in wheelchairs. Unfortunately about 30% of GBS survivors are left with a lack of strength and balance, and need assistance with walking. The one thing that I notice right away (because this is how my mind works), is that there is almost never anyone wearing high heels. Our feet are usually the last part of our body to regain strength after paralysis, and most of the time our ankles remain the weakest part of our body – limiting many of us from wearing high heels anymore. And one of the most common questions I get from women who had GBS that reach out to me, is “WHAT can I do to strengthen my ankles, so that I can get back into heels!?!

Trust me ladies, I feel your pain. Not being able to wear high heels was one of the hardest things for me to accept about my recovery. Partly because I had worked so hard to get to where I was – not only could I do everything I had done before GBS, I was even stronger in a lot of areas. So it was frustrating to see progress everywhere else in my body, expect in my ankles. But mostly, it was hard for me not being able to wear them, because I felt like I was still missing a piece of myself that I lost from GBS. Now please bear with me, I know that not being able to wear high heels is a minor thing to be complaining about. I am grateful that I’ve had such an incredible recovery and can do all that I am able to. But wearing high heels really was a huge part of who I was as person.

I STILL remember the first pair of heels I bought when I was 11 years old. They were a black pair of round toed Mary Janes, and were honestly about 3 inches high. I wore them the entire day around the house when I got home from getting them, and was an instant pro. I felt like a million bucks. Over the years as I grew into an adult, I wore heels more and more. When I put on a pair of heels – as many women can relate – I felt transformed: physically and emotionally. They made me feel feminine, beautiful and sexy. I never felt more confident than when I was in a pair of stilettos and I rarely left my house without wearing a pair. Other than running shoes or flip flops, I can’t even remember a pair of flats that I owned prior to GBS – I even wore 3 inch heels when I was 9 months pregnant! So not being strong enough to wear them anymore after going through GBS, really made me feel like I wasn’t “me” anymore.

During the first year and a half of my recovery, my focus was on improving the overall strength in my legs. I had to work on simple things, like how to squat down to pick up objects, how to get down on the floor with Casey, (AND even harder, how to get back up), how to lift my toes up when I walked so they didn’t catch on the ground, how to lift my legs up when I went up stairs, and even how to walk in flip flops. Walking in high heels really was the least of my worries, or my focus.

But as time went on, the thought of wearing them again slowly crept into my thoughts. I am 5”7 and used to wear 3 inch heels, so after GBS, I would constantly hear from people that they couldn’t believe how much shorter I was now. I would stare at my collection of heels in my basement that were collecting dust, and my heart would break. Yes, wearing heels truly made me HAPPY! I NEEDED to do SOMETHING in hopes of wearing them again, even if that meant just wearing little kitten heels! So I started working on strengthening my legs and ankles.

If you have recovered, but still aren’t able to wear heels, here are some great things to get started:

Start running. Getting your feet up and off the ground is a great overall exercise to strengthen your legs and ankles. If this isn’t something you are able to do yet, just start with intervals. If that means you only run for 10, or 20 or 30 seconds at a time, and break for a minute or two, so be it! Anything is helpful. For a good three or four years I only ever did intervals of one minute of running and one minute of walking until I was more comfortable running more. And be sure to give your ankles a break afterwards – still to this day I NEVER run on a treadmill two days in a row. You need to give your ankles a break from that hard impact you get from running, so instead alternate with a stepper or elliptical or other low impact equipment.

A step machine is much less impact than running, but also gets your foot pushing off the ankle. To step it up a notch, try stepping using your tippy toes.

You also need to get your foot used to being up in that “high heel” position. Standing calf raises, and walking around holding onto a railing on your tippy toes, will help shift the weight onto the balls of of your feet. Walking along the railing at my gym standing up on my tippy toes is something I used to spend a few minutes doing at the end of all my workouts – I’m sure I looked silly doing it, but it helped SO much!!

