Last updated: September 2015
Yesterday marks one year since the first IT occurred. I never imagined that IT would lead to a diagnosis of MS.
It has taken me 10 months (since diagnosis) to realize the IT is not going to go away.
Mmmm … Make that accept. To be perfectly honest, accepting IT is easier some days than others.
Most of us will eventually experience some sort of grief – job loss, end of a relationship, death or illness. The event doesn’t matter. The stages are the same.
DENIAL – ANGER – BARGAINING – DEPRESSION - ACCEPTANCE
Grief.com says the stages “are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order.”
I like the way Grief.com describes each of the stages. The descriptions are clear and easy to understand. I encourage you to visit their website for full description.
Grief.com lists this as the 1st stage.
“It helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. … We try to find a way to simply get through each day.” [ … Denial]
This is exactly the way it was for me.
I was in a state of shock. I couldn’t believe – and admittedly sometimes still cannot believe – I have this HORRIBLE disease.
As much as I tried to be brave, I was scared!
You see, when I was nurse I worked in a rehab hospital. One of our patients was a woman in her 30’s. She had MS. She was wheelchair bound. She couldn’t do anything for herself – eat, got to the bathroom, get dressed. NOTHING. She was completely dependent on someone else.
When the diagnosis was confirmed, my mind immediately raced to this memory.
I didn’t want to be like that!
The easiest thing to do was to deny the diagnosis. The denial did make getting through the day a little easier.
What’s the saying … if you pretend it’s not there, it really isn’t there.
Yep, that was me!
Grief.com advises, “Anger is a necessary stage of the healing process.”
"The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself … but also to God."1
At first, I wanted to – and did – blame God for allowing this disease to take root in my body. ‘Why, God, why? Why would you allow this?’
[A thought just came to mind. When things go wrong we instantly blame God. Yet, when things are good, we forget to thank and praise Him.]
After a rather tough day, a dear friend suggested I pray “Lord I would love for you to take this away from me … but if you won’t, give me the strength and give me the power ... if this is something you want me to have for whatever reason, if this is what my hand is that has been dealt, show me how to use it for Your Glory, show me how to navigate through this.” Thank you, M, for helping me realize God may have a plan that is yet to be revealed.
As the name of this stage implies, we attempt to BARGAIN with God to make things okay …
‘Dear God … I’ll blah-blah-blah, if you’ll blah-blah-blah’.
I honestly don’t recall moving into this stage of grief.
(For more information regarding this stage, please see The Five Stages of Grief on Grief.com.)
This one I remember!
Depression is a form of mental illness. However, the depression experienced in the grief process is a perfectly natural process. "It is the appropriate response to a great loss."1
Loss evokes great sadness. Sometimes that sadness can leave us with a feeling of not knowing what to do … we are in a “fog”.
That fog hung over me for quite some time.
I subjected myself to isolation … I didn’t to go out of my house for days … I slept – a lot! Sleeping kept me from thinking about it. Remember … if you pretend it isn’t there, it really isn’t there.
Grief.com tells us, “We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one.”
That is so me! I moved in and out of denial, anger and depression so many times I can’t even count! Fortunately, I spent less and less time in each stage with each visit.
Staying active and occupied has helped tremendously in keeping me from slipping back into this stage.
According to Grief.com, “This stage is about accepting the reality … and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live.”
Navigating through a loss – job loss, end of a relationship, death or illness – is not easy. Anyone who says or thinks otherwise is in DENIAL!!!
For me, acceptance comes in the realization that I need assistance. [Not easy for me … the one who has to “do it all”.]
My gait and balance are still affected, so I need assistance. Walking through the store or mall can be a challenge without some sort of support of a shopping cart or my husband’s arm.
The energy expelled in my morning routine is enough to wipe me out for the day. I have to pace myself.
No more standing at the mirror to put on my makeup. That must be done sitting down at a table. [I haven’t quite figured out how to do my hair sitting down. That is still a stand-up activity.]
Standing to put my pants on may lead to landing on the floor. Sitting in a chair to slip on pants is a must.
It’s flats and sneakers for me! I’ve never been much for sneakers. I feel much shorter than the 5’1’ that I am when I wear flats. Neither are my favorite! I long to slip into my favorite pumps! I pray someday I will be able to wear heels again!
Acceptance also comes in thinking about everything I may encounter while out and about.
I think about the location and what is available in the means of support. Are there shopping carts available? Are there hand rails (or wall) that can help stabilize me? Are there stairs? How far do I have to walk from my car to the entrance? Will I need to carry anything?
Several months ago, I had to “run” into the grocery store. I only needed a couple of things, so I only grabbed a little basket. By the time I walked through the store – the items I needed were on opposite sides of the store – and got to the register I was a complete mess!!! I was bumping into things and could barely walk! Since then, I ALWAYS take a cart – even if I only need one thing.
I’ve accepted I need good rest. I strive to get at least 7 – 8 hours of sleep.
I’ve accepted I have to change my eating. It’s taken me a little while to incorporate this change into my life. Remember that denial and anger thing? It kept me from making changes to benefit my overall health. Now, I am omitting some things from my diet and adding new healthier alternatives.
I’ve accepted I have to be my own advocate. I’m still navigating this one.
I’ve accepted my life will never be the same. While I still may not fully understand the “why”, I have accepted that the IT is now a part of my life.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: