Suddenly So Surreal

When you’ve lived with Chronic Illness for a number of years, at some point, you adjust to a new way of living. You eventually find a new norm.

While you might expect a few highs, lows and some disease flares along the way, generally life evolves into a settled and comfortable pattern.

Until it suddenly, without warning, doesn’t anymore!

Sometimes after years of living a new and well-adjusted life, something changes. Something that causes your disease to suddenly seem so surreal.

Something that threatens to once again create a world of chaos and disorder.

Something that will force you to find another new norm.

Surreal and Scary

My rare bone disease is the biggest concern in terms of progression and worsening disability. I have known that since the outset.

It’s insidious. It attacks without warning and when it does, it breaks my bones and refuses to heal them. If it doesn’t break them it destabilised them, causing excruciating pain as the bones die.

I thought I had a good handle on the nature of my disease and in general I do.

However, the latest attack has been so severe every aspect of my life needs to be reviewed.

It’s surreal and I need to admit to myself……it is scary.

In the space of 2 months I’ve gone from being chronically disabled, using crutches and a walker to mobilise, to severely disabled, with the very real possibility of being permanently in a wheelchair. Permanently unable to do some of the simpler day to-day basic care tasks without help.

My pain levels in my lower spine are currently unbelievable. They are beyond anything my broken femur threw at me. The consistent throbbing is almost audible.

So far conservative treatment is failing and even surgery may not deliver the desired results.

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Big Decisions At Every Turn

Big decisions are confronting me at every turn.

I know I will find a way to adjust. At the moment though I am being swamped in a sea of surrealism.

My issue is the life my husband and I currently live, doesn’t fit a wheelchair bound scenario.

Our home is all wrong for a start. We need a low set home and it needs to be a little smaller and manageable.

The thought of making such a huge change in our lives, while I’m looking down the barrel of more surgery and a long recovery, is so daunting. Even without the prospect of surgery, my pain is just so constant I need stability, not change, to help manage my situation.

I’m not physically capable of doing anything to help with a house move. I can thankfully organise anything that’s thrown at me, so I’ll be focusing on using this skill to facilitate any necessary changes.

Before any of that can happen I have to shake off this surreal slump I’m in.

Shake It Off

Don’t worry, I’m not about to break out in a Taylor Swift song.

I’m going to work through a process of how to shake off this surreal situation and bring it into the world of realism. Better still, I’m planning on making my new reality my new norm, as quickly as possible.

So here’s my plan:

  1. Allow myself to feel the shock and horror of my situation. Denial of these feelings won’t help me move on.
  2. Take a little time out from normal activities to digest what’s happening to my body. My brain needs to catchup with the physical manifestations of my disease progression.
  3. Talk with my husband about how I’m feeling and what these changes will mean for both of us. Talking out loud helps to make a surreal situation more real.
  4. Begin talking to family and close friends about the changes we are facing.
  5. Start taking practical steps towards changes required. Researching various options is a good starting point.
  6. Make lists. Writing down the details of required changes also helps make a situation more real. It’s gives a sense of ,”ok we are really doing this”
  7. Rest. When life throws us challenges that rock our world, we need replenishing. Rest is vital to keep as positive an outlook as possible. That doesn’t necessarily mean sleeping but just doing something that helps you relax. Something that centres you and reminds you that some old norms will still remain.

Feeling A Little Better

When life suddenly seems so surreal, it’s not going to just as suddenly become all ok.

Shock is involved and that takes a little recovery time. The grief process is revisited yet again.

Little by little you will begin to feel better. A small decision will be made that is a catalyst for a larger change. Before you know it you’ll be on a journey towards a new norm.

So as my sea of surrealism keeps washing over me, I’m going to remind myself I have a good track record of adjusting.

I’m going to remind myself that I have a solid simple step plan to follow to help me move through the deep waters to the shoreline.

I’m going to remind myself life will evolve into something beautiful again.

I’m going to remind myself that God has always provided me a safe passage through the storms of life, no matter the depth of the challenge.

With that thought, peace and hope returns.

Life will be ok. Different but ok.

I’ll be ok!

Sam xx

Will your anchor hold in the storms of life

Author: Priscilla J. Owens

Will your anchor hold in the storms of life,
when the clouds unfold their wings of strife?
When the strong tides lift, and the cables strain,
will your anchor drift, or firm remain?
[Refrain:]
We have an anchor that keeps the soul
steadfast and sure while the billows roll;
fastened to the Rock which cannot move,
grounded firm and deep in the Saviour’s love!

2 Will your anchor hold in the straits of fear,
when the breakers roar and the reef is near?
While the surges rave, and the wild winds blow,
shall the angry waves then your bark o’erflow?