Once you have gotten used to these exercises and start to feel stronger when you do them, introduce a very small kitten heel into your life. Start by practicing wearing them around the house a little bit at a time. Once you are comfortable doing that, incorporate them into your daily routine. Find somewhere that you can wear them routinely and safely, somewhere that doesn’t require a lot of walking, and somewhere that does not have any uneven ground. For me this was at work – I would generally only be walking to and from my car and a bit of walking around my office, and I knew the environment would be safe to do so. Over time, my ankles just started to get more and more used to them until I was completely comfortable wearing those kitten heels every day.

It was a very long time before I found the courage to try something higher. Every time I would put on an old pair of 3 inch stilettos,  it would feel unsafe. I just didn’t feel confident enough in myself to walk in them, so I gave up on trying to wear any shoe with a heel that was over an inch high. And this lasted for a few years. I would check out the shoe section in stores and would admire all the gorgous heels, and again, it would break my heart that I knew I couldn’t wear them anymore. I had gone out and bought myself a ton of cute flats and sandals that I loved, but I was stuck wearing little heels that made me feel like my grandma. And even though I had come so far, I still felt like that piece of me was missing.

In December of this past year, after thinking long and hard about my New Years Resolutions, I made the decision to put in more effort to wear the shoes I really wanted to wear. I knew that all I had to do was implement the same thing I had done with the kitten heel, only with a higher shoe. If I had done that, I could do this.

I purchased a pair of boots with a two inch block heel hoping to start there. I quickly discovered that block heels were so much better; they gave me the stability I needed – and the height I wanted. They were so much easier to walk in than stilettos, AND helped my foot get used to being in a higher heel. It wasn’t too long after wearing them a lot that I felt comfortable standing in a three inch heel again.

In January I made the decision that no matter what, I would wear heels at least 3 out of 5 work days. It could be a mix of block heels/stilettos, but they had to be over 2 inches at least. I knew that the more I practiced, the better I would be at wearing them. And my office was the safest place for me to do it.

And as the last eight months have gone on, and I have stuck my resolution, I can finally say that I am back to wearing the shoes I actually WANT to wear.

I still ALWAYS have to think about the environment I’m going to when leaving my house – if there will be uneven ground, or if I am going somewhere that requires a lot of walking, or if Im going out dancing ( or drinking!) then  I won’t usually wear high heels. Sometimes I can still be a bit wobbly from lack of balance, and I’m sure my mom cringes when she sees me rocking such high heels. I am also sure that my PT’s from the hospital would just tell me to stay off of them given my history.  But this is me we are talking about – the girl that stopped wearing my leg braces because I was determined to learn to walk without them. I am the girl that likes to push beyond my limits and I refuse to let GBS hold me back from my goals!

I hope that some of you that may have given up on wearing heels are inspired by me to give it another try. Take your time, listen to your body but push yourself a little. Start slowly and be patient – remember, it’s taken me SIX years to get to where I am today – but one day you just might look back and be proud that you tried.

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*Please remember that I am not a doctor or physical therapist, therefore it is very important that you talk to them prior to starting any sort of new activity (even high heel wearing). Given the fragile nature of our ankles we have to be very careful and pay attention to our bodies when they say stop”

Posted in 2017 | Leave a comment

I am a badass.

1The last couple months , I haven’t really been feeling like myself. A big part of it has been because of summer and a lack of having routine – which I do best with. Being in a blended family with a mixture of schedules is hard, and with the kids out of school and spending their days with several different people while we work, its made it even harder. Also, while I’ve still been getting to the gym a lot, it has been a bit less than I’m used to, and I’ve slacked big time on my nutrition (summer is hard!!). So I haven’t been feeling all that healthy. I’m definitely looking forward to getting back into a routine and schedule come September.

I have recently been working on my will and life insurance (YES this girl, who was very close to dying once in her life, did not have a will!!!), and it’s been making me feel sorta….I dunno… restless. I think putting a plan in action for my death, made me start thinking about my life, and made me wonder if I truly am living to the fullest. But, I have a loving boyfriend that is so supportive, an incredible group of family and friends, a great career that pays well, and best of all, I am healthy and ALIVE. I get to have a lot of fun in my life, and I am genuinely happy. So why was I feeling like something was missing? Why was I feeling like I could do MORE?

