Jan 25, 2017

Mental Health & Parkinson's Disease... #BellLetsTalk

Well today (January 25) in Canada an initiative called "Let's Talk" where Bell Canada helps end the stigma around mental health.  It supports research, helps improve access to care ensuring psychological health & safety.  They donate 5 cents for every call, text or social media using #BellLetsTalk in 2016 6.3 million was donated. 

So I thought today very fitting for this post that has been looming in my head for a while now.  Too fearful of people's opinion's to share it.  It's really heartbreaking how something as important as mental health, but the reality is people are embarrassed of it, they feel depression or anxiety or anything related to mental health that we are struggling with makes us weak.  I say us because I struggle with it too, I never did before PD and although I like to think I didn't think negatively towards it or people who suffer; I'm guessing that with my own fear and inability to share that maybe I did.  I've said before there's the odd time I find it very difficult to write a post, that my goal of this blog that originally started as a journal to get things off my chest was to be fully honest.  That was before I decided to share it and before it was ready by as of today over 62,000 people around the globe.  Now with often 10,000 readers a month that's a bit harder to be honest about the really tough stuff nobody wants to discuss or admit.  Perhaps more so due to the friends & family in my own community that will read it, who I don't let know.  So yes I am seeing full on through my own eyes the stigma around mental health sometimes one which might simply be created by ourselves in our own heads, but there has to be an underlying reason we do that.  So today I will power on and keep writing this difficult story.

Many would think getting diagnosed with Parkinson's would easily be enough to become depressed.  And yes indeed of course that happens.  However in addition to that many people get depression, anxiety and issues with apathy as a symptom of the disease not because you are depressed you got it.  Not unlike myself, who never had an anxious bone in her body and now I suffer with social anxiety part of which is a fear of people seeing my symptoms which sounds ridiculous because everyone knows I have PD.  I try really hard not to but I do withdraw socially overall which is common.  I go out less, I interact less, I stress more.  The biggest challenge with this is the more you withdraw the less your friends and people you care about will bother with you.  Especially if you aren't talking and honest about why you're often saying no to an invite etc... The phone will ring less by a friend who used to call often, the door won't get knocked on as much and then the vicious cycle continues.  Often people will look at this as a two way street and have the attitude of "well they never call me either anymore" but if they are struggling with such things they likely won't because they're withdrawn.  If you're reading this and you are said friend, family member etc... with a loved one with PD (or not) that this is hitting home with, stop letting life get in the way, we are all busy make time for people you care about.  ASK how they are doing. 

Now, deep breath.... I see a psychologist once a week.  Dear lord I just said it.  Yup that's right, I started to go to one back in November.  I still feel embarrassed when I walk into the building and have the thought in the back of my head "I wonder if anyone I know will see me going in there".  When really I should be proud of myself for going and seeking help if I need it.  But that's just not the way we think in this day and age in our society.  Why do I go, you are wondering?  Well in a nutshell I had to give up my career in August of 2013 because I was unable to do my job.  I wasn't diagnosed yet and just assumed that the doctors would figure it out and I would return to work.  I worked hard for my career and I loved it.  When the diagnosis finally came, treatment started and it was evident that although life changing on being able to get up and walk etc... that my right hand didn't hold a pen well if at all, fine motor skills were only semi ok for very brief periods of time and so on... It was official that my career had been taken away from me because of this disease.  The blow of being diagnosed wasn't something that caused a great depression because after 15 long agonizing months it was a relief to know.  Giving up my career was a blow however and I struggled greatly with it.

However, because of struggling with said loss of career I tricked myself into believing that I had dealt with this loss.  When in reality I did not deal with it at all, I simply jumped in feet first and replaced it with being a stay at home Mom.  I only had one home with me, my little Izabella, as her big sister Samantha was gone to school by then.  If someone would ask what I did for a living I could say that, I didn't have to say well I have Parkinson's and Dystonia and I'm on long term disability.  Although I was never the Mom that had the wish of being at home with my kids despite my love for them I consumed my life with my new "career".  And then............................................  the day came, this past September when my baby got on the school bus with her big sister and I watched them drive away to their adventure for the day.  Then I turned and walked back up the driveway admittedly tears streaming down my face (which was fine, I also did with my eldest, it's emotional to see our babies grow up) and I walked back into an empty, quiet, lonely house.  I remember thinking that day "what the hell am I suppose to do now?"  To be honest I'm still trying to figure that out, hence going for counselling once a week.  I'm trying to get the tools to deal with my anxiety and to cope with feeling like I have no purpose and trying to figure out again what that is.  I'm trying to learn to be honest fully with all the changes and things Parkinson's has done both to me and for me and see things in a different perspective.  I go to try and figure out my way moving forward.

