“So sorry, Jade!”

Dads visit 779[1]

I wanna talk about the stress and strains caused by stroke – and its effects on relationships. And for this, I’m going to be completely honest while trying not to sound self-pitying. A tall order judging by the way I feel just now.

The thing is, everybody sees my situation, looks at my beautiful wife and possibly thinks, “It’s ok for them!!” Well, let me tell you; it’s been hell. I’ve screamed and shaken like an epileptic – a common effect of stroke if you get upset. Jade and I have had to sleep in separate beds so I can get my 5 hours undisturbed sleep, which I desperately need, as I work and push myself so hard.

Because of my speech in the early days and sometimes even now when I talk to Jade, there’s no tone in my voice so I sound like I’m moaning all the time, even if I’m not!! As a result, a lot of situations end up in arguments and, slowly but surely, it chips away at your partner. It’s sheer hell!!

In my case, I’m over the worst now but I’ve left Jade wondering if I’m her man anymore – or am I a totally different man to the one she fell in love with?

Well it’s like this: I don’t think you can walk away from a stroke without in some way changing the person you used to be when you may have been carefree, enjoying life and never really worrying….But the shock of losing your independence or ability to choose to move a limb or not is the scariest thing in the world. BELIEVE me!!

Luckily enough, I’ve had a lot of help and support from both mine and Jade’s family and friends. And I’ve had the will to fight to recover, for which I’ve had to be an obsessive, annoying, pain-in-the-arse guy to achieve!

This is why I have to say this to Jade:

“My wonderful, beautiful Jade,  I  am sorry for all the pain of these years since locked-in syndrome devastated our lives, sorry for not being able to give you the attention I should have done, or listening to you as much as you deserved. For not being calm instead of snapping as I normally did through the sheer frustration of not being a man; for not bringing the money in, for relying on my wife to pay the rent.  For not being able to forget about the movement I lost in my arm instead of stroking the hair over your ears.
I am sorry for everything, Jade. I’ve had to be in survival mode ever since I woke up from my coma.

I must get back to my wife!
I must get back home for her!
I must get walking!
I must get strong!
I must fix things!
I must stop thinking “I MUST!”

It’s become an obsession, see? And now I’m almost there,  I smell it!
It takes a long time to be happy with yourself after a life-changing event like stroke, but I feel I’m getting there at last.

I hope you can forgive me, Jade. Thank you for sharing my journey and for helping get back on my feet. You are an amazing woman!”

 

 

 

 

 

 

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After a chat with the Mayor, I’m getting the needle!

What a ridiculous week of the highest ups and the lowest downs!
I don’t really wanna talk of the downs right now ‘cos they’re too massive.

But one of the ‘up’ highlights was meeting Tracey Roberts, the mayor of my local city, Wannaroo. What a wonderful lady! We had beans on toast and coffee and a good old chat. LOVED that even after 30 years in Oz, she’s still has traces of a Manchester accent! Like me, you can take the boy out of Manchester but not Manchester out the boy – or, in Tracey’s case, girl!!

I know Tracey from my Northern suburbs stroke group although we’d never really talked properly before today!! In fact, I was surprised she had the time to see me, knowing how busy she is.

I was hoping she could help me find a way into the world of public speaking, as I badly want to raise awareness of stroke, which is the leading cause of disability and, as a young man myself, I want to appeal to my own age group and younger.
She was great, so helpful – a genuine member of the A-Team; all over it!!

I’m so grateful, Mayor Roberts. You’re terrific!!! “Thank you!!!”

I went away feeling I had a direction through the fog. To tell the truth (and without going into detail) I’ve been a bit lost over the last few days. My world fell apart suddenly and dramatically; that’s all I can say on the matter.

Anyway, on the way home from my meeting with Tracey, I popped into Heights Medical practice to see if I qualify for acupuncture to release this sodding tendon; to make it relax. I thought I’d win by building up the muscle up and overpowering the tight tendon, but so far me and my personal trainer Cheri are finding it hard. She said. “You need to get this tendon switched off.”