And HOW? My life is crazy enough as it is, how could I possibly fit anything else into my schedule. Work is crazy busy, life is crazy busy, and dealing with fatigue from this damn illness leaves me completely exhausted by the end of the day as it is.

Without really knowing where to start,  I  decided to deactivate my Facebook account. I still have my public business profile, just not a personal account anymore- so no more newsfeed. I was spending hours of my day scrolling through it, yet I was completely tired of the drama and negativity, and was getting nothing out of it. I knew it was playing a huge part of my dissatisfaction, because in my heart I know there are much more fulfilling things I could be doing with my time than go on Facebook. 

It was a good start, and while I feel great being FB free now, it didn’t cure my feeling of restlessness.  I still wasn’t quite sure what to do next.

It’s funny how things can happen at just the right time in our lives. Following a vacation with the kids that left me more stressed than when we left (I guess that’s why they say it really isn’t a vacation when you have three kids lol), I went for a coffee over at my girlfriends. This friend is the woman who is always bubbly, she is always positive and she always puts me in a good mood when I’m with her. She is also the type of person that is always working on herself and reading self development books, so when I was there, I thought maybe she might have a book that I could read. 

I skimmed through her books and randomly decided to take one called “You are a badass – How to stop doubting your greatness and living an awesome life” by Jen Sincero. I didn’t really know what it was about (and I personally didn’t think I was living with self doubt) but I did like the rest of the title so I grabbed it. 

I started reading it later that night, and within a few pages of reading, I was hooked. It completely changed my mindset about my life almost immediately and energized me in a way that I hadn’t felt in a while.

Without giving too much away in the book, I will just say that it’s a great starter book if you are looking to start doing self development.  And a great reminder for those of us that have been doing it for a while. It really focuses on the importance of mindset and going after what you want in life.

It’s reminded me that we need to do things that make us HAPPY. We need to do things that ENERGIZE us; things that we FANTASIZE about doing. We need to stop saying we want to do something in our lives, and go for it now. I cant count how many times I have thought about doing something, but then never followed through. As someone who went through a near death experience in my twenties, I  already KNOW the importance of all this.

But now I know that I need to do it more. Life is so short and can change at any minute. We have to go after our goals now not later. We have to think about all the different things that we want out of life, and then start making them happen.

One of the things that I have been saying for years, is how much I love writing. But that I just don’t have the time to do it. Yet it’s something that makes me happy,  it energizes me, and it’s something that I fantasize about doing…so why am I not doing it?! I have an average of 20,000 vistors a year to my website – so why wouldn’t I make the time and write more on it! It seems like a no brainer to me.  So starting to blog more often is something I’m going to commit to doing.

One of the other things that I know I love doing, is connecting with others with GBS, and supporting them in any way that I can. For the past 4 years or so I have been volunteering with the GBS Foundation of Canada, and its always something that has given me a huge sense of purpose. When I get a chance to talk with others and share my story, I feel like I have truly made a difference in people’s lives. But I have always wanted to do more, but again just didn’t know how. So to expand on that I have decided to start donating a portion of my book sales to those affected by GBS. In the past I have donated it to the GBS Foundation directly, but I personally feel that I could make more of an impact if I gave it to someone specifically. The effects of GBS can be financially devastating, from being off work, to your family being off work to support you, plus the medical costs,  the physio costs, the wheelchairs, the walkers, etc, etc – the list can go on and on – especially if you are left with permanent disabilities. I was fortunate that my friends threw my family a fundraiser, and with the help of local media, donations were raised so that we did not have to struggle. And that is something that I want to do for others as well. It’s something that I know will energize my soul.

My plan is to be more active on my site and on social media to connect with you all, because that’s what makes me happy. I’m really looking forward to having more of a presence on here and hope that I can share my story again and again and reach more people around the world. Because in the end, why I made my video and wrote my book, was to make an impact on others. And I believe that is my purpose in life, and why I got GBS.

I’m so glad that I read that book. It’s reminded me that I am a badass, and that with the right tools, we really can have the life that we want if we put in the effort.

If you are feeling lost or confused or restless, don’t sit around sulking and doing nothing about it. You are in control of your life – go after the things that you know are going to make you happy !!!

 

Posted in 2017 | Leave a comment