Routine

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).

 

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Boo!

Introducing Robot – Boy 2.0 and The Rabbit in the Hat.

Halloween is one of my favourite times of the year. I was never into dressing up but that was before I had a kid! Now the big kid inside me has been unleashed and there’s no going back now!

For the past 6 years we have a lovely tradition of going Trick or Treat-ing with our friends. The kids and mums dress up, while the dads carry the excess loot!

It’s the one time of year where I can do the same as everyone else and just fit right in!

Happy Halloween to all you pumpkins!!

Halloween group j

Nil by mouth

My love affair with food and drink is over. That’s it. Finito. Terminado. The end. Fin.

Like all MND/ALS losses, when the end eventually arrives you’re somewhat prepared as you’ve been grieving every stage for the months or years leading up to this point. I shed endless tears, panicked and stressed about it and even tried to fight it but as you know by now, the MND monster always wins in the end.

Statistically, I should have another 40 plus years to “eat, drink and be merry”. Statistically, I wasn’t in the predominant risk categories of gender or age to get MND/ALS, but I did! My old boss used to say, “You can prove anything with numbers”. I’m no statistician but even I can see from those numbers that I’m one unlucky sod!

This latest loss has been a long time coming. The journey to the end of eating and drinking took place over three years. I first noticed the muscles in my mouth weaken when my voice began slurring. Even when I lost my voice I could still eat and drink, albeit with some modifications.

I lost the power in my hands well before I started having trouble eating. I had to be fed but this didn’t bother me too much as long as I was getting a bellyful!! I quickly discovered that we all have different eating styles and I was at the mercy of whoever was feeding me. I like to eat my vegetables and potatoes together, stop halfway through and eat my meat and accompanying sauce and then finish with the veggies and spuds. The most common style was a bit of everything on the fork, this was okay for stir fries, pasta dishes and curries but not for the meat and two veg traditional dinner! Another thing I noticed; if there was something on your plate that the person feeding you didn’t like, well, you probably weren’t going to taste it until you prompted them!

I was horrified and terrified at the prospect of never eating again. I hadn’t realised that food formed such a big part of my psyche until it was taken from me. Like any foodie, I got excited about food and loved thinking about and planning meals. I used to enjoy cooking and baking for family and friends and I loved eating out and trying new food. Food is emotive, we use it for pleasure, for comfort, for reward and to lift our spirits. I had to disconnect the emotions I created surrounding food and drink.

Slowly over the three years my swallow began to weaken and it was necessary to alter my food. I had to eliminate certain foods, beginning with dry and crumbly and then foods with bits and foods that were gritty. Things I found “gritty”, other people had no problem with. The biggest gritty culprit was spuds! They clung to my esophagus and propelled me into a coughing frenzy. I’ve been potato-less for about two years now; spuds were a big loss early on.

As the muscles continued to die away, I found chewing arduous, my jaws felt heavy so food had to be cut small. Then I began to struggle controlling food and particularly fluids in my mouth. I would have coughing fits when a crumb or drop of drink would go astray. The fluid problem was temporarily rectified by the addition of an ingenious little valve to the end of straw, that allowed me control every sip. This enabled me to continue drinking orally for about another two years. I needed a sauce to bind the food to aid swallowing while still cutting food smaller and smaller until liquidising was the last option. But I couldn’t do it, it just looked too disgusting and was a step too far for me.

I knew the only option was a feeding tube/PEG but I couldn’t bear to even consider it in the early days. The thought of it grossed me out and made me feel weak. Just thinking about it gave me the heebie jeebies!

One of the odd symptoms I experienced along the way was my palette changing completely. I ended up not being able to tolerate any spicy or strong flavors. Simple things like black pepper and citrus flavours became too much. As my jaws continued to weaken I could only bear a small amount of food in my mouth and I became repulsed by some textures. Practically overnight I went from eating eggs most days to gagging on an omelette or poached egg. By this stage I was turning off things every week. In hindsight, my body knew what was best and decided to put a stop to eating in its own unique way.