I’m amazed acupuncture can help me. I’m allowed 5 sessions under my Health Care card (pension card) – stop laughing all you UK mates! You said I was a pensioner, “old before my time!!” So excited to see if it works although not too keen on being a pin cushion again after all the needles I took at Shents. But if it works…..!!!!! Any stroke survivor can feel the vibe – WHAT IF!!!!

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OUCH!

Stay tuned – I’ll let ya know !!

“Never be ashamed of a tear or two. It shows that you are human”

Further to my reprimand at work the other day for breaking down in tears (see previous post), I’d like to share with fellow stroke survivors this supportive email received from my friend Sally Allen, a nurse and co-ordinator of a local stroke group….

“Unfortunately, Peter, in this world we are just a number.  No longer is there a heart.  Nobody recognises employees whom have given years of dedicated service; they just pay them off when they feel like it.

My son’s job is to fly up to Port Hedland, and numerous other mining sites, to tell the miners, at the end of their shift, that they don’t have a job.  It doesn’t matter how long they’ve been there.  Fortunately my son is not employed by the firm they work for and does not know any of them.  The employer is too cowardly to sack them so they get a stranger to come in and do their dirty work.

Having any kind of stroke leaves you vulnerable to incidents of weeping with gratitude.  It’s part of the medical damage.  You just remember that you are the miracle man, you are a survivor.  Less than 1% of people suffering Locked in Syndrome have survived.  Despite all odds you came through. You have worked your guts off to get to the stage that you are at.  We are so proud of you!

One day something tragic will happen to those who state that they are uncomfortable with these situations.  Let them try to walk in your shoes….they wouldn’t last the day.

I am disgusted with the attitude of the people who show no sympathy or understanding of the devastation resulting from ‘stroke’. Not that I am a vindictive person, but I would wish sometimes that they would bind one arm and one leg to their body and get someone to tie them to a wheelchair just for half a day to feel what it is like.  They may show a little more tolerance then.

When I was nursing, we had to inject ourselves to see what it was like before we were allowed to inject patients (we certainly became gentler when we administered!)

Look for something else as quickly as you can because your employer is heartless and should be reported to the disability service.

Never be ashamed of a tear or two.  It shows that you are human.”

 

 

 

 

 

A smack in the eye at work

So upset right now!!!!! Just clocked in at work and thought the day was going fine. All smiley “Morning! How are you all?” before proceeding to brush the floor as always and feeling very happy about stuff – Spring, sunshine, getting a bit better, feeling a lot stronger…When bang, it all changed.
I was told that my little breakdown on  Friday (30 seconds if that!) was ‘inappropriate’.

I was touched, ya see, that someone had given me 10 free personal training sessions at the gym and I couldn’t help it: 2 minutes after the phone call from Cheri I broke down in tears. There were a few people around at the time, so I explained what had happened….which made me cry again.

Now for the last 3 years I’ve reached out to people in pain….sobbed my heart out like a kid, but I don’t breakdown as much these days as my continuing recovery helps me to control it better. But stroke really messes your head up, see?

Anyway, I was told that my behaviour on Friday was “totally in appropriate” and the person concerned was “not comfortable at all”, even though I had said ‘Sorry” straight after the breakdown.

I felt like a naughty kid being told off in the playground. I  just stood there in shock wondering what to say!!! Had the tone been different, I could have understood, taken it on board, but it was delivered so seriously, and all I could think of in reply was, “I don’t know what to say. I’m sorry.”

The reality hit me how your actions, no matter how small, can affect other people. I can’t do that again.

Damn!!!! I’m always nice to everyone, friendly, would do anything for them. I just didn’t expect that, never even saw it coming!!! So I said “Sorry” yet again then had to leave to control myself.

I will go back this Friday; just have to be really careful!
It’s a learning curve I tell ya!!! I just was reaching out. I never meant anything – I was CRYING for God’s sake!

I hate this stroke!!!!

 

What the best-dressed sun worshippers are wearing in Perth this season!

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What a day !!!

Finally the UK has given us the sun back! 

Cheers guys – You had a good run you have to admit, Ey?!!!

It’s all mine now !! Hahahaha ! Bit of vitamin D…. ohhh yeah !!!!

Stay safe out there x

Marauding mop buckets and an unexpected gift

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OH MY GOD !!!!!

