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ALS Worldwide
1800 North Prospect Avenue, Suite 4B
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ALS Worldwide
August 01, 2016

Never Losing Hope

3 years since "D-Day." The day those three letters shattered my world. The day that I got diagnosed with a death sentence with 2-5 years to live. 

MND, specifically ALS.

My body is no longer my own. However, I can laugh at myself as so many weird symptoms happen to me that are totally out of my control! My limbs are crazy. Stupid ALS/MND!

Every person with ALS/MND has a completely different journey. Some lose their speech first, some their feet, some their ability to swallow. With me, it was my hand. I first lost dexterity and grip in my right hand and it took 14 frustrating months to diagnose, as my symptoms were fairly mild. There are no tests for ALS/MND so they have to rule out everything else. Here I was, thinking that I had a repetitive strain injury from playing too many games on my phone!

My nerves/muscles are very chatty (like me!), which means I'm constantly twitching and actually have very good tone. Just wish it would work on my bum! The involuntary muscles, especially in my legs, bully the muscles that I control. This means that my legs shake like mad when I move; they actually vibrate! It's a great party trick but everyone gets freaked out over how enthusiastic I am over it. Awkward! This also means that I have zero balance, so walking is not possible. I can still stand though.

My arms, neck, face and torso are the worst. Some muscles work, some don't. The ones that do are inhibited by the dodgy ones. I get cramps with any task I do. I can't laugh, as my ribs cramp up. That upsets me. I also can't cry or get stressed, as I can't breathe and my face cramps up. I can no longer sit in a straight back chair as gravity hates me! I feel like a newborn baby. My hands barely work now, but I still manage to feed myself, and drink.

I have no energy whatsoever. Even eating, I feel like I've ran a bloody marathon! My speech is so slow it bores me. My brain still travels at a million miles an hour though! It isn't my tongue that has wasted, it's my jaw - so my words aren't slurred at all, just super slow. My mum makes me laugh as I cut words a lot because it's easier. So if I say, "gone shop" my mum corrects me with "gone to the shop."

I thought as I've luckily put weight on (most lose weight to the extreme) that my cheeks were just chubby. Instead, because my jaw is so weak, my cheeks overcompensate so they are actually muscle. My cheeks are the strongest part of my body!

I get phantom itches, which I can't bloody scratch. I get weird electric shock type pain and bites, which both make me jump and shake! I've got scars from hot tea that I threw all over my lap from one of those shocks. My swallow is weakening, I choke on liquids sometimes but never on food. The best news is that my breathing is still perfect!

The trick is not to feel sorry for myself! I obviously have good days and bad. A bad day is always health-related and can sometimes last for weeks. I heal very slowly, especially my muscles. but even on my bad days I manage to smile. I happily watch a lot of tv box sets so if anyone wants a heads up, give me a shout!

Mentally I'm good. I have great positivism and strength. I've got my beautiful 9 year-old daughter, Isabella, who keeps me on my toes! A fantastic support system, a loving family and amazing carers, so I class myself as very lucky. On the flip side, it's hard not to feel worthless. Especially as a mum, as I can't do much from my bed! Isabella is so strong-willed too, all I seem to do is give her lectures. Her dad takes her everywhere and whilst I love that, I can't help but feel left out. I miss the simple things like cleaning, cooking, driving, singing and dancing, taking Bella on adventures, nipping out and most of all tucking my baby into bed.

I don't work and I'm not involved in anything anymore. I'm too bloody tired to even think a lot of the time! I'm so fed up most of the time and it's hard to keep bad thoughts out of my mind. I sometimes do get very sad imagining my funeral and seeing my family grieving. It's awful and it just pops in my head randomly. I can soon pop it back, but it scares the hell out of me! The deep sorrow I used to feel constantly has now gone though, which is great. 

Thinking of all the warriors who have lost their battle to this disgusting disease and their families, especially all my friends. I will try my absolute hardest to hang on in there whilst waiting for this elusive cure. That's all I can do! Never give up, fight through the pain and torment every day. Take each day at a time and never lose HOPE!