Every meal started to become a problem. It took all my strength and concentration to get through a meal unscathed. Drinking sufficient amounts of fluids took all my time and energy and the feeling of dehydration was dreadful. At this stage I knew getting a feeding tube was the right thing to do. The operation was straightforward and although I felt a bit precious about my poor tummy being permanently punctured, the relief of getting food and especially drinks in without effort was massive. It was definitely the best decision and I immediately felt better – and looked better too (or so everyone told me!). A liquid diet is anything but appealing but it’s extremely efficient. With the PEG I took the bulk of my nutrition through it and ate a small lunch. Most of my hydration and all my medication went through it too and I looked forward to a lovely foamy latte every morning. I had to give up drinking orally six months after getting the PEG and surrender eating thirteen months later.

I miss eating so much; things like biting into a slice of warm buttery toast; munching on my favourite salt + vinegar crisps or tucking into a lovely roast chicken dinner with roast potatoes, stuffing, lots of different vegetables and delicious gravy poured  over. Certain aromas are torturous; like the waft from a bag of piping-hot chips from the chipper or rashers and sausages sizzling on the pan – oh, the smells get me every time!

What has surprised me most about all this is how well I’m coping without proper food. I occasionally get moments where I would sell my soul for something nice to eat. The secret is not to let myself get too hungry and I can still manage a small piece of chocolate, some ice cream or custard; they’re my sweet slice of salvation.

You’ve heard the expression – you eat with your eyes. Let me confirm that’s complete bullsh!t ! Believe me, I’ve tried.

Goodbye food and drink, you’ve given me humongous pleasure over the years! I’m sorry it had to end like this…

Sharon x

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

Raising awareness with children

My blog is a year old this month, during this time I’ve been (over!?)sharing my life with you and taken you behind the scenes of my day-to-day reality. The feedback has been wonderful; thanks to everyone who left lovely comments.

I’ve gotten so much out of writing the blog; It has given me a sense of purpose and focus again and proven to be cathartic – dwelling on my life for the blog has helped me come to terms with my lot.

In the comfy surroundings of my kitchen, blogging away on my Eye Gaze, I’m doing my bit to raise awareness of this cruel disease.  But last month, I stepped out of my comfort zone and was part of an awareness campaign that changed me forever!

A pal of mine who works in my son’s school approached me about doing an awareness campaign in the school. She suggested getting the children to do a ‘Silence’ to highlight the fact that most people with MND/ALS lose the ability to talk. She asked me to come and speak to the students. My Eye Gaze is so slow and unsociable that I didn’t have the confidence to do a presentation. The old me would have done it but the new and dis-improved me just didn’t feel able. As a compromise I offered to do a video.

I needed someone talented and professional to shoot the video; cue my younger sister. I then needed some giddy kids to laugh at my jokes; cue my son and his adorable friend. An interviewer; my pal who got me into this. And a couple of extras; my husband, brother-in-law and our dog.

I’m acutely aware that cocooned in my high-tech equipment I can appear intimidating. I continually use humour as a crutch for dealing with my MND – at times it’s a thin line between laughing and crying but I try to choose laughter as crying always ruins my make up! With this in mind, and with my knowledge of what makes an eight-year-old boy tick, I knew what direction I wanted the video to take.  I was a little apprehensive about how the video would be received. We all hate seeing and hearing ourselves on camera but it was especially hard for me to watch a severely-disabled version of myself.  It was probably the first time I had seen myself on video with MND and even I was surprised by my deterioration.

There are 420 pupils in 16 classes in the school. Over the course of the week, my son, his friend and my pal who works in the school went around all of them to present the video and give a demonstration of the Eye Gaze. What happened next surprised us; the students all LOVED the video; the younger ones enjoyed the wheelchair shenanigans whereas the older ones were fascinated by the Eye Gaze. Another wonderful thing that happened was that my son stood up, off his own bat, and had no problem answering the barrage of questions that naturally followed.

After the first day I began receiving lovely emails from the teachers telling me how much the students enjoyed the video.  They were also really impressed at how natural my son was at presenting and how he held the students’ attention throughout. His level of knowledge of MND astounded everyone. After five years living with MND we tend not to have deep conversations about it anymore, mainly because – ‘it is what it is’ by now and the progression of the disease is less obvious at this stage, but we’re always open with him. I guess I had never thought about what he knew about the disease.

