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 6 months I have felt like my disease has been winning. 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 extremely strong 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 for over 3 months, unable to sit, stand or walk has been the scariest episode of my bone disease to date.
While in hospital last year, during the acute stage of my disease deterioration, 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 wasn’t ready for this path. I’m still not ready. 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 bars surrounding my hospital bed.
I decided to play some music. A cross section of my favourite popular songs and inspirational gospel music. The familiar melodies 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.
With widespread pathological fractures throughout my body, I couldn’t move well before this incident but I could at least get off the bed and grab my walker or crutches. I could at least move one leg in front of the other and sit upright.
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 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 body my way, even if it broke all the rules.
Please Let Me Try
The next morning my Physiotherapist came into my room with none of the fancy equipment he had been trying to use, all designed to assist me to stand and walk.
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 want to try quickly getting off the bed, not stopping to sit but lifting myself upright onto my walker. I just felt I can do it with no assistance. I need to try. Please let me try“
I couldn’t believe my ears. He immediately responded with the words I has hoped to hear.
“Yes go for it! “
No arguments no other ideas, just yes. He said he’d been thinking overnight too and felt 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 had tears streaming down my face from pure relief.
I had reignited hope. I knew I had a long road ahead but some improvement was possible. I didn’t feel everything was useless.
This wonderful moment was repeated in various ways throughout my hospital stay and I refused to let go of hope. I refused to give up impossible dreams.
So you would think coming home after 6 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 eventually shower 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 I felt a huge hole of loss and hopelessness.
The more I had Carers visit daily, the more disabled I became rather than abled. They did things for me, rather than me finding ways 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 in my critical period, but I had improved enough to feel 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 and trying to kill me. I felt so nauseated, so 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 from the whole trauma. We had no time to relax together to even watch a favourite TV show.
I needed to do something about this new challenge. My husband and I needed to create our own routine and move at our own pace, to recharge and digest the events of the past months.
The next day I woke feeling slightly better. I had completely rested the previous day as I felt so ill. It worked. It was clearly what I needed and, feeling encouraged, I began to make the changes necessary. Changes which would ensure my chronic disease wasn’t able to completely overwhelm and control me anymore.
Over breakfast I sent numerous emails advising relevant agencies of my decision. Each email gave me an injection of enthusiasm and hope.
There was still a long road ahead for me but I felt strong enough not to need outside assistance with personal care. We didn’t need regular carers visiting, which freed up 3 days a week.
Physiotherapist, Occupational Therapists, Cleaners and a Dieticians still continue to visit and they are more than enough at this stage. I can still have carers when and if needed on an adhock basis. I have my husband as my full-time carer and together we make a good team in managing my daily needs.
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 can now find time to relax and even find 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 has tried to take me prisoner. It nearly won as I had begun to lose hope.
I need 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 disease is going to be difficult to navigate. I know I may have to accept a new normal over and over. I also know I need to be proactive.
I need to ensure I never stop finding ways to safely break free from my disease restrictions.
I need to hold on to hope.
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