Are you the type who loves or loathes routine? I used to abhor routine. I would always vary routines to fool myself that I was doing it on my terms. You see, I always like to have options and go with whatever suits my mood at that particular time. Driving routes to work, outfits, food, exercise and even choosing where to grocery shop all had to be constantly altered to keep life… well …interesting. Phew! It’s hard work being a free spirit!

I loved being busy; truth be told, I was probably addicted to it. If I wasn’t trying to balance ten spinning plates on tall poles I wasn’t happy. Juggling a demanding job, family life and socialising was invigorating, I had boundless energy.

Around two years into my MND/ALS journey when it really began to impact my health and my energy waned. I began to want and crave routine. I needed it to set me up for a good day. I’m now like an addict who needs their constant fix, so much so, I really don’t like stepping out of my precious routine at all.

Nowadays I live a sedate life within a safe structure of routine. Most weeks are the same and I like it like that. Weekend is family time, rest days are essential and throw in a couple of days out or an afternoon with visitors and I’m happy out. Social media allows me keep up to date with family, friends, news, culture etc. I can still feel part of society through this passive portal.

My body is frail and lacks muscle padding to protect my bones so every time my body is moved or I go over an uneven surface, like a speed bump on the road, the movement ricochets through my body. The sensory processing function of my brain has shifted. I don’t like loud noises, sudden movements, bright lights or strong smells and my taste buds are distorted. I can’t go hungry or get over-tired, my body gets too weak. To make a comparison, I’m like a young baby without the joy and optimism that surrounds a new life. I feel and function best within my routine. I know, I’m a barrel of laughs!

The grandmaster of our routine has always been and still is my husband. He keeps the house and family in good working order. He cares for me, my son, all the animals and even his mother who had to move in with us recently.

Our house is a routine machine. My husband is up at the crack of dawn to get himself ready for work, prepare lunches and get our little man up and ready for school. He then does the medical rounds giving his mother and me our morning pills, turns off my feeding machine and ventilator. Then he does the school run and heads to work.

My care team arrive shortly afterwards to get me up and ready for the day. I can’t exactly jump out of bed and hop into the shower so here is an example of the morning routine in my world:

Leg up, knee bent, one carer pushes at knee and hip while other carer pulls hip and shoulders to do a full body roll to place sling underneath. Full body roll in opposite direction to place sling fully around body. Two more full body rolls to get into place. Lift legs to position straps. Attach sling to hoist. Lift up in hoist. Position over shower chair. Lower into shower chair. Remove sling from under legs. Bring upper body forward by folding arms across waist and pushing shoulders forward to bend back and remove sling from body. Go in to bathroom for shower.

Spray water all over, apply soap and scrub from head to toe. Lift limbs and lean upper body forward to get all parts. When finished wrap in towels and bring back to bedroom.

Dry from head to toe. Apply lotions and creams. Dress from waist up and from the knees down. This involves lifting arms six times and four upper body lean forwards. Put sling back on. Hoist back onto bed for dressing.

Four to six full body rolls to dry and dress lower half. Put on sling again. Re-attach sling back on hoist. Lift and hoist into wheelchair. Lower into wheelchair. (This has to be 100% accurate so that I’m properly positioned for the day.)

Tilt back chair to ensure clothes under legs are smooth and crease free. Remove sling from under legs and place legs on foot rests. Tilt chair back up. Lean upper body forward and remove sling. Lift arms and fix sleeves. Position upper body centrally on chair and between head controls. Blow dry hair, make up and a coffee through my feeding tube. And that’s it; a “quick” shower. It takes two carers two full hours to complete my morning routine and have me ready to face the world.

Another essential factor to my successful routine is my brilliant care team. I previously told you about my “A Team” of carers. The four of them had been with me from the early days. Unfortunately I lost two of them during the summer – to say I was devastated is an understatement. To train and build a relationship with new carers takes time, because I’m non-verbal it’s a challenge to get used to my grunts, eye movements and hand signal system which we call “Jazz Hands”*.

Living with a terminal disease or chronic illness is a full time job, 24/7 and 365. No days off or holidays. No bank holidays or long weekends away to look forward to. Trying to get through a day and keep going can be a struggle, following a routine can aid that. An illness demands attention and tries to distract you from living life, sometimes it succeeds and sometimes it doesn’t; that unpredictability comes with it own set of burdens too.

Sharon  x

* I can no longer nod my head to indicate Yes or No during a conversation so use a method of communication that we’ve nicknamed Jazz Hands!

To help speed up conversations and to simplify things, use your hands to provide a visual cue and ask questions with only two possible answers. So, for Yes/No answers, use your right hand to represent a Yes answer and your left hand for No.
1. Hold up for hands facing me as you talk.
2. Ask a question that can have a Yes or No answer (or only has 2 possible answers, eg would you like tea or coffee?).
3. I will look at your Right or Left hand to answer Yes or No. (A tip for remembering which hand is which; the right hand Yes or right).


Identity crisis

I’m in a constant battle to hold on to my identity these days. I don’t recognise the person looking back at me in the mirror. Practically all the things that made me *me* have departed: I don’t look the same, I don’t sound the same, I don’t move or do things like I used to. Because I’m not the me I used to be.

No longer known as a wife, mother, daughter, sister or colleague; I’ve acquired a new, unique, identity dictated by my poor health. Forevermore I’ll be synonymous with a disease: Sharon + MND = me. That’s the label life has bestowed on me.

It’s practically impossible to hide the impact of a serious disease on your face and body. Regardless of this, I still try. I still like to put on my make up daily, wear nice clothes, paint my nails and don jewellery. I enjoy my style but most importantly I’m still trying to maintain part of who I was.

Since being diagnosed, I’ve been catapulted on a voyage of self discovery and I’ve been forced to carve out a new identity for myself. Whilst forging this new identity, I’ve also had to rediscover my purpose and worth in my new altered life. I had lost my self worth along the way, I was no longer a contributor in life but a taker, or, the worst feeling ever; a burden.

I managed to remain working for two and a half years after my diagnosis, thanks to the support of my work colleagues. For a short time after I retired I still had the energy to do lots and get out and about. It wasn’t until the fatigue hit me that I needed to rest more and therefore didn’t get out as much. That is when my self worth plummeted. While physically everything has slowed down, a myriad of ideas still swirl around my head. Fortunately writing this blog has given me a new focus and direction for ideas.

My husband said to me recently that “MND has been the making of me”. I was shocked at his comment and it took me a while to make sense or perhaps peace with it. This Ted Talk, by writer and psychologist Andrew Solomon helped me understand the uneasy compliment: ‘How the worst moments in our lives make us who we are’.  To watch, click here.

“You need to take the traumas and make them part of who you’ve come to be and you need to fold the worst events of your life in to a narrative of triumph, evincing a better self in response to things that hurt”.

When a seismic change rocks your life it causes you to re-evaluate everything. While MND has crushed me physically, it has made me stronger mentally. I’m not unique in reacting this way. I know and read about fellow MND patients around the world who have chosen this path too. There’s something about this disease that brings out the fighter in you, maybe it’s the injustice of your body wasting away that spurs on a mental fight like never before.

I haven’t given up on myself yet – I’m determined it will not quash me entirely!

Sharon x