I live with Facioscapulohumeral Muscular Dystrophy (FSHD), a degenerative disease of the skeletal muscle for which there is no known treatment or cure. For me, the chronic pain I experience associated with this disease is nothing short of debilitating, causing such high levels of fatigue both physically and mentally.
Along with the chronic pain, the most frequent complications I experience living with FSHD are:
- Buckling of me knees, where they collapse backwards in on themselves
- Buckling in my pelvis, with my legs threatening to give way as I walk
- Foot drop, difficulty lifting the foot high enough while walking resulting in tripping up
- Constant cramping, spasms and contractions of the muscles from head to toe
A typical shopping outing for me includes meeting my daughter and grandchildren (as she does her own shopping), taking a walkthrough of Big W, then some of the other shops before undertaking the grocery shopping.
The pain increases with every few steps I take, my mind instructs my legs to move but it’s is like lifting dead weight. The fatigue is on the increase as we walk towards the baby section, it is at this point that I switch into autopilot, forcing one step after another.
The difficulties I experience are significantly increased as I begin undertaking the task of shopping, a downhill slide from the moment I get a trolley. From the first pull and push of the trolley, I will know I am to experience a steeper decline in mobility and increase in pain and fatigue, which if dealing with a difficult trolley, will begin as soon as I enter into the store.
Navigating the trolley around corners or other shoppers, reaching for items as I struggle to lift my arms above my head, lifting of heavy items as the trolley becomes progressively heavier and harder to push and turn. Stopping the trolley suddenly, losing the momentum than having to heave and push off again to get moving takes it toll on me both in pain and fatigue. The footdrop and increase in fatigue increase the risks of tripping and my feet and toes constantly colliding into the wheels of the trolley as the muscle strength and control reduces.
Then comes the unloading of the items onto the conveyor belt of the register.
The loading of the bags into the trolley (throughout COVID-19, loading items back into the trolley to then pack them myself when at my car).
Pushing the trolley as I exit the store, struggling to manoeuvre it around obstacles and corners of doorways and other shoppers.
The unloading of the shopping from the trolley and into the car.
Getting the shopping from the car onto the front patio of the house.
Getting the shopping into the house through to the kitchen.
Finally, putting the shopping away.
Throughout the grocery shopping the cramping and contractions of muscles, pain and fatigue spread into my upper body from my hands up to my shoulders and neck, resulting in my entire body racked with pain, increasing immobility and extreme fatigue both physically and emotionally. The pain accompanying this disease is just as fatiguing as the immobility issues themselves.
The physical impacts, accommodations my body has had to make in the shopping experience last over the following few days while trying to maintain the usual household duties.
All of the above is further complicated and debilitating when I experience what I do with a tear in the muscle of the bowel wall identified pre-diagnosis in 2008.
The pain associated with the tear in the bowel muscle is progressive, beginning in my bowel, radiating in my pelvis, down both legs to my feet and toes, (causing what feels like my toes curling under my foot), making it difficult to stand, sit or lay down and can wake my from nighttime sleep. The pain, cramping and contractions of muscles are equivalent to birthing contractions, coming in waves over the course of two days twice a month as it is triggered by numerous times throughout my menstrual cycle.
While there is the simplicity of being able to order online and have the shopping delivered, there are a number of factors that comes with home delivery:
- It is isolating, as it reduces social participation within the wider community.
- It robs me of family time out in the community, as I often shop with my adult daughter and my grandson and my younger children.
- There is no guarantee that everything I order online is available, resulting in having to get out to the shops anyway often coming home with more than I went down for.
- It robs me of my choice and control of the shopping experience and shopping for markdowns that are not available online.