What’s life like right now? Share your thoughts

StrokeLine
StrokeLineon Wednesday, April 29 2020
5 Comments

Hi everyone

 

We are putting together the next edition of StrokeConnections newsletter. StrokeConnections goes out by post to 10,000 stroke survivors, carers and family members. The people who get it are mostly not online. The idea is that StrokeConnections arrives in their mailbox, and they can have a cup of tea and read stories about stroke and stroke recovery, as well as getting advice from the StrokeLine team.

 

With COVID 19, this edition will be an important one.  

 

Which is where you come in. I would love to share your thoughts with our StrokeConnect readers:

 

- What’s life like right now? What’s working for you? What’s difficult?

- Has your stroke experience and recovery influenced how you’ve approached life during COVID 19?

 

If you’d like to share your experiences, please leave  a comment. I’ll check with you in a private message before using them in StrokeConnections, just to make sure you’re happy with how I’ve edited them.

 

As always, StrokeLine is here if you need us.

 

Call 1800 787 653 Monday to Friday 9am to 5pm, Eastern Standard Time

 

Email: strokeline@strokefoundation.org.au

 

With kindest regards, Jude from StrokeLine

5 Responses

For me its the pits , but hope its better  for everyone else. Why complain , your not dead yet.

Hi Strokeline,

I had my stroke in October, 2004 because of a viral infection after a minor operation. I was in Congestive Heart Failure & had Pneumonia prior to the stroke, none of which was picked up. As my stroke was being assessed they found that my Aortic valve was faulty from birth & was leaking back into the ventricles, causing shortness of breath & decline in physical ability.

Over the years I've found that people, even one's I called friend have stopped calling or inviting me anywhere. I'm independent anyway & as I'm getting older I'm getting a bit like "Victor Mildhew"(?spell) ..... grumpy. I used to be a Corporal in the Military Police & a Paramedic in the British Ambulance Service so looking after myself comes as second nature. Having a stoke doesn't make it worse except it does make me a High risk patient & means I take a bit more care with hygiene & distancing. A perk is I've finally gotten onto the Priority Order list with Woollies😁 (now shelves have t/rolls😄😄).

After my 2nd Open Heart Surgery to replace my Aortic valve in May, 2019 I developed an Arrythmia (Atrial Fibrillation) which reduces the amount of oxygen getting to lungs, etc & causes breathlessness & sweating under very minor exercise. Added to my stroke symptoms of tiredness, some memory loss, difficulty finding correct words & spelling, it makes for a quiet day. I have 2 dogs that I try to walk daily but some days I can't manage it. I also have Arthritis in both knees & there is no cushioning left in my right knee, very little in my left knee. My right knee has given way a few times. 

I do find on occasion that not having simple choices is a bit difficult but on a whole, I'm surviving & I'm quite happy to be saying that in a Pandemic.

Julie

South Coast, NSW.

Thanks Garry and Julie for your replies to my post. It's great to see everyone connecting on EnableMe at the moment.

Garry, StrokeLine is here Monday to Friday if you need a chat or if we can help in any way.

Take good care everyone, Jude

Seeing the world suffering, grasping, gasping and struggling to create some sense of reassurance while responding to  life changing circumstances for the future  world was what I took in when the  Coronas Virus situation began - I thought broadly first, beyond my personal situation and then I turned to what was around me.

Was I safe - yes safe as I could be at this time.

Were those near and dear to me safe - yes, from what I knew.

Was I following what was needed to continue to be safe and not cause harm  - I hoped so, with so much shaming and blaming in the media, I tried to limit what I took in. Just let me know what I need to know. I took refuge in all the people doing the best they could and hoped I wouldn't be on the receiving end of any of the shame when I went out to fulfil some sort of need I had.

I called on skills, patience, mindfulness, compassion, reflection, hope, self care, connection which was relevant to me via technology, love - so much love for our world.

Sue xo

 

 

 

 

 

 

I've found this time to be interesting; a moment to observe, grieve, reflect and be tahnkful. To begin with I'm meant to be in France celebrating my 30th Wedding Anniversary. We were meant to leave on April 22 I'm so glad this all broke before we had started our trip as I would have hated being away from the security of Australia. 
My life has felt a bit like it did before I was on NDIS, and had access to a driver, as I chose to self-isolate so I was stuck at home with no way out. But then came the reality of what it meant. Having two adult children at home and a married daughter we had to have a discussion with them about how it looked. We had a bit of a family meeting on my birthday and the decision, before it was made for us, was my eldest could no longer visit.
My youngest daughter's partner was just starting training at the police academy and so the decision was he could no longer visit nor could she go to his place as there were too many people there for her to then come home. They now meet up for walks, and if we go to our beach house then he can come over but he's not allowed in the kitchen/ family room. Sadly his grandfather died and she was unable to be there for him at the funeral and since then my own grandfather, in the UK, died 25 April. I've found it hard not being able to go and see my mum to support her.
I am surprised at how easily I have adjusted to doing pilates via Zoom rather than face to face and this has really demonstrated how telehealth can work. I miss my weekly art lessons but at least I can continue doing it at home and my art teacher is just a msg away if I need some advice. 
Last week I was asked to give a presentation at an AGM, again via Zoom, and that was strange