Along Came Chronic Illness And Life Turned Upside Down

We all make decisions every day. Big decisions, small decisions. Some we are aware of and some are just automatic.

When I had reasonable health, I would spend my days making business and personal decisions without much effort. Some might have kept me awake at night but not many.

I never had to think about the physical toll any of my decisions would take. I could walk fast, I could exercise and I could pretty much rely on my body to carry me through thick and thin.

Along Came Chronic Illness

Now I can no longer work, due to being physically disabled with a rare bone disease, those carefree, decision making days, are long gone.

Health is an amazing gift most of us take for granted when we have it. Loss of health has such far reaching consequences.

Chronic Illness can feel like being tossed up in the air and crashing back on the ground head first. Life is suddenly upside down, inside out, and we spend a good deal of time in the early days trying to put it back in place.

What we need to do is put our lives back together in a new way.

I found one of the major challenges when chronic illness came along, was my sudden inability to make quick decisions like I was used to doing.

20190716_195231_0000.png

Dealing With Small Decisions

I remember so clearly how jumping out of bed at the sound of the alarm was an automatic natural response. Dashing to the kitchen to have breakfast. Quickly showering, styling my hair and putting on makeup. Dressing in a blouse, business suit, high-heeled shoes and jumping in the car to head to work, was all done on automatic pilot.

Wow, I feel exhausted just thinking about it now!

Today every small decision needs thinking through. How long can I stand at the bathroom sink to brush my teeth and deal with my stoma? What time should I start getting dressed if I want to sit in our courtyard and have lunch with my husband?

If I want to write a blog post, what other activities will I need to exclude from my day?

The only way is to exclude any hope of being dressed before lunchtime so I can enjoy a bit of writing.

Making Medium Decisions

What constitutes a medium decision will vary for all of us living with chronic illness. I am coming from the position of being relatively housebound. In my case the best example would be trying to get out for a coffee to a local cafe.

I have to plan a super quiet day the day before if I have any hope of going out the next day. Super quiet means no physical activity aside from essential hygiene.

On the day of the planned outing, I need to wake up no later than 6am so I can time my pain medication to be at its maximum benefit by 1pm. The afternoons are usually better for me in terms of energy and pain levels, but not always. So even my best laid plans can need cancelling.

Outings generally need to be between 1pm and 4pm and can’t be longer than an hour.

If I get my timing wrong with planning the outing I may as well not go. I’ve tried pushing through in the past and the pain and ramifications for days to come are just not worth it.

I also have to factor in all the small decisions necessary just to get dressed.

The whole process can be exhausting. The worst part is, even if successful in executing the plan, the recovery period will be days…..all for an hours outing.

Is it worth it? Yes definitely. We need to continue to live and enjoy as much of life as possible, while we can, within our limitations.

Let’s Look At Major Decisions

The thought of major decisions, for those of us with chronic illness, is generally terrifying and feels impossible.

It definitely won’t be easy to navigate major decisions but it’s not out of the question. In my experience it does require military style planning which, in all honesty, may take 12 months or longer to execute.

My husband and I recently went through the process of seriously considering my future health needs in terms of housing and long-term finances. Massive decisions were involved as we started looking at both of these areas.

We gave ourselves a 2 year time frame to inch our way towards our desired future.

It involved commencing with researching every single possible option available to us, before starting on any steps involving plan implementation.

The research period included organising quotes, making phone calls, internet searches, creating different budgets for various possible scenarios and so on.

In the end we sold our home and moved into a new home in a Lifestyle Village. The move was not without it’s consequences. You can read more about the fallout in my blog post “What was I thinking..moving house, spinal surgery and multiple broken bones”.

Thankfully, the move does have a happy ending. For the good news story, check out, My Very Own Escape To The Country

Don’t Rush The Process

When chronic illness is involved, the initial “gathering data” stage for any major decision can take at least a good 6 months.

We have to get it right. Our health depends on it.

You may work through things a little quicker than anticipated which is a bonus. One thing is for sure, we cannot over extend ourselves. Even though much of this research work is mental rather than physical, pain causes extreme fatigue and fatigue worsens pain. Administrative work is tiring and always exasperates my fatigue which in turn escalates my pain.

Slowly, slowly is the only way to make major decisions and definitely the only way to execute them.

I’m sure I have enough information gathered to write a “moving home” thesis, complete with step by step details, for numerous researched plan options. I at least know I didn’t leave a stone unturned before deciding to sell our home.

My health and future needs were the underpinning factor for every decision we made.

The Biggest Decision of All

With so much outside of our control with chronic disease, there is one important life changing decision chronic illness warriors often struggle with, at some point in their journey.

