Coping with Chronic Disease

chronicI value people who are down on their luck yet they keep a positive outlook.  I respect people who have wounds that tell an intense story of trust.  I commend the folks with hurts that run deep as rivers but they keep walking onward.  I cherish broken people because sometimes they’ll give you a piece of their story to learn from.  I highly regard those who have gone through storm after storm but walk out more determined than ever.  I think this is so because I can relate and their walk encourages me and for this I will tell my heart to never give up.”   – Unknown author

I never thought I would be dealing with a chronic disease but I am, so I am adjusting to the many changes in my day to day life.  It’s not easy but it’s just something I’ve had to accept and embrace.

In 2008 I was diagnosed with Relapse Remitting Multiple Sclerosis.  I was going along quite well with it for 5 years with very little disability.  Now my MS has changed from RRMS to Progressive Multiple Sclerosis and the disabilities are coming on fast and furious.  It is certainly changing my lifestyle and that of my dear hubby.  But…we get up each day and deal with it.  That’s all we can do.

As much as I try to stay upbeat and positive there are moments when I grieve my past self.  I grieve my abilities to get from A to B without a cane or walking aid of some sort.  I grieve not being able to spend hours in my kitchen cooking great meals for my hubby and family.  I grieve not being able to entertain like I use to.  I grieve not being able to go out golfing with my hubby and friends.  I grieve not being able to sit out in the sunshine on a beautiful summer’s day.  I grieve not being able to spend the whole day at the mall.  So much has had to change in my life and it makes me sad sometimes… but….on the other hand…..I KNOW THAT THINGS COULD ALWAYS BE WORSE.    I do realize there are people suffering in this world in more devastating ways than I may be and I get that.  I know of some young people suffering with cancer.  I think of all of the refugees from Syria and how their lives are in such turmoil.

I have to count my blessings and be grateful for the good things in my life.  What you focus on becomes the tone for the day.  So if I focus on my disabilities then I live a disabled day.  If I focus on getting out with my walking aids and/or scooter to enjoy a day with a friend or my partner then I have a good day.  It’s a mind set.

Multiple Sclerosis is pretty much an “inside job” so to speak.  I look great on the surface so it’s hard to believe I have a chronic disease until you see me try to walk.  MS has affected every part of Paul’s and my life. I’m living with a chronic incurable disease.  I ask that people accept me for who I am and please don’t judge me because I’m in a scooter or using a cane.  I’m the same person I have always been…I’ve just had to change the way I live my days.  I am more than my MS.  I don’t like to focus on it so I ask my family and friends not to focus on it either.  I love to laugh and still have fun.  But…there are days when the MS is more powerful than my positive attitude and there are days when I just can’t do what I thought I was going to do that day.  There are days when I can’t go where I had intended to go.   I  ask that those close to me just understand that it’s nothing personal towards them.

Having said all of that…..I recently read an article in “Psychology Today” titled “3 Things the Chronically Ill Wish Their Loved Ones Knew”.  It is a really good article and I would like to share some of it and my own take on things,  in my own words.

First off….I must agree with the author and express my deep gratitude for all that my family and friends do for me to help me through the tough times.  I couldn’t do it without their support.  I also belong to a few Facebook forums where people with MS share their experiences and I thank all of those folks for their support too.  One thing is for sure with chronic illness….”one size does not fit all”.  Sharing with the MS friends on Facebook makes me realize that each of us is dealt different symptoms and different limits.

I will share bits of this article that resonate with me in my own words.

1.  The grief we feel over the life we lost may re-emerge now and then….indefinitely.  Chronic illness ranks very high on the scale of stressors in life.  It is considered a grief producing event like other major life losses such as the death of a loved one.  Grieving is a good way to describe the emotions we go through with chronic illness and the life changes it brings with it.  I have lost the ability to be productive as I once was, and I’ve lost the ability to take part in cherished activities, and have lost some of my independence.  The grief I go through over all of this loss arrives unexpectedly.  One minute I’m upbeat and optimistic and then the next minute a dark cloud comes over my mood and sends me into a deep sadness and it can be triggered by the simplest of things.  This grieving process is intense.    There are times in my day where I just don’t want to talk to anyone or be around anyone.  It’s not because I don’t love the person….it’s just that I’m in a place where I can’t make room for anyone else.  It’s not because I don’t love and want that person nearby.  It’s hard to explain and I don’t want my loved ones to feel shunned.  I just want them to understand that I am experiencing a dark moment.  This too will pass.

2.  We feel as if we are letting you down even though you’ve repeatedly told us that we are not.  Basically what the author is saying here is that we may start out our week with great intentions of doing lots of things…going places with family and friends etc. but when the time comes to do these fun things our bodies and our minds are not in the right place to take part and we must cancel.  Having to do this at the last minute makes us feel like we are letting people down.  We apologize for not being up for it and with that comes guilt and sadness.

3.  Being chronically ill can be embarrassing.  We don’t think we should be chronically ill and we end up experiencing negative self-judgement.  Culture tells us all that we should be healthy and agile.  When we are not we feel embarrassed by this. I was embarrassed when I first started to use a cane.  Then I had to wrap my head around needing a scooter to go any distance.  I use to be a fitness buff.  I worked out with personal trainers and kept fit. I can’t do that anymore.  This creates an incredible sense of embarrassment.  I would prefer to keep my illness private but I can’t.  It’s very obvious that something is up with my health and physical abilities.  When strangers see me in my scooter or walking with my cane they always ask me if I had surgery or something like that.  I look perfectly healthy on the surface.    I am also embarrassed to have to ask for help.  It bothers me so much to have to rely on my hubby for housework, helping me with grocery shopping etc.  It embarrasses me to have to rely on friends and family for the simplest things I use to be able to do myself.

So you see, it’s not easy being chronically ill.  There is a lot of emotional baggage that comes with it.  I do my best to try and stay positive.  I read spiritual books relating to positivity and gratitude etc.  And for the most part I do okay with happiness and gratitude but there are times when I just break down and hide in my own grief.  It’s just the way it is.

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3 Responses to Coping with Chronic Disease

  1. Chris September 6, 2015 at 1:28 pm #

    Oh Marcia,
    What a beautifully painful post today. I greatly appreciate you sharing what it truly feels like to have your chronic condition. I don’t know if you still receive our blog posts from http://www.rawsome.ca if you scroll back to January you can follow my diagnosis with cancer, my disfigurement, and what often feels somewhat similar in terms of grief – nothing is as it was or as it seems. In fact my latest post is about grief. I took a break from writing over the summer because I felt my constant musings all about me were becoming boring. What I have noticed is that I experience waves of grief as I realize one more thing has changed. Thank you for your honesty and for taking the time to let others know. That is powerful and means a great deal to us all. May you have a good day today. Chris.

    • Marcia September 6, 2015 at 7:30 pm #

      Thank you Chris.
      I think you and I have a kindred connection….or something like that.
      I prayed for you through each moment of your cancer treatments.
      I wish you peace, healing, love and faith.

  2. Brenda drummond September 15, 2015 at 2:12 am #

    Marci,I just finished reading yr article on coping with chronic illness. Digging deep and expressing yourself in such a way to share yr personal thoughts,feelings and every day is a new day experiences. Reflecting on the past and living in the present with always hope for the future.
    None of us know what lies ahead in our journey through life, the Good, the bad and the ugly. I guess all we can do is live our lives the best way possible,to reach our full potential, whatever that may be at this particular stage of our life.
    I’m sure that you have been told to put a book together.you are a woman of inspiration and have a lot of valuable information to share to inspire others too Looking forward to your next article

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