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 that I no longer work, due to being physically disabled with a rare disease, those carefree, decision making days, are long gone.
Health is an amazing gift that most of us take for granted when we have it. Loss of health has such far reaching consequences.
One of the major consequences is the inability to make quick decisions, whether large or small.
Let’s Look At 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, pants, 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 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.
Let’s Look At 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 to have 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.
So 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 discomfort is 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 can 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
With chronic illness to manage on a daily basis, 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 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 a enough information to write a “moving home” thesis with every step by step detail I’ve documented for each researched plan option. 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 disease sufferers 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 that helps develop 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 into our emotions at various stages of our diseases. 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 need to prioritise activities that give me pleasure and increase my sense of well-being.
Note: This process may leave you with a list of things that need doing that are outside of your reach. That’s when it’s time to make some serious decisions about out sourcing these activities to someone else. Family, friends or an external agency are starting points to explore options.
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 and one thing on that list is definitely going to happen:
- Change the sheets
- Write a blog post
- Colour my hair
- 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 and my normal daily routine.
I can however unpack the food and enjoy a spot of writing later, while resting on the bed. So I have decided 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.
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 that may help get you started;
- Take time to think about your decisions;
- Think ahead and write down today all you want to achieve the following day, or next few days.
- Cross off the list all the things that you know are physically impossible all at once;
- Make sure you leave one thing on the list each day that you love to do;
- 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;
- If it still doesn’t go to plan, take time to acknowledge your grief, dust yourself off and try again next time;
- 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. That’s key. Your health really does depend on it.
- Keep copious notes of all your research. 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.
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 a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women