Just got tell ya this…….

I was at Cookies and More, the cake factory, cleaning, doing my usual thing, and cursing my arm while refilling the paper towels. I was bloody cursing my arm ‘cos I couldn’t quite turn the key on the top of the dispenser. Actually I can do it, but my left arm’s playing the game see? whereas my right arm just hates gravity right now. I stretch it loads because I’m aware the tendon’s too tight as well as having pathetic muscles!!!!!

So although I can turn the key now, it’s still so hard. Anyway, after a lot of swearing and a big sigh, I got on with my mopping. Have noticed since I started work at Cookies that things had changed. Well, one thing had – the mop bucket!
Here’s what I mean: When I first started with the old mop bucket, I could use two feet but now you have to stand on the lip with one foot in order to push the lever down with other foot. (This is, of course, a PROPER industrial-strength-type mop bucket!)

Well, it’s a balancing act!! Holding on to a wall with one hand while the other arm’s lifting the mop up, and having one foot on the lip while the other’s on the press down thingy is not how I imagined spending my day! What makes it even more tricky is having to squeeze the mop head by hand,  squeezing the two pieces of plastic together before using it. (A video of the procedure would be easier  – this writing malarkey is hard!!!)

Fortunately, it’s proved good therapy, as now I can almost balance without a wall – at least for a second!! But that’s not why I wanted to write this blog…..Bloody mop buckets!!! Hardly front page news are they? Hahaha!

No, what I really wanted to tell you was what happened next!! This absolutely blew me away….

Get this!!!! Cheri, a personal trainer at Good Life Health Clubs in Perth, called me. I assumed she wanted me to clean her windows or something, but NO! She said, “Hi Pete, just wanted to call ya to tell you that someone who’s read your book has been inspired by your story and wants to help you in your battle.

‘So,” she continued, “they’ve paid for you to have 10 training sessions with me in the gym!”

Well knock me down with a feather duster! I dropped the mop and stood there in a state of shock not knowing how to react! After all this time, I’ve felt it’s been me against the world and now….!! “Wow Cheri……”  was pretty well all I could say.

I must admit, after the first appointment was made and I put the phone down, I sobbed- YES, bawled my eyes out!!!!! Ssshhhhh….I couldn’t BELIEVE how kind this was and the benefactor was totally anonymous! I still can’t BELIEVE it!!

I’m so so grateful to have a little help – just for someone even to NOTICE me. This generous gift will help facilitate this @&$&@&@ arm of mine! And I’m open to help because I just couldn’t afford these sessions myself!

TO WHOMEVER YOU ARE OUT THERE!!!! I KNOW YOU KNOW ME!!!
AS CHERI SAID, YOU KNOW HOW PROUD I AM!! So there’s a clue!
I am so touched by your kindness which truly made my day

THANK YOU XXX

You are angels (1-2?) Whoever you are!
God bless you in your life! You’re simply wonderful!
THANKS XXXXXXXXXXXXXXXXXX

Cheri Truscott is a lovely woman and I look forward to our first session!

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To Jade – the beautiful, wonderful woman who has always been there for me

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This blog is for the woman who’s been there for me for years, the beautiful, wonderful woman to whom I owe my life!

I feel I should say a few words to strengthen our marriage, as I feel it’s not been easy living with me – not because I’m a bad guy; just because, Jade, like me you’ve been forced into a change of massive proportions.

Maybe I no longer seem the same guy I was before, but that guy’s still there, just different. I have to be you see? Stroke has knocked the crap out of me; I had to become serious, get angry, FOCUS! Trying to deal with moving again, lack of emotions, the loss of my old life…..something only stroke survivors would really understand.

I don’t smoke or drink any more so I don’t enjoy the same kind of gatherings I once did. The new me wants to go out for meals and a good chin wag and…..oh, I don’t know… anything really.

I can’t change you.  I HAVE changed but if you look close I am a better man, I really am and I want to still take care of you and love you!

Sorry I’ve held you back these last few years but I really BELIEVE we can bounce back stronger than ever. We ARE strong, we’ve proved that – and if we keep going it will only become stronger.

I love you Jade; together we can make it spunky!

BELIEVE in your Pete!!!!