Did I come to the decision to get therapy easily?  No, not at all.  I thought about it on and off for all of September and October always making excuses over why I didn't need to go.  Always the stigma of what people would think looming.  I left the house less, I would buy everything down to laundry detergent online so I wouldn't have to go to a store.  I would have days where I would not shower or get dressed other than to take the kids to their activities or the usual things I did/went to.  I said no to invitations a lot and subsequently those are less and less.  I didn't answer the phone often and then it rang less.  I felt like I had no impact in this life, no purpose and that I didn't know what I was suppose to do moving forward.  Thankfully I'm now starting to figure that out again.  Thankfully I didn't let it persist for very long, I realized quickly that staying in the house, not getting dressed or showering was NOT a good thing and not beneficial in any way.  Seems like a no brainer but if you are struggling it's easy enough to happen.  So I started with my calendar.  I scheduled something every day of the week with the exception of Friday.  Something I had to do or attend every day that would force me to get dressed and out of the house.  That in itself made a big difference.  If you are reading this and this is hitting home to you, I urge you to talk to someone AND to schedule yourself.  It made a huge difference in how I felt by getting out of the quiet, empty house even if it was just for an hour.  And then going to talk to someone who doesn't know you, has no opinions of you or your life and is completely impartial is a great thing to do.  We can have people that care about us give opinions often,, suggestions, ideas etc... their intentions are good, no doubt about it.  But they do not understand what you're going through no matter how well you try and explain it and then other things will factor into it like your own relationship quirks, opinions etc...  This aside from embarrassment is another reason that virtually nobody knows I've been going for counselling. 

I did share at our last local support group that I was going to a psychologist and even though these people are like my family and I'm likely able to be open with them more than anyone in my world I felt like there was a cement block on my chest as the words were coming out of my mouth, I was consumed with a panicked anxious feeling saying it out loud.  Why do we do that to ourselves?  Let's STOP doing it.  Let's not be ashamed when we are struggling emotionally with something.  Let's not be embarrassed if we are feeling anxious or depressed.  Let's not bottle everything up because we are too damn worried about what someone else thinks.  But sadly we live in a world of gossip and judgment and we have allowed ourselves to be victim to that and ashamed.  I have no doubt there will be a text, a Facebook message, a conversation in person or on the phone with people I know about this blog post.  "Did you see Natasha's blog, she's going to a shrink?"  It'll happen, some will likely be in the context of wow I thought she was so well I would have never thought she needed a shrink... where as the more 'judgy' types will have the she's crazy she should have been going long ago.  But you know what, neither of those matter.  It doesn't matter if someone see's you walking into the office of a mental health professional either.  If you are feeling low and you can't get out of your own way and you can't get past the funk you are in, to hell with everyone else and what they think.  Go get help!

So today I thank #BellLetsTalk for doing their part in spreading awareness and ending the stigma.  Today I feel terrified & brave all at the same time.  But I'm gonna focus on the brave part. I'm gonna enjoy this big sign of relief and feel the joy in being fully honest, not embarrassed and REAL.  Because life isn't always sunshine and rainbows and that's ok!  Let us all be brave!

Wise words by the great Muhammad Ali, who had Parkinson's!
Don't surrender, as the inspirational Michael J. Fox says....
 


If you're in Canada and on the Bell network send as many texts as you can today, tweet, share but most importantly TALK.  You can even put a custom frame on your social media posts..  Visit www.letstalk.bell.ca for more information.

11 comments:

  1. You are wonderful. Thank you for sharing. I have an invisible chronic illness and I an dealing with some of the same issues. My pain clinic lists me as borderline depressed and anxious but after reading this is think I would benefit from more mental health help. Thank you

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  2. Thanks for the read Nat. Well written and beautifully expressed. This campaign needs a two way street though..LETS TALK & JUST LISTEN <3

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  3. Wow Natasha!! Thank you so much for writing this post, I am sure it was difficult because I had the same struggle, I knew I needed help, but I was embarrassed, but I did it, and it has made all the difference!! You are an inspiration to me!! #BellLetsTalk Melissa Gillam

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  4. Natasha, you may have had to leave your earlier profession, but you are showing your talent and future in your ability to write your thoughts like in this blog. It helps you and everyone who reads your words and thoughts. Very few of us don,t feel these emotions in our lifetime and when I was trying to adjust to being divorced over 20 years ago, I felt what you are feeling today. I did try to become a recluse, but thankfully my family and friends didn,t allow that and with your words here, I am sure you will be that same encouragement to people you don,t even know. Continue to write your thoughts for yourself and your journey as it helps and encourages others in their journeys. Bravo, girl!

