Since I have been diagnosed with RRMS and told no one can predict the future or severity, I am finding that I am quite tearful and have to sadly say displayed some quite angry behaviour. Before being diagnosed I wanted answers, to know what was wrong so I could get better, now I feel afraid. I want to be strong and I will fight, just wanted to vent I suppose :(
Finding out you have MS is indeed a mixed blessing. The good news is you now know what's wrong with you. The bad news is you now know what's wrong with you :-)
Finding out that you have MS can be similar to the grieving process you go through when someone close to you dies. Anger and fear are part of that process. Elisabeth Kubler-Ross outlined 5 stages of grief. There listed below. Reading some of her thoughts on the process may help. Here is a link to a summary of the five stages.
It's funny, I was teaching the grief stages to some adults earlier this year -- it was the strangest feeling saying the words professionally, and in my head thinking about how much I've been bouncing from place to place in my grieving process since January (everywhere but acceptance).
Being in limbo ... I'm not even sure what I'm grieving yet. Loss of trust in my body and senses, I guess.
As Kyle provided, there are alot of stages to go through emotionally once you know what you are dealing with. I was dx a couple of months ago and have found that the stages are eerily accurate. There is no specific order to them and some may not "hit" you for a while. Its perfectly normal to be in a state of disbelief, anger and fear. Be gentle with yourself for a while. Being a strong individual normally will help you on this journey and this group is a wealth of information and support.
Don't be afraid to reach out to the professionals if you need it. I have and am proud I did.
One of the things rarely mentioned with Kübler-Ross (and the reason her model as it's usually presented is a personal bug bear of mine) is those stages aren't linear. Thanks for linking that Kyle! It's from the horse's mouth and states explicitly it's not linear! You won't get to 'acceptance' and then that's that. No more problems, hurrah!
You can cycle through them many times and in many orders. Some days I'm p-od, others I'm depressed, others a touch of denial. But mostly I'm fine. I guess it's just the ratios that change. Time helps. The longer you live with it and the world doesn't completely fall apart, the easier it is.
I think it's important that K-R's steps are thought to be non-linear. What is most important is recognizing that what you may be currently experiencing is normal, which ever stage at whatever time that is.
For those of us who have been diagnosed, we were told "You have an incurable disease of the central nervous system. At best it will stay where it is now. More likely your abilities will degrade over time." That's a pretty big nugget to digest :-)
As to Professionals, I spent a year post DX talking with a psychologist. It was a huge help!
Fear and anger are normal. I felt both when I was diagnosed with MS. I pictured every symptom of MS happening to me. I waited for ON. I waited to lose the use of my legs and my bladder in public. That was in 2009. 4 years later I am about the same as I was in 2009. I thought MS was the worse thing that could ever happen.
In 2010 I found out I not only had MS but PPMS and I had had it since age 2 so I had untreated MS for over 40 years before diagnosis.
In 2012 I was diagnosed with stage IIIc Ovarian Cancer and a rare form called Clear Cell which usually does not respond to chemo. Oh and I am BRCA 1 positive so I have a 90% breast cancer like Angelina Jolie. A year later I am fine the chemo did its job. My Cancer marker just tripled and I am not scared.
I am though being scared of things that may or may not happen to me. I am going to live my life.
In 2009 I went up in a hot air balloon and hiked the Appalachian trail.
In 2011 I stared horse back riding. Which I am still doing.
My life may be short so I am making the best of it.
I get scared and angry and sad but I do not have control of a lot of things and I just do not worry about all the uncertainty.
Ghost.. I think I am where you are. I have been told that I will be dx with ms when I see the neuro in a couple weeks... I think I am ok with that. Sometimes.
But I have moments... The fear is worst... I woke one night of a dream where I could not hear nor see.. I also fell asleep last night with a few tears ... I breathed easier though when I thought it could be worst .. I could be saying goodbye to my 3 children.... Instead I look to a different future but still mine :)
Like I said I am not diagnosed yet... I am trying to not be ms this week... I am me and I have the possibility of "having" ms . I am sure I will have the steps to go through all over again when the real words come at me again...
I also think denial is a precious motion for us... It helps us process the information without accepting it all at once... Embrace each step they are all needed! ... And please remind me of all this in 2 weeks time :)
I have to agree with most everything written here. Been through each of these stages, then back, and again, again. Oh, all but the dx; I still have Mystery Sickness.
I have long felt that I feared nothing, really, in the long run. I know where I'm going. Lately, though, a stop or two on the journey has made me realize that there could be really bad ramifications for others (Mrs. in particular, but many others) if I would become more disabled than I've been so far. That is something that I think I fear.
When I was in an auto accident about a year and a half ago, I wasn't afraid of dying, even though I saw it as a very distinct possibility for a second or two. However, I thought instantly that I wasn't ready to leave Nancy here alone, for her sake, as I don't believe she'd deal well with losing me at this stage of our life together.
Besides death, though, there is a great deal possible -- from MS, from heart disease, cancer, Alzheimer's (lost Mom to that), etc., etc., ad infinitum -- from which I could suffer, but from which those about whom I care might suffer at least as much. I don't fear death, and I feel I have enough experience with pain that I could handle whatever I need to handle (especially with modern pharmacology), but the potential for disability to complicate life is something I really don't want to think about.
Therefore, I won't. Nearly everything about which we worry never happens. None of us can see the future, so I've decided to live life with my future in God's hands -- which is where it was to begin with, anyway. If I need a white cane someday, I'll get one. If I need to use a walker, I'll use a walker. I'm not shopping for either one yet, though. Too much else to do in life.
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