Well 2020 is under way and although I’m still dealing with severe fatigue that has me exhausted continuously, I still have high hopes that I will get some relief from this soon.

I hope that your year is off to a great start and you have lots planned for this new decade.

This week I attended a funeral for a close friend, and it made me further examine my own life, as these types of events often do. I apologize in advance if I become a bit to deep for some of you from here on out, but I wanted to leave you guys with just some raw thoughts.

It dawned on me, more so this week how short this collection of life moments, good or bad really are. What I am trying to say is that nothing is ever perfect, and we’re always in the midst of striving for more, and are in pursuit of something, while life, and the lives we want to live, that require us to just slow down and notice, pass us by.

In saying that my take away for myself, is to be more present and aware of my surroundings and to be happier in every moment. In doing so I hope to capture more from this life. And of course I’ll keep on smiling as often as I can for sure.

My plan for 2020 is to improve this blog and move it to a different format. I’m doing this for you, to make reading the blog a better experience. There will be a lot of exciting things happening.

BIG NEWS…

Blog posts going forward can be found on Rightlegdown.com.

Previous blog posts that have been posted here will be available on the new site for you to go back and check out and of course the pictures of Zissou.

Still smiling,

C

Edited by Aaron Andreino

p.s. Be sure to follow me on Instagram @rightlegdown for updates and new post details

This post is coming out later then I had planned but with this extreme fatigue I’m finding it hard to find motivation to write.

Last week I attended the MS Connect Conference that was held in Halifax. This is an event held by the MS Society at various locations across the country.

These are the presenters at the conference. To my surprise none of these speakers were clinicians but all researchers.

•Dr. George Robertson:

Dr. Robertson discussed the current MS therapies to reduce clinical relapses. The importance of how disease progression occurs is significant in the development in better treatments.

•Dr. Michelle Plougman :

Dr. Ploughman discussed her study which was Canada’s largest of the health and ageing with MS. To her surprise social interaction was a big help in overall health. Which I can agree with 100% as I have been off work for over a month due to an MS relapse; I am definitely missing social interaction from my life.

Also, surprise, surprise, exercise was shown during Dr. Ploughman presentation to have a positive impact on slowing disease progression in MS. When is exercise not a good idea eh?! It seems like exercise is always a good idea for everything in life.

It was great to learn that people with MS are living longer than ever before. I was really happy to find this out as there are still so many unknowns with MS.

•Dr. Craig Moore :

He discussed the recent breakthroughs and challenges with treating MS. There was definitely a positive outlook for the future and hopes of new medication. I believe that when the time comes when a cure is found therapies will be developed to a make life of those with MS very much like what they feel is normal to them ie life before MS.

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Also, Biogen was there as a sponsor and they have an app called “aby” that helps you as you live with MS. Honestly, I haven’t tried it yet but it looks promising so I’m definitely going to test it out.

My only concern while at the conference is that some of the presenters may have been speaking at a scientific level above that of the audience. However, I believe that the conference overall was a great success.

Still smiling,

C

Edited by Aaron Andreino

The bright lights, the happy childrens laughter. Gathering with family and friends and lots of food. The colourful wrapping paper and trying to guess what each box is under the tree. These things are what Christmas means to many people. But we need to remember that it is not what is under the tree that counts but who is around the tree with you.

Feelings of loneliness and depression are also common. Depression is common often due to the focus on gifts and the emphasis on hosting the perfect holiday gathering. . Others get depressed because Christmas appears to be a trigger to engage in excessive self-reflection and rumination depression can also arise due to the inadequacies of life in comparison to other people who seem to have more and do more.

If life events have changed situations in your life since last Christmas it could be your first Christmas in a different situation that you didn’t necessarily choose.

To a lot of people Christmas means stress, anxiety due to the possibly financial ruin by showing people how much you love them in the form of gifts. Also, family tension during the holidays can cause stress.

As loneliness is common during the holidays I refer to my last blog post touched on something of great significance I believe is the power of support groups on ones health. Research substantiated this, that support groups have shown to provide more positive health outcomes in individuals dealing with disease of any kind. In hearing this, I began to think more about about interconnectedness and wanting to reach out more to ensure that, as we fight.

While dealing with this current MS relapse I’m definitely feeling a sense of loneliness as I’m not feeling well enough to get out and to do what I want. I also find I’m not making the effort to reach out to people maybe as much as I should. I also think maybe it is the chaos of this time of year but not many are reaching out to me either. So friends take take a few minutes in your day and reach out to someone you haven’t talked to in a while and see how they are doing. Such a small gesture can have a profound impact on a persons life. Remember everyone is struggling with something we know nothing about.

Still smiling,

C

Edited by Aaron Andreino

This week I had the amazing opportunity to speak the Atlantic WAMS Gala. About 150 people majority of them women attended this great event which has raised thousands of dollars for the MS Society.