 

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network,  the  Grace Girls Facebook Group and Salt and Light Linkup Group

If you would like to read a little more about my journey, here’s the link to My Story

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WEGO Health Award 2018 Nominee

 

 

 

 

 

 

18 thoughts on “Suddenly So Surreal

  1. I hate that things are so scary and undecided right now honey, but I know you can make it through this. Whenever I think something is too big I remember God only gives us as much as we can handle, I hope you know where I am if ever you need to talk xx

    Liked by 1 person

  2. SAm, the poem is beautiful! I am amazed at how you have organized so clearly your thoughts about such a daunting situation. I will print this cause I know I’ll need to read it again even though my changes at this point only involve a bath chair and bars. I have such brain fog that I’ve lost the ability to organize thoughts as I used to…it’s such an effort. Luckily I have your guidance. All of your blog posts should be made into a book my friend!! A training manual for how to navigate chronic illness! I hope you and your husband can find solutions that manifest without undo stresses on either of you. Are there other home support options available? Cleaning, longer carer hours, bedroom set up for you downstairs? I know how much you love your home. I will keep both of you in my thoughts and prayers! Xoxo💕🙏🏻 Sincerely, Marla

    Liked by 1 person

    1. Marla, thank you so much lovely lady.
      Our home isn’t large and unfortunately doesn’t have the capability to be extended or facilitate a downstairs bedroom.
      I’m ok with living somewhere else. I love making any house a home. We’ve moved 17 plus times over the years due to work and each time I quickly made a space we loved to call home.
      It’s a bit more challenging now but I will be using a company that will do all the hardwork of setting up the house and unpacking. They are brilliant!
      Where there’s a will there’s a way!
      Lots of love xx

      Like

  3. Sam, I know this must be an overwhelming and difficult time for you. When you talk about “my life with Peter” I hear both pain and fear. Facing new and challenging circumstances, especially those that can change your life so drastically, can be scary. I have heard you talk so many times about the appreciation you have for Peter and his role as caregiver. I also know how strong and independent you are. The fact that you are able to continue blogging and managing your support group, while in so much pain, is a testament to your determination to keep going no matter what! And when you are like that, the hardest thing in the world is to face a reality of wholly depending on someone else to help with the most basic of tasks. For those of us in traditional marriages, it is even more difficult, because we want to be the women caring for our husbands, not the other way around. And yet, I have seen how none of your difficulties so far have dissuaded you and Peter from having the most loving, beautiful relationship. I love the way you guys take the time to go look at the ocean together and have coffee or tea together, just enjoying sunshiny days. Even if you’re in a wheelchair full-time, that won’t change. Yes, the moving will be overwhelming and exhausting, and if you can’t help, you will feel guilty…but don’t! I suspect that just in the same way you have loads of friends online, I bet you have a whole bunch of people there who will be there to help you and Peter with this transition. You are not alone! As I spend time designing our future house, which we hope to be our last on this earth, I am having to consider that I may too be in a wheelchair one day. And as I research, I am finding that people who are fully disabled often can do much more than we think. I got an inkling of that when I had surgery on my right shoulder. Who knew there were devices that would help me cut meat and even open cans with one hand (and not my dominant one, either)! If you want to be inspired, find some video of the Paralympics. You may not be as athletic as they are, but I promise you, you will NOT be a lifeless vegetable, Sam Moss! I just know you will just be even more inspirational than you already are (and I will be your biggest cheerleader)! YOU CAN DO THIS! My primary prayer for you is for pain relief. It is not the broken bones that will disable you – it is the pain. Yet, I have seen you do an amazing job dealing with it already, and so just use those same techniques. You are not Superwoman, even if you seem to be in my eyes. You don’t have to do everything! Yes, REST is good! It is okay to let others do for you, and you need to understand that there is blessing in helping others. Take joy in the fact that by letting others help, you are blessing them. In the meantime, I will be praying that God will direct your path, and that the transition to your new life will be a smooth one. Love you much, sweet friend.

    Liked by 1 person

    1. Thank you beautiful friend.
      You are right that it is the level of crippling pain that is more disabling than anything. It is this that we need to get to a more manageable level.
      God is good and never fails us. Even without starting the process of change, doors are opening in areas I wasn’t even considering. Love the way He always goes before us to meet our needs.
      Lots of love xx

      Like

  4. Sam, I am so sorry your bone disease has ramped up so aggressively. You are the bravest person I know.

    Thinking of you. That’s all I can do, I have absolutely no idea how to cope with such a challenge. I do like your plan though.

    💕💕

    Liked by 1 person

  5. Your strength and faith are such an inspiration! Praying for God’s peace and strength to surround you! Thank you for your honesty and transparency in sharing!

    Liked by 1 person

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