As the week progressed he came home full of confidence and delighted at his new found fame – everyone in the school knew his name! I was getting a flow of emails daily from teachers with great stories of the reactions from students.

“…one of the kids asked him whether you could sneeze or whether you had to type in the word ‘sneeze’, if you needed to sneeze – his answer was priceless – he just looked at her as if she was bonkers and in a very clear dead-pan voice answered; She’s not a robot you know – of course she can sneeze!”

All classes participated in a ‘Silence’ after seeing the video. Younger students did a short one where older students did an hour! The older classes loved the experience which was another surprise. The teachers organised to do ‘Art’ or play games during the time and many students made cards and drew fantastic pictures for me. I was blown away by the extremely thoughtful and kind wishes sent and even learned a few new jokes. My son was so chuffed bringing home the messages for me. My favourite was; “You are the shine in the sky”. Incredibly cute and sweet.

Needless to say the teachers loved the ‘Silence’ but they really enjoyed watching and listening to how the children processed the entire experience. It brought up subjects that had never been discussed before and gave students an opportunity to ask questions and learn about a topic that is not easy to discuss.

“…the video became a catalyst for a number of really powerful lessons… Teachers were really moved by how the kids started to discuss philosophical issues about the importance of connecting with others, optimism, relationships, human spirit etc. ”

I got to see a video of one of the senior classes discussing the video; it was very moving hearing their empathetic and thoughtful discussions. The teacher then brought things in a slightly different direction to talk about mental health and how I have a ‘glass-half-full’ attitude despite my disability. I was especially moved by this. Some students even mentioned things I had written about in my blog. The class then discussed my favourite quote – ” Kindness is the highest form of wisdom”. It was a special moment to witness the students reflecting on this and I was really impressed how the teacher developed the subject. Another teacher spoke about how every family is different: For various reasons, some families have only one parent at home, while others have a disabled or sick sibling or parent – the point was that every family is different and that’s normal.

We all gained so much from the experience and learned from the students’ positive attitudes. The Principal said, “The debate that this campaign sparked in the school has been really powerful.  I think we all (children and adults) debated, reflected and engaged last week and that is what true education is all about. There are times when I feel so proud to be part of DPETNS and this is definitely one of them!”

On a personal level, the experience was incredibly positive on numerous levels. I’m still self-conscience about my disability and constantly worry how MND is impacting my son. Never in my wildest dreams could I have imagined a situation where my son could give talks about MND, was showing off his disabled mum and was famous because of his mum’s dodgy jokes! It was amazing to see him caught up in a whirlwind of positive attitudes about MND and disabilities. By the end of the week I could feel we were closer than ever.

The person who made all this happen was my wonderful friend. When not working and raising her children she is a champion of community, charity and volunteerism. To create such positive attitudes in ALL students around MND and disabilities is an incredible accomplishment AND she also empowered my son to talk openly and with confidence about his home life.  Thank you dear friend, you’re an inspiration to us all.

It didn’t end there, on the Friday the Parent/Teacher Association held a hugely successful Cake Sale in aid of the Irish Motor Neurone Disease Association. Students baked their hearts out and were extremely proud of the amount raised.

To view our video click here.

Sharon x

Poker Face

I’ve acquired all these useless talents since having MND/ALS. I can sit in the same position and not move for an entire day. I can talk without moving my lips. I can turn on the TV with my eyes. And I have a poker face any gambler would give their right arm for!

When I first learnt I had a muscle-wasting disease, I focused my frantic worries on the muscles within my limbs. Nearly five years down the road, my worries are centered around losing muscles so critical and vital, they are literally holding me together.

Most of my voluntary muscles that I control, have withered away by now and weirdly I’ve become used to their inert state. Every now and again an involuntary muscle which I have no control over, surprises me and makes my arm or leg move, usually because of a twitch. I enjoy the sensation and admire their commitment for still hanging in there and doing their bit. My MND mustn’t think they’re worthy of its attention or maybe the monster underestimated their importance, just like I had.

The monster is currently focused on the destruction of my face and neck muscles. Without support, my head feels heavy as I try to balance it and when I’m tired it acts like a dashboard figurine on a bumpy road.