For me to speak in front of that many people is a big deal for someone who was shy and basically a mute for most of her life(not really a mute lol) but public speaking was never my thing.

It wasn’t until I realized there was something bigger than myself that I was passionate about and that I wanted to speak about. This thing was MS. At the WAMS gala I told my MS story.

Having MS sucks. It’s not a big deal until it is and there are things you want to do but can’t because you are too tired. I don’t know why I have MS. I don’t know when a relapse may happen. So I accept it and deal with things as they come.

I thought it was important to speak at the WAMS Gala because I know I’m resilient because I have been through the ringer and back and and keep going. I want to be a leader and a mentor to others who may need a friend to lean on.

I have rearranged my life around MS. It is a bit of a pain. But I’m ok with all of this, partly because I don’t have a choice other than to accept it, but also because I am okay. I try to maintain a positive attitude because that makes me who I am.

I am so thankful for all those who attended, the sponsors and those who donated items to the WAMS Gala. The money goes towards research that can help people like me.

The keynote speaker at the event was Jennifer Gillivan who is the President of the IWK Health Centre Foundation in Halifax NS. She spoke about feminism and making the point as women we need to ask questions. It was truly an honour to hear her speak.

Still smiling,

C

Edited by Aaron Andreino

What is a disability?

The Canadian Government defines a disability qualifying as any severe and prolonged condition that inhibits a person from performing normal and routine daily activities. This definition is broad allowing for qualification of nearly endless number of conditions. (http://canadiandisabilitybenefits.ca/types-of-disabilities/)

To me I did not feel I had a disability until MS started to really interfere with my life. I wasn’t even 30 and I had a severe relapse that put me off work for over a year. I was needing a cane to walk and my right leg and hand were not doing what my brain was telling it to do. Oh and did I mention I’m right handed. Then I got one of these…

I still use this today even though my main symptom is fatigue, it’s very helpful. I can get out to the store and can park close enough I still have enough energy to actually go in and shop for at least a little while. I’m always ready for someone to say something to me ie I don’t look like I’m disabled.

A lot of people are of the belief that you have to be able to see it for the disability to exist. Invisible symptoms are difficult for outsiders to understand.

Our perspective is often limited by our own experience. I say often because there are people whom choose to assume the emotional perspective of another person. This ability I believe is often informed by circumstances in the persons life that has helped diversify their perspective. We can’t only know that which we have experienced. In saying all of this, we must strive outside of our understanding and our own identity to bridge the gap between what we know and that which someone else knows and in doing so understand someone’s else’s reality. If we do so we will begin to cultivate a more cohesive reality.

With the often invisible symptoms of MS it is difficult to make people understand when they cannot see that something is wrong. This often leads to lots of explanations and apologizing for something you can do nothing about, at least it does for me. I find it’s best to try not to be too hard on myself for what I cannot do and live life the best way I can.

Still smiling,

C

(Edited by Aaron Andreino)

It’s the time of ghosts and goblins. The time to find your perfect costume and the best Halloween party. Halloween is an event that is celebrated all over the world.

Most of us are always wearing some type of costume or mask. With a disease like MS where it is essentially invisible we wear the costume of someone who is completely healthy when often times we are not. I definitely do this, I put on makeup before I leave the house to create the illusion I’m feeling amazing when I often am not well at all.

We wear masks for many reasons, good and bad. We use them to hide our identity, or become someone else. Technology has also become another mask that is used to hide behind, to protect ourselves and sometimes to impress and entice others. Fear is a main reason to wear a mask when you are scared of being who you are and being judged for just being yourself.

We all need to work through ways to shed our masks. By not being truly yourself you are holding yourself back from the world and in the long run will limit you potential. By holding back parts of yourself it can be difficult to move on with relationships.

“We Wear the Mask” by Paul Laurence Dunbar

We wear the mask that grins and lies,
It hides our cheeks and shades our eyes,—
This debt we pay to human guile;
With torn and bleeding hearts we smile,
And mouth with myriad subtleties.

Why should the world be over-wise,
In counting all our tears and sighs?
Nay, let them only see us, while
We wear the mask.

We smile, but, O great Christ, our cries
To thee from tortured souls arise.
We sing, but oh the clay is vile
Beneath our feet, and long the mile;
But let the world dream otherwise,
       We wear the mask!

Paul Laurence. Dunbar, ““We Wear the Mask.”” from The Complete Poems of Paul Laurence Dunbar. (New York: Dodd, Mead and Company, )

I personally love Halloween. My house is decorated and I’m trying to decide on a costume that will take as little energy as possible to prepare.

What are you being for Halloween this year?

Below is picture of my Halloween costume from last year.

Here is an update from “Unicorder…Unicorn” blog. I got the results back on my sleep study and I do not have sleep apnea.

Still smiling,

C

So this fatigue is at a an all time high or would that be low.

