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The Sun keeps Rising and Setting

20 July 2015

I had been planning a post about peoples reactions to my diagnosis, though it would seem that this decided it wanted to come out more.

The person standing there looking at me, physically looked like the same person I knew, though there was something behind her eyes. Self-doubt, pain and anxiousness stared back at me. All things I had believed that I had dealt with a long time before, and yet here I was watching them return.

I had always connected grief with a loved one passing away, or breaking up from a relationship. That idea of not ever seeing them again, losing a physical being. That idea was greatly challenged when I was diagnosed, as I was to come to realise that you can grieve so much more than losing others. You can also grieve losing yourself.Everything that I thought I was going to be, the ideas and dreams I had for my future were now clouded with uncertainty. Self-doubt creeping into every crevice of my being, a self-doubt that was too easy to accept as how could I walk forward when all I thought to be true was now in question.

There was denial, oh yes I held onto that 5% chance the health professionals were wrong, even to the point of offering other possible diagnosis and diseases to my neurologist at every visit. Even though the little voice in my head knew it was MS, the denial part of my grieving held onto the ridiculous irrational hope it wasn’t. Then there was the anger, so freaken angry and frustrated! At everything! The little things that come with MS, like the forgetting a name, or putting the milk in the cupboard, to the bigger ones like falling over, dropping things, and being so damn tired all the time! Oh yes angry!

I flipped between the two for a very long time, all while trying to get on with life. The world doesn’t stop and wait for you while you sit down and process your way through the grief. No you either hold on and keep your head above water as well as you can, or you drown in the emotions that are invading your brain.

The grief wasn’t only mine either. Receiving a diagnosis of any chronic illness is not just felt by the patient alone. I liken it to throwing a stone into a pond. I was the splash, directly affected by the Multiple Sclerosis, the closest ripple was my husband and then my children. As the ripples ebb out till they become flat water they hit everyone attached to my life, family, friends, even as far reaching as those I was just meeting. Yes I wasn’t the only one who had received MS, everyone who I cared about and cared about me had also received the diagnosis of MS in their lives. They too needed to grieve the person they knew, and find a place to accept the person that stood before them now. The person who now walked life with an unpredictable, incurable disease, which was changing the person they knew irrevocably. It was with their help, and that of a few counsellors along the way that I did finally reach acceptance. Oh I don’t accept that it is ok for me to have MS! Though I accept that it is a part of my life, and I carry it with me everyday, whether I like it or not, it is a part of my new identity.

Acceptance of the new me has allowed me to reset my expectations of the person I am, start setting myself new goals and aim for bigger and better dreams. It is a forever changing me, and here is the punch line. It took my getting MS to realise, that we are all forever changing! Disabling condition or not, we are in a constant flux of change. With every new experience we have in life we change, and this will continue for the rest of our lives.

Yes there are still days, many more than I admit to most people, where I am thrust back into the sea of grief. With every new flare, or relapse I am right back there. I allow myself those bad days, there is no shame in grief and we all have those days, and then I get up the next day and start again. Everyday bringing a new experience in this adventure that is my life. I am also the first one to put my hand up and yell (or in the age of social media post a status) I’m not ok, so that my support system can step into place.

Now I focus on being the best version of me, the forever changing version of me. Reminding myself in the hard times that I am not alone, there are thousands of others walking this road too.

I can do this! You can do this! More importantly we do this together!

 

If you are struggling with grief I urge you to seek help, there is light at the end of the tunnel, as dark as it may seem now, it is there.

Lifeline - https://www.lifeline.org.au -13 11 14

Beyond Blue - https://www.beyondblue.org.au - 1300 22 4636

Comments (13)

Thanks for this post, Amber. You've put it so well. The sun keeps right on rising, and there's really no good option but to be the best version of ourselves that we can each day. Not always easy, but a great approach!

What really peed me off was the "friends" who quickly decided I didn't exist anymore. People who I worked with for decades, suddenly forgot who I was. That was one of the most depressing things, apart from realizing all the plans I had made were just NOT going to happen.

Hi Lisa, thank you for your comment. The reaction from others was a complexing time for me also, and there were times when I just didn't know who was in my corner and who wasn't which just adds to the grief and depression that comes with the package. This is definitely something I plan to talk about in another post. Smiles Amber

Amber, I love this post. Thank you so very much for sharing. I too went "even to the point of offering other possible diagnosis and diseases" in an attempt to find another answer. I too have started setting different goals and changing priorities. And yes, dealing with emotions! So hard when you just don't know where to start!

Hi Sarah. Thank you for your comment. The starting point was a hard thing to find, something that worked for me was just living in the day, not focusing too much on what was or wasn't coming next. Eventually I started to feel brave enough to look ahead again. Tentatively. Smiles Amber

Yes, when all is said and done, we can only try and be the best version of ourselves, time stops for no-one, the world keeps on turning. Thankyou!

Hi Amber great post. I was so glad to hear that both you and Sarah had presented alternate diagnoses to your neuro's. I don't think this is denial at all. MS is not really a diagnosis as such. It is essentially a collection of signs and symptoms that aren't other known diseases. Even the name we give it refers to the scars in the CNS, but the scars are not the disease process itself. One author has referred to the scars as the 'tip of the iceberg'. The other thing is, we assume our neuro has excluded all the correct differential diagnoses that they should be considering, but this may not be the case. There are several disease processes that mimic MS, and which are imminently curable if caught early. If a neuro hasn't considered those differential diagnoses, the patient could be at risk. Do all neuro's follow the same diagnostic protocol and is it world's best practice? Could be a lucky dip! To my mind, a thorough diagnostic protocol that involved the patient and carefully explained what was being investigated and why, (with a take - home paper record) would not leave people wondering if they may have another illness. Thanks for raising this, because this is somewhere that I think the medical profession 'could do better'.

Hi Lawrie. Thank You for your comment. My presenting other ideas to my Neuro came after my diagnosis. The reason it too so long for it to be diagnosed was because he was not willing to just label it MS until he had ruled other things out and also I met the criteria. Certainly wasn't flippant about that. For me it was my own denial that although I saw it coming that we had reached it, and I was as ready for it as I thought I was. Kind of caught me off guard, which is why the grief hit so hard.

Thanks for articulating what I was thinking and how I constantly ebb and flow between grief and acceptance.

Hi Amber - love your post & your honesty. As someone who doesn't have MS it certainly helps me understand the edges of MS. I hope that it also helps other people that know people suffering with MS understand it too. :-)

Thank you Amber for your honest & opened post. I was diagnosed in 2010 and I thought that I had dealt with my diagnoses, but your words have made me sit here and retook at my feelings and emotions that have come up. The way you said that it's ok to grieve for the life you had before MS resonatesd with me. Thanks you again Amber for sharing and making me look at my life and what makes me happy and the person I once was! xox