The muscles on my face are a trickier problem. There’s no way to support them, they just hang, looking sad and tired. They no longer reflect my true feelings on command. Interestingly enough, the involuntary muscles allow me a few reactionary expressions. Happy and sad are the main two. Then I’ve my ‘sucking lemons face’ when I eat something I don’t like and my ‘wtf?!’ face when someone does something I don’t want or like. Unfortunately my husband, mother and carers witness this one occasionally – sorry guys. Then there’s my bold face when I’m trying to make a smart comment or tell a joke; I sport a goofy grin and can’t stop chuckling to myself as I type it up on my Eye Gaze.

All these expressions are controlled by involuntary muscles, they reflect what I’m feeling at that particular time. They’re flash reactions as I can’t maintain them for long so I like to think of them as ‘real’ reactions; from the heart and not from the head. If I’m happy or sad, I can generally hold those a little longer. For photos, I need a jester behind the camera to help me hold a smile. But if I’m in a ‘meh’ mood then my poker face is what you’ll see, it’s the default expression; blank, motionless and expressionless.

Without facial expressions people are impossible to interpret. During a conversation with me, it’s easy to misread my blank face as disinterested. Non-verbal cues like nodding yes and no are beyond my capabilities too. And if I start typing a reaction on my Eye Gaze, it appears I’m not listening so the conversation pauses… it can be very confusing as the conversation stops and starts. Unless you’re used to chatting with me regularly it’s hard-going. I like to give visitors advance notice of my poker face, removing any confusion from the get-go.

An unexpected fringe benefit of having lifeless muscles on my face; the wrinkles aren’t so obvious, MND is doing the same job as Botox! Who’d have thought there was a silver lining wrapped up in this one 😉

Sharon x

For Margaret F, who always wore a kind and beautiful smile.

Farewell privacy

“How are your bowels doing?” A personal and slightly bizarre question, right? Well… not in my world; I’m asked that almost every day. The doctor, nurse, carers and even my husband, ALL want to know how it’s all going in that department. There hasn’t been this level of interest in bowel movements since my Pride and Joy arrived into this world, over eight years ago!

The day my independence sailed off into the sunset it wasn’t alone; privacy and autonomy were part of the flotilla too. I can do nothing without help, nothing. I can’t get up, go to the toilet, get dressed, eat, walk or even talk without physical or technological assistance.

Privacy is a cherished right so many people take for granted. I was 39 when I lost mine because of MND/ALS. I remember so clearly the day it all changed: It was a sunny Autumn morning as I shuffled nervously to the front door. I had been assigned a carer to help me get ready as I had been struggling for nearly two hours to do it by myself. It was exhausting. It’s incredibly difficult to admit you need help, for me I knew it was the beginning of the end. The scales of power had tipped and MND was getting the better of me.

The lack of privacy surrounding my bowels is just the tip of the iceberg. My daily shower is a group affair. Imagine getting stripped and scrubbed and then dressed by two carers every day. Not something you’d find on the average person’s Bucket List. Fortunately I have wonderful carers who make me feel comfortable sitting in the nip while still being able to have a laugh. They have made the abnormal feel normal for me. I have to admit my relationship with my ‘A-Team’ of carers is pretty uninhibited, after three years together, inhabiting each other’s personal space, there’s not too much we don’t know about each other ; )  My husband used to feel sorry for me needing carers, that was until he heard the roars of laughter coming from the bathroom –  then his sympathy quickly evaporated!

One of the things I miss the most is curling up and having a good cry alone, in private. MND exaggerates my emotions so when I cry it’s a full-on snots and tears incident, impossible to hide as they both drip down my face; not a pretty sight. I can’t hide my sadness even when I need to most.

All joking aside, I suspect some of you may be thinking – “Oh God, I’d sooner die”.  But when you’re thrown into a situation beyond your control that you know you’ll never win, sometimes you just have to let go and see where it takes you. It’s all about compromise folks; my new best-frenemy! I’ve become a master of compromise, not by choice, I might add. I never wanted carers but now I’m fully dependent on them. They provide me with independence so I don’t have to burden my husband with my daily personal care – that’s priceless.

Life doesn’t always work out how you expect but sometimes you just have to find the strength to muddle through and focus on what’s important to you. It’s not easy…

Sharon x