Accepting A New Adventure…Chronic Illness Style

I have had my nose buried in my phone for the past three months.

Well ok, it’s always buried in it, but this has been excessive and it’s all because I’ve been on a mission.

Mission Impossible

My mission has been to find a way to sell our home, pay off our mortgage and find a low set, easy care home to either buy or rent. Most importantly, whatever we do, it must give us security of tenure.

It really has been an impossible mission as after we pay off our mortgage, we are left with very little. Enough to buy a ramshackled home, entirely unsuitable for a disabled person. Plus we wouldn’t have any funds to renovate even if we did buy such a place.

My health continues to deteriorate and even with private health insurance, out-of-pocket medical expenses are high. Without our Access Equity Mortgage funding my medical needs over the past five years, we wouldn’t have been able to stay in our current home for as long as we have.

I have two lovely new foot fractures. They highlight the need to make life as simple as possible. They also highlight my disease activity continues to be aggressive and that means ongoing medical costs.

A lowset smaller home is essential for me to remain as able-bodied around the house as possible. My stair lift has been great but we live in constant fear of it breaking down (it’s a fear based on actual experience). When that happens I am completely stuck either upstairs or downstairs. Not ideal.

So, it’s time to adapt our thinking, adjust our long term plans and accept a new adventure!

A New Adventure Awaits

All my research has not been in vain. We have found the perfect solution to our housing dilemma and are taking giant leaps to realising our goal of downsizing, all on one level, with security of tenure.

In Australia, over 50’s lifestyle villages are becoming increasingly popular and I now know why. It’s a wonderful combination of owning a quality home with no entry or exit fees and no stamp duty. You keep all capital gains if you decide to sell in the future, with no requirement to pay refurbishment costs (as often required in traditional retirement villages). Home prices are half what they would be outside of the village because you don’t own the land.

You pay a minimal rent (site fees) for the land which, in our case, is less than what we currently pay on rates and body corporate fees. The site fees are  only 25% of what we would pay if we privately rented a similar size and quality property.

It seems too good to be true but it’s not. It’s perfect. Perfect for our situation and it’s been pivotal to helping us accept our circumstances can change.

The Real Challenge

So we have our house on the market and a deposit on a brand new home in a beautiful Lifestyle village. It has a gorgeous Hampton’s style club house, 2 heated pools, one with brilliant disability access. A gym and places to walk, or in my case scoot around on my mobility scooter.

The real challenge is the physical toll the move will take on my disabled body.

Yes, I will have packers and unpackers. Yes, I will pace and rest.

There is always so much more to moving though than packing and unpacking. Organising it alone is a full time Project Management role.

In my case, any slight change to my regular daily routine, causes an intensity of pain which spirals out of control for days.

It’s a real challenge to place pain management at the top of any daily agenda when there is so much to be done. If I don’t I will end up in hospital and that’s the last thing I want.

Managing The Challenge

I’d love to say, here are three easy steps for those living with chronic disease, to manage selling, buying and moving to your new home.

At this point I feel like I don’t have a clue but I’m working on it.

I have a loose plan that I am constantly revising but it does have some key elements which can be applied to any major change event.

• Budget – Every plan needs a budget. Everything costs money. One of the major stresses in life is financial pressure, so set a budget for your life change and make sure all other plans fit within that budget. Start with budget critical items. These are things you can’t do without to ensure your mission impossible has a hope of becoming a reality. It will really help significantly with managing your physical and mental health. If budgeting is not a skill you feel you have,  ask a close friend or family member to help you. You can also seek professional help if you can afford it.

 

• High Level Timetable – Once you have your budget sorted, a high level timetable of when key tasks need to be completed is really important. It might change a little as you start to implement your plan, but it will ensure you have a clear road map to help navigate the journey from start to finish. Think of it as a Google Map with directions telling you to turn left or right, plus how long it will take to arrive at each stage of the trip.

 

• Seek Help – When living with Chronic Disease, let’s face it, it’s unlikely we’ll be independent. Generally help is required. For my new adventure, I’m enlisting the services of an amazing company of women who will pack my home in one day and unpack it completely within five hours the next day. I’ve used them before and they are simply special. Their standards exceed my very fussy expectations. When they leave, the home looks like we had always lived there. Will it cost me? Absolutely. It’s surprisingly cheaper than you’d think and it’s the first “critical” item on my budget. I’ve made other financial sacrifices in order to fund this help as I know it’s for the greater good of my health. I need no fuss and no bother and they provide peace of mind which in turn helps me manage my pain more effectively.

 

• Rest and Rescue Plan – Part of any major change event plan must include what I call a “Rest and Rescue” plan. Even with a well paced timetable and a stress free budget, your body will still be doing more than normal. Before you know it the accumulation of the little extras will hit you and you will soon feel like an elephant is sitting on you.  I’m there right now. Unable to physically move my body. Pain searing and not responding to medication. I’ve written about my Chronic Illness Catastrophe Days before and the rest and rescue or retreat plan is set out in that post. I’m following it for the next few days to try to get on top of my current chronic illness crisis.

 

• An Essential Treat – This falls a little into the Rest and Retreat category. As an example, we have decided we can’t move out of the old house and into the new house on the same day. I won’t even cope physically doing it over two days. So a day before our old home is packed up we are moving ourselves out into a beautiful holiday resort half way between our old home and new home. We can still project manage the move from there but I will be out of the chaos and can rest. We are going to store our furniture for a week, giving us time to get a few things sorted at the new house, while still staying at our holiday resort. In fact we are going to stay there for 2 weeks and only move into our new home once everything has been unpacked and sorted. This has been another item that was budget critical. With careful planning and juggling I’ve been able to make it work. For me it’s my rescue plan. It will ensure I live to tell the tale of the move in all its glory. It’s a treat but it’s also a life necessity. Remember to build in your essential treat when planning your life changing event. It’s why starting with your budget is so important to the whole planning process.

Stay Tuned

I will no doubt face many adventures over coming months. I’ve planned everything as far as I can. Until our home sells I can’t implement much but I at least know I’m ready to launch as soon as we get a green light.

Change is daunting for anyone and even more so when you know your body is so unreliable.

Life will never be stagnant so it’s important to build skills to help us manage major changes.

I hope my story and experiences help you, in some small way, manage life with a chronic disease.

I hope above all else the tips and shared adventures on My Medical Musings, help you live the best life possible as you adapt, adjust and accept your own chronic illness circumstances and challenges.

Take care

Sam xx

Deuteronomy 31:8 “The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.”