This gif is a perfect depiction of how I have been feeling lately. My main activity for the week has been sleeping. The fatigue is so bad there is definitely some sort of relapse happening.

Everyday I pick a household chore to complete because I was exhausted to begin with so I was trying to use what energy in the most efficient way. I’m definitely thinking it’s time to hire a house cleaner.

Do you have a house cleaner?

Now let’s touch on Spoon Theory. Many chronic illness suffers refer to themselves as spoonies, because we all are only allotted so many spoons a day to complete the required tasks. Lately I have not had many spoons to use even the most menial tasks. I’m probably at 2-3 spoons today and unfortunately I have appointment that I need to attend so it will be an exhausting day.

How many spoons do you have today?

From Dr. Jennifer Hendrick,Psychologist, PhD, here are some ways to manage your fatigue by managing your energy;

-Do you have to do it?

-What would happen if you didn’t do it?

-It is ok to say NO

-Is there a way you can complete the task differently?

-Try pacing yourself

-Alter your expectations

-Wait for cooler/warmer weather

-Use a different method or approach

-Take frequent breaks

-Alternative between physica and cognitive tasks

-Don’t over book yourself

As you see this post is not very long this time mainly because there is not enough energy for any more.

Do you have any questions or comments about the blog? Have a topic you want me to discuss? Let me know.

Still Smiling,

C

As it was Mental Health Awareness day when I started writing this , I thought it would be an important topic to feature in the blog. As humans we all need to be aware of our mental health. Especially, those of use living with chronic health conditions need to be mindful of your mental health at all times.

Fatigue was so intense this week I was not able to work at all and hardly even left my bed. When I was out it included doctors visits and blood collection. One of the days I had both and there was a space of a few hours in between so I decided to go over to the Public Gardens, located in Halifax and it is the oldest Victorian garden in North America that opened in 1867. (Halifaxpublicgardens.ca)

The gardens were my inspiration this for this weeks post.

It was a good choice as I hadn’t had very much exercise lately and not enough fresh air. Although we are into October with a chill in the air, the flowers still looked amazing. That little bit of time in nature in the middle of the city definitely made me feel better.

Find the small things in life that can bring inspiration for you, whatever that might be. Sometimes just some flowers can put a positive spin on things, even if it’s just for a moment.

There has been much research done on the health benefits of being in nature. Being in nature can help you emotionally and physically as walk helps with such things as blood pressure and and help reduce stress.

Still smiling,

C

(Edited by Aaron Andreino)

When I put on the unicorder I immediately felt like some sort of awkward space unicorn. Since the unicorn is a mythical creature I figured I could create my own.

Why can you always trust what a unicorn says?
They’re no bull.

Let’s talk about MS and sleep.

MS itself can make you tired or fatigued. You also may have another disorder that makes it hard for you to sleep.

Things like insomnia, restless leg syndrome, sleep apnea, and other sleep problems occur more often in people with MS. A large portion of people with MS have sleep apnea.

Sleep apnea can make you feel tired during the day …oh wait so can MS. Sleep apnea raises your risk of conditions like heart disease and diabetes. The right treatment can help you breathe easier, sleep better, and feel more alert during the day. You need all the help you can get when you have MS.

At a recent visit to my GP, I was explaining to her about the severe fatigue that I had been dealing for the last few months. So she was asking how I sleep. She brought to my attention that I was prone to sleep apnea since I had MS.

So to the Snore Shop (thesnoreshop.ca) I went. After filing out an extensive health and sleep form I was set to be set up for the unicorder. As you see in the picture above, it goes around your head and into your nose.

That night when I was ready for bed I put on the unicorder. Once you put it on you have to lay flat on your back with no pillow for 10 seconds while it sets up. Then to sleep I went. It was a bit uncomfortable as I am a side sleeper. It only had to be readjusted on my head once during the night. I do feel I had a unsettled sleep as I was moving a lot as not being used to an apparatus on my head. The next morning I returned the unicorder to the Snore shop and I currently await the results.

I was very skeptical about this as I don’t snore and always seem to sleep too well. It was then brought to my attention that you don’t need to snore to have sleep apnea.

What is sleep apnea?

It is a potentially serious sleep disorder in which breathing repeatedly stops and starts. If you snore loudly and feel tired even after a full night’s sleep, you might have sleep apnea.

Sleep apnea is common in MS because MS attacks the myelin, the protective coating of the nerves. It leaves scars behind called lesions on the brain and spinal cord.

Damage from MS that makes it harder for your brain to control your breathing while sleeping.

Signs of sleep apnea:

1. Snoring
2. Dry mouth when you wake up
3. Feeling tired in the daytime
4. Headaches in the morning
5. Mood swings and irritability
6. Trouble remembering, learning and concentrating

I’ll let you know in a future post the outcome of my sleep test. Happy sleeping.

Still smiling,

C