Chronic Illness takes many things from us. Some aspects of our diseases we can’t control but there are some we need to find a way to overcome.
Over the past 9 weeks I have felt like I was in captivity. I’ve felt like a prisoner in a body determined to suffocate me. I’ve even woken in the middle of the night, struggling to get my breath, as pain enveloped my body and pain medication induced numerous unwelcome side effects.
It’s been as much a mental battle as it has been a physical battle.
Being confined to bed and unable to sit, stand or walk has been the scariest episode of my bone disease to date.
While in hospital my Specialists were not very hopeful of seeing improvements in a hurry, if at all. They even indicated I would need to be transferred to respite care (nursing home), rather than rehab as I would not have achieved the physical levels necessary to even be eligible for the Rehabilition department. Their concern did little to instil me with hope.
I Can’t Give Up
The thought of being placed in a nursing home filled me with terror. I’m not ready for this path. I need to keep fighting while I have fight left in me.
I remember lying flat on the hospital bed, staring at the ceiling, praying for an answer. I needed hope. I needed encouragement. No one could give it to me. I had to find it. My body needed to give me a sign it wasn’t giving up on me entirely. It certainly felt like I was moving towards the end of the road. Did I have a choice? Could I turn this situation around somehow?
I could give up, give in or I could find a way to break free from the prison bars surrounding my hospital bed.
I decided to play some music. A cross section of my favourite popular songs and inspirational gospel music. It began to calm my mind, my soul.
I began to visualise myself walking, moving, sitting upright, going home. I began to think back to how I could move prior to this devastating acute disease episode.
I couldn’t move well before this incident but I could get off the bed and grab my walker or crutches. I could move one leg in front of the other.
I began to visualise doing this again. Moving in a way my body was accustomed to, not in a perfect way but in a way where I at least had some independence.
I decided I couldn’t give up. I wasn’t ready to give up. I had to find a way to prove my medical team wrong. I had to find a way to convince my physiotherapist to allow me to try to move my way, even if it broke all the rules.
Please Let Me Try
The next morning my Physiotherapist came into my room with no fancy equipment designed to assist me.
I was actually relieved to see him free of “party tricks” and before he had a chance to speak I launched into my prepared speech.
I wanted to try quickly getting off the bed, not stopping to sit but lifting myself upright onto my walker. I just felt I could do it with no assistance. I needed to try.
He said yes go for it! No arguments no other ideas, just yes. He said he’d been thinking overnight we should try something like this.
Yes! My prayers were being answered. Now all I needed to do was execute my plan. I’d say I had nothing to lose but I really had everything to lose!
I closed my eyes and took some deep breaths. I needed a moment to calm myself and give this everything. I counted to three and launched into action.
Oh my goodness! It worked! I was upright holding onto my walker. I was standing. My Physio was clapping and jumping for joy. I was crying from pure relief.
I had broken free from my prison. I had reignited hope. I knew I had a long road ahead but life was still possible. I didn’t feel everything was useless.
Another Prison Cell
This wonderful moment was repeated in various ways throughout my hospital stay and I refused to let go of hope and my own ability to try to progress against the odds.
You would think coming home after 5 weeks of being in hospital would instil further hope.
In the most part it did until I began to achieve more and more goals. I know you might think this sounds strange but the more I achieved, the more I felt the loss of what I wasn’t able to achieve.
Yes, I could shower now instead of bed baths, but not without help and not without excruciating pain.
Yes, I could potter around the home but I couldn’t help with household tasks.
Yes, I could get dressed but doing my hair and makeup regularly just took too much out of me.
The more I thought about what I couldn’t achieve, the more the walls of my home became a prison.
The more I had Carers visit daily, the more disabled I became rather than abled. They did things for me, rather than finding ways for me to do them. They took up so many hours in my day, I lost time to do my pain management therapy activities like writing, relaxing with a good movie, administering my support forum etc. They were amazing, genuinely caring people, and much needed when I was critical, but I’d improved and I needed to unclip my wings.
As my bedroom walls closed in on me, in a similar way to my hospital room, I knew I was in trouble. I could feel all hope slipping away again. I couldn’t breathe. My pain was excruciating, I felt critical as if the disease was flowing through my viens. I felt so nauseated I even vomited. I was exhausted.
Exhausted from pain, exhausted from Carers, Rehabilitation workers, cleaners etc, all visiting our home everyday, and leaving both my husband and I with little time to just recover.
We now needed to create our own routine and move at our own pace, to recharge and digest the events of the past 9 weeks.
The next day I woke feeling better. I had completely rested the previous day as I felt so ill. It worked. It was clearly what I needed and this encouragement from my body gave me the courage to make the changes necessary. Changes which would not allow my chronic disease to take me prisoner.
Over breakfast I sent numerous emails advising relevant agencies of my decision. Each email gave me an injection of enthusiasm and hope.
There’s still a long road ahead for me but I do feel strong enough not to need outside assistance with personal care. This means we won’t need regular carers visiting, which will free up 3 days a week.
Physio, OT, Cleaners and a Dietician will continue to visit and they are more than enough for a while. I can still have carers when and if needed on an adhock basis
I’m breathing again. Breathing a sigh of relief. It’s good to set boundaries and work out what’s best for our own situation.
I began to relax and even found time to watch a favourite TV show. My ears pricked up when one of the actors, in a fairly intense scene, said,
” You’re only a prisoner when you lose hope”
Those words resonated with me so much. My disease had taken me prisoner and I had lost hope. I needed to hold on to hope.
I needed to remind myself of my own message to others, Chronic Illness is a part of our lives not all of our lives.
I know my recovery is going to be difficult. I know I may have to accept a new normal but I also know I need to be proactive and never stop ensuring my life is free from unnecessary prison bars.
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.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!