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

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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

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