EnableMe | enableme - stroke recovery and support

I recently had a 'mini' stroke. On Friday 17th April I went in for an Embolisation due to coughing up blood (I have Cystic Fibrosis). I came out with right side numbness and tingling from my breast down.

On Monday I went for an MRI of my brain which determined a number of small strokes had occured. They also think there is one in my spine due to the symptoms I'm showing, but they can't see it on scans.

I am waiting to be accepted to the rehab ward and be moved for intensive rehab.

I am slowly learning how to walk properly - luckily this was the only thing affected. I still have my upper body and speech.

Any advice would be great, going forward.

So sorry to read of your experiences. My first thought is be kind to yourself and give you and your body time to adjust to what you have been through. The stroke acronym FAST has the T for time and I also think this is so important post stroke. I found I was so tired after my stroke and needed to remind myself taht it was my brain taht has been damaged and just as we give a broken leg time to recover we need to do the same for our brain.
You also need to allow time for you recovery. Don;t expect everything to improve all at once and be prepared for things to improve and then maybe slide back a bit. I'm coming up to 7 years post stroke and still have moments when I realsie things have improved from where I was 6 months ago.
It's great you've found Enable Me, ask as many questions as you like and if you feel up to it let us know how you are getting on
Toni

Hello Rhij,

Thanks for reaching out to the online community here at EnableMe to share your stroke journey. Recovery from stroke can be really challenging, and it sounds like you have had a lot happening lately. Everyone's stroke is different, which means recovery time will be different too. What is the same, is how important it is to have the right support and information at every stage.

Your hospital may have provided you with the My Stroke Journey booklet. If not, it can be viewed online, or contact us here at StrokeLine and we can forward you a copy. My Stroke Journey provides a comprehensive summary of stroke, stroke prevention and stroke recovery, and is complemented by a number of fact sheets that are available here. EnableMe has a lot of information for recovery post stroke, including one on Leg functioning with a great video to watch. TheEnableMe podcasts are another good option to learn more about stroke, and hear from both health professionals and stroke survivors alike.

Please feel free to call StrokeLine on 1800 787 653 if you would like to talk more about your rehabilitation and recovery with a health professional. We are available from Monday to Friday, 9am to 5pm AEDST. Don't hesitate to contact us by phone, or email: strokeline@strokefoundation.org.au

Warm regards,

Annabelle and Leah

StrokeLine

Hi there,

Waiting to hear about the outcomes of tests, waiting to be given the opportunity to go to re-hab for help to walk. A lot of waiting and while you are waiting how are you feeling? Not just about your stroke, but about the combination of everything that this experience is bringing up for you?

For me, keeping track in my mind (I had no way of communicating after my stroke) was important to me as a way of bringing my whole self into each new day. I needed to be seen as a whole person, not just an object in the bed who needed ob's and personal care.

Maybe recording, journaling in hand written form which allows you to be really free about what you are thinking might be of comfort.

Comfort is important in times of uncertainty. Not knowing what to expect can be really hard as you no doubt already know :-)

I had my stroke at 22 years old and I turn 50 next month. Life is good and it has been a lot of work, learning, adjusting and never ending hope to get me to where I am today.

Practical things like -

1. What was your stroke called and where in the brain was it. (Something to record and refer back to as timed goes on when needed)

2. How you are being included in the discussion of what will happen once you are in rehab

3. Keeping track of discussions, information and decisions made about you by others. Which includes any new medication needed.

And please excuse my lack of knowledge about cystic fibrosis, so I would want to know, that the opportunity to meet ongoing needs for cystic fibrosis will be taken into consideration at every step of the way.

And yes as Toni has mentioned above - be kind to yourself. There are so many people with lived experience of stroke who would be sending you all the best and wanting you to know they are with you in spirit as you continue on.

I wrote a poem a few years ago which was after I attended a forum about Young Stroke Survivors it's called HOPE.

HOPE

Someone gave me hope today,

So please do not try to take it away.

I need hope to enter my wounded spirit.

Love, Care and Compassion to fill it.

Hope will bring me dreams to fly,

It will give me laughter and make me cry.

Hope can conquer my darkest hour.

Four letters which release enormous power.

Power to live my life, give to others and heal.

Let hope not be a dream.

Let hope be real.

The end.

So, take care and there is Strokeline which you or family or anyone close may like to call and talk to someone about what is going on. They are open from 9am-5pm Monday to Friday.

1800 787 653.

All the best.

Sue

New Stroke Patient

1800 787 653.

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