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A New 'Leg' of My Journey: Accepting Life With Pain and Illness

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It’s been nearly three years since my left femur snapped in two.

Those first two years I can barely remember. It’s a blur of surgery after surgery, hospital stay after hospital stay, recovery after recovery. Actually recovery is probably the wrong word because I haven’t recovered. My left femur is still broken. It’s officially diagnosed as non-union.

A pole holds it together but the two pieces of bone, being compressed together by an interlocking screw at the base of the long rod, rub constantly and cause unrelenting pain. My right leg has a femur stress fracture and that too is being supported by an internal rod and not healing. That too has aching pain on a daily basis despite a regime of strong painkillers.

My feet also have multiple, constant, non-healing fractures, although amazingly these only really hurt occasionally. It may be the other pain is just greater. I have muscular atrophy and bone marrow inflammation in both legs. I have sclerosis in my spine and severe damage to most of the discs in my neck and back.

All of the above is a result of my rare bone disease. It has no cure or treatment so the disability and pain are here to stay.

Rheumatoid arthritis sits alongside my bone disease and has its own set of varying symptoms and pain issues. It is joined by Sjogren’s syndrome, trigeminal neuralgia, inflammatory nerve disease and autoimmune thyroid disease is also starting to present itself.

Managing these disabilities and using double crutches makes getting out and about difficult, especially when I have to factor in my permanent colostomy and the care that needs at its beck and call. So, the above are the facts, the reality of my situation. Facing facts and realities of this nature can pretty much do one of two things:

1. Cause extreme depression, or…

2. Motivate you to make a plan to live well with your diseases.

From the outset I’ve chosen to embrace my situation and plan for the future as much as possible. That plan has included a multi-faceted approach, including:

1. Medical retirement

2. My husband becoming my full-time carer

3. Care agency support

4. Building a strong relationship with my medical team

5. Installing a stair lift

6. Installing bathroom/toilet rails and making other changes to our home to cater to my new needs

7. Keeping my brain active through blogging/writing

8. Setting up an online forum, Medical Musings With Friends, to connect with and help others living with chronic and complex diseases

9. Enjoying the little things in life every day, caring for my soul as well as my body

10. Planning for my future care with permanent residential care approved, if/when it’s needed

The list could be expanded as there are lots of other things I do to ensure I embrace life within my limitations, but you get the idea.

One thing I’ve struggled with is getting out of the house, other than for medical appointments or a coffee at our local cafe. My husband and I have often discussed an electric wheelchair or mobility scooter, but I always wanted to wait and see if my leg would heal. I felt I was giving up on the hope it might heal if we went down that path.

As my three-year anniversary of my bone disease diagnosis approaches, I know it’s time to face some more facts. My disease is a permanent disease. Even if my leg could heal it won’t heal properly as the bone and muscles are dead and the nature of my disease is that I have low to negligible bone turnover. Pain and disability will be my lifelong companions.

I’m not looking to go on great overseas adventures or long trips, but I would like to stroll in the park with my husband or go to a Westfield shopping center every now and again. I can’t do that on crutches. At best I can walk 100 meters on a good day, but that is a huge stretch for me and is painful and exhausting.

So, it’s time…time for a new “leg” of my journey to begin. That leg starts with a mobility scooter. It arrived this week and we registered it today. I am the proud owner of new legs…well, wheels to be precise!

It’s not without its challenges because the suspension capabilities of the scooter are limited and the vibrations through the seat aggravate the pain in my legs where they are broken. We’re getting a gel cushion which will help alleviate that to some degree.

I’m hoping with time my legs will adjust to it and allow me to stay out for longer trips. To begin with, we will start slow. A short outing to the park will be wonderful. I can’t wait.

Life with chronic disease requires constant adjustment. There are never neat and easy answers. The answers to our problems are often life-changing and take time to digest. For me the key is not to give up looking for solutions to new issues.

We might hope for a particular outcome only to discover that’s not possible, but don’t lose hope. Find it in a different outcome. It’s a bit like a sailor adjusting the yacht’s sails when the wind suddenly blows in an unexpected direction. That happens with chronic disease all the time and we have to find new ways to cope when previous ways cease working.

So far I haven’t gotten any further than our garage on my new legs, but stay tuned, as I’m sure I’ll soon be writing an article all about “The Adventures of Sam and her Sleigh.”

“As we trust God to give us wisdom for today’s decisions, He will lead us a step at a time into what He wants us to be doing in the future.” – Theodore Epp

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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via berdsigns.

Originally published: July 20, 2017
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