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  5. Natasha ... I've said it before and I'll say it again ... You ARE an inspiration to me and to so many. Those that you do not inspire are NOT worth your time or effort. Thank you for being so straight forward about your struggles and continue to direct your focus on Christ and know that He, who suffered on the cross for all of the world's sins, understands our suffering. He is no stranger to it. You have become a spokes person, if you will, for PD and people with other invisible illnesses and it helps them not feel alone. That is what depression does. I have it. I have never been afraid or embarrassed to say or share that, but then again, I come from a different part of the world and culture. Even so, I too, have fallen into the traps of isolating myself when I am depressed, it's part of the symptoms. As long as I'm on my meds I am a happy camper and do not obsess over things or blow them out of proportion or lack the feeling of joy in my life. Not to minimize issues that have happened or can cause stress in a person's life, but I am able to handle them in a more rational state of mind. I too have had therapy many times to help me sort out my thoughts and feelings because for me the depression makes me loose focus and attention. By speaking out we make it easier for others who are suffering from the disease to see and know that they are not alone. I wish more people would seek the help they need. Life would just be, not simpler, but more manageable. I've always seen it as a responsibility to make sure I am ok so my family can be ok too. When depression or any other illness shows it's ugly head it affects our loved ones just as much. Maybe in different ways, but non the less. So if you have diabetes you will use your insulin, if you have cancer you will go for treatments, if you have thyroid issues you will take meds and for all of the above will see your doctor regularly. Well, why not for depression too. The longer you go with out treating it, the worse it CAN get. I applaud you Natasha for your bravery. It is a pleasure to know you, even if it is through social media. If ever you'd like together to talk, I'm here. Mariel <3

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  6. That was amazing, just like you. XOXO Donelda

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  7. Another beautifully written blogpost, Natasha. Very moving and courageous. I'm going to share this with my blog's readers, if you don't mind.

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  8. I so appreciate your posting. I love that you put it all out there and you write what's really in your heart and your mind. I've tried logging a few times. Try to video blog. But it's really hard to be completely open and honest, and also to get all the thoughts and feelings out there. Whenever I read your post, I think to myself well she's done great job of describing it, so I feel less pressure to write. I think I'm better in person and I am watching but I just want to say that your blog, in particular, really has helped me a lot just by knowing whether someone else who is going to the depth of thought and awareness and struggling with being open. Easier With people you don't know reading it than to people you do. Each person to talk about the depression enables the next person to talk about theirs. I know a lot of people with Parkinsons Disease. I don't know anyone of them who does not have anxiety and/or depression. I wish there was another medical term for "depression" that has less stigma. Like "serotonin imbalance disorder". We tend to go out one more at our best and keep out of sight more when worse. For me, not so much of humiliation but I don't want other people to measure my time and I feel like I'm scaring some people because I was the role model for doing well with Parkinson's. I can see it on people's faces – like if it can happen to me, no one is safe from the decline. I love that you say it all proud of yourself for the impact your blog has on me and many others. Thank you!

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  9. Once again you've taken something negative (your diagnosis; your job loss; your depression; your need to see a shrink) and spun it into a golden positive (a powerfully written blog post that thousands of people will read; a clarion call for society to change how it views depression, anxiety, and related mental/psychological illnesses). I wish you the best always. FYI in a week I have an appointment with a psychiatrist, at the urging of my regular neurologist. My anxiety levels were so severe that she wants me to see a shrink, too. I learned that anxiety and depression are not just natural responses to receiving a diagnosis of PD, but also the result of changes in the brain....I think your advice to always schedule something for yourself every day is terrific. I wish I lived closer to you because it would be fun to hang out and do things together. ... Finally, I enjoyed your Facebook clip of you playing the violin. It says so much about forging ahead. Again, best wishes always.

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  10. thanks for this Natasha - I'm by your side...

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  11. thank you Natasha - I've been there too, sought help and am positive now and am at your side all the way...

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