How Life Has Changed

21 Saturday Jun 2014

Tags

acceptance, daily life, expectations, ms, multiple sclerosis, spoonie, stages of grief

Back in the day (ie last year), I used to spend time with others talking about a book I’d just read or a movie I watched. We’d basically talk about meaningless stuff…and at the time it seemed to matter. W and I used to love to travel to retail shows selling our soap and chat with people spending hours outside. We would tend the garden or go for walks.

Flash forward to now and I’m amazed at how my life has changed. I find myself in conversation with folks and I’m not sure what to say. If they are fellow MS’ers, we chat endlessly about doctor’s appointments, our favorite MRI machines, wait times, new treatments, and infusion centers. Non MS’ers? I honestly draw a blank. I can still chat about whatever TV show I watched recently or book I just read, but my reading list has adjusted to include a few more health-related books then I would like and any TV show discussion tends to morph as health enters the picture as in “well, after my last infusion I was on the couch for two days and watched an entire season of X” (<– insert favorite show here). I’m afraid to do most retail shows now because I never know when I’m going to hit a certain level of exhaustion that just requires me to stop and I definitely can’t do much outdoors since I have developed the wonderful ability to overheat at a moments notice and tend to have trouble functioning when it happens.

I feel like a person who is losing touch with reality. Or maybe I feel like those around me have lost touch? I would like to say that being diagnosed with a chronic illness brought new meaning to my life, and some days I honestly feel that way, but other days I just feel spent and a bit lost. Like I became old overnight and left all the people my age behind. I just don’t know how to relate to them in the same way anymore. It sounds awful (and I promise I am not an awful person), but their complaints about relationships, daily life, and work can make me angry. They just seem trivial when looked at from a different vantage point.

I know all my anger and frustration has nothing to do with the person doing the talking and everything to do with me and my choice to interpret their words in that way. I know it is unfair of me and I imagine it is simply my grief once again manifesting itself in my life. I recognize it as something I need to work on and I hope that as I continue to improve illness can take a backseat in my life and I can return to the banter of daily life with a real, legitimate smile on my face.

For others with chronic illnesses who have been through this battle, does it get easier? Any tricks to that may help to ease me back to the other side?

Defining Acceptance

09 Sunday Feb 2014

Posted by juliawillbefine in Daily Life

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Tags

acceptance, ms, multiple sclerosis, stages of grief

Since my last little setback in January, I have started seeing a counselor. My hope was that he might be able to assist me in coming to terms with what is going on with me. I want to be Julia. I don’t want to be MS and I am afraid that is the direction in which I am heading. I also don’t want to be “woe is me” all the time. It is tiring – for me and for all those around me. It is not helpful, and it is definitely not healthy. So how do I do that? In my mind, I needed to find my way back to acceptance.

Most people are familiar with the Kubler-Ross model aka the five stages of grief that she wrote about her in 1969 book, On Death and Dying. The five stages as she described them are denial, anger, bargaining, depression and acceptance. Kubler-Ross later suggested that these stages to be applied to any personal loss whether that is a divorce, loss of a job, or, as in my case, a chronic illness.

To be clear, these stages are not necessarily experienced in order. Folks jump around a bit until they (hopefully) reach the end point of acceptance.

I’ve experienced my share of each stage:

Denial – I wrote off most of my early symptoms and created rational explanations for them even after they started to pile up. Then I expected one of the doctors along the way was going to laugh and say “ah, we’ve found a simple answer for your problem!” I would only need to take a pill and then return to life as I knew it. Neither did me any good other than protecting me when I apparently needed it.

Anger – This is a hard one for me as I rarely get angry and can’t tell you the last time I yelled about anything. All the same, I have spent time frustrated and punched my husband’s arm more than a few times (with his permission of course) as I tried to process through my thoughts.

Bargaining – When I was going through the diagnostic process, I was laughing to a friend that I would never have thought MS was the diagnosis I wanted, but when faced with a choice of MS versus NMO, I felt more knowledgeable and more comfortable with the idea of MS. That time period is a bit of a blur for me, but I imagine I had many conversations with myself that involved “if it could just be MS….”

Depression – This is the stage in which I am afraid I am stuck. I am sad. A lot. I go through my normal day the best I can, but sometimes out of the blue I just loose it and will start crying. This happened early on, but I chalked it up to the steroids and the shock of everything that was happening. I seemed to have returned and can’t quite extricate myself.

Acceptance – This is the stage that eludes me. My counselor challenged me this week to define what acceptance looks like to me. I’m still not 100% sure, but I know that it has to come with some degree of emotional stability. It would be nice to think that it comes with a bit less fear as well. I would like to return to my day to day life with minimal changes and be able to function. I understand that some things may need to be adjusted and I would like to learn to live with those changes without feeling guilty or embittered by them. I want to feel confident in my choice of this blog name. Every day won’t be great and some days won’t even be good, but ultimately I want to know that Julia Will Be Fine.

There was a recent viral Facebook post that I borrowed to post here as it came across my feed just as I was working through this problem in my head and it seemed ever so fitting.