It is a decision which can result in a happy life if we can find a way to reach it.

I’ve spoken before about “Acceptance”. I really believe it is a key factor to developing a sense of well-being, especially when your body is doing it’s best to destroy you.

I’m not however going to preach a “choose your attitude” type approach. It’s not that easy. Grief infiltrates our emotions at various stages of our disease. Putting on a happy face just won’t cut it.

If we can learn to accept our circumstances we can begin to develop a new way of living. If I got upset every day about my pain levels and how hard it is to move from the bed to the ensuite, it’s just going to get harder.

If I acknowledge my pain and adjust all my activities to manage my pain, as far as possible, I can begin to move my focus from what I can’t do, to what I can do. I also need to prioritise life activities which bring joy, help me relax, feel fulfilled and increase my sense of well-being. These activities are so important to living a life of purpose despite chronic illness.

Note: This process may leave you with a list of things you need, or want to do, but are outside of your reach. If so, it’s time to make some serious decisions about seeking help with these activities. Family, friends or an external agency are starting points to explore options to help you maintain a good quality of life.

Acceptance makes the small and large decision making process just a little easier. For example, let’s say I have three things I would like to achieve tomorrow, but the reality is I’m likely only capable of one of them:

  1. Change the sheets
  2. Write a blog post
  3. Colour my hair
  4. Food Shop Delivery

Three of those activities are impossible for me on the same day. I accept that. They are 1,3 and 4. I can’t change the food delivery as it’s booked in. It’s a physical task to put the shopping away but one I love to do with my husband’s help.

So, changing the sheets and colouring my hair will have to wait until another day. It can’t be the next day as I need a recovery day from the food shop delivery. I also have to factor in the energy needed just to complete my normal daily routine on top of the food delivery.

I can however unpack the food and enjoy a spot of writing later, while resting on the bed. So I can decide on two activities I enjoy and I can look forward to. I’ll feel like I’ve achieved something at the end of the day.

Adopting a good decision making process, based on accepting my limitations, ensures I pace to manage my pain but also encourages a sense of well-being.

Final Thoughts

If you are mostly housebound due to your illness and struggling with how to get through each day, or are faced with major life changing decisions, here’s my few tips to hopefully help get you started on a plan forward:

  1. Take time to think about your decisions;
  2. Think ahead and write down today all you want to achieve the following day, or next few days;
  3. Cross off the list all the things you know are physically impossible all at once;
  4. Make sure you leave one thing on the list each day you love to do;
  5. For medium decisions, like an outing, plan at least a week in advance. You need to ensure you don’t overdo it leading up to the outing. Work with your own limitations and plan your week’s schedule so you ensure you have done everything possible to make it out;
  6. If it still doesn’t go to plan, take time to acknowledge your grief, dust yourself off and try again next time;
  7. For major decisions, research all options. Take your time. Don’t rush into big decisions. You need to get it right and you need to factor in getting help to execute most of it. This is key. Your health really does depend on it.
  8. Keep copious notes of all your research when planning major decisions. It’s tiring work and you don’t want to repeat it unnecessarily.

Making decisions can seem daunting with debilitating chronic illness but with a little careful planning you might be surprised at how much you are capable of.

Life may begin to feel like it’s up the right way again, or at least upright in a new way!

Take care

Sam xx

If you’re looking for genuine support, care, understanding & 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 & 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 the Salt and Light Linkup Group

Please click here to read our Privacy Policy

Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!

Healthcare Collaborator Nominee 2020
Best in Show: Community Nominee 2020
Best in Show: Blog Nominee 2020

https://www.wegohealth.com/Sam/awards

2 thoughts on “Along Came Chronic Illness And Life Turned Upside Down

  1. Thank you so much for posting this. You have clarified, in words, on paper what I am living. Although we are living with different diagnoses, the end result is that I have many of the same limitations you do. The planning process involved with budgeting time, energy, and “must do” vs “want to do” are the same. I don’t like to have to explain, in detail, why I can or can’t do something, but I’m thinking about printing out this post so if I really want someone to see, in a well written, compact version, what my daily life involves, I can let them read it. Thank you for the time and energy you used to write this.

    Like

  2. Sam,

    21 years ago Sheryl and i had to make many of these decisions. Our first one was to sell a house that was 3 stories and that I could barley get up and down the stairs. Decision 2 came some years after that. It was clear I had to give up working (rather my time had run out) so we took the awful decision fr me to stop work and give up future income. I was not ready and not happy. I was also 52. Then I we decided what to do. I mean literally what to do. It was awful. I decided to go back to school to occupy my time.

    I did that, but then what? For several years it has been one decision after another. Now we are working on end of life decisions. We have different opinions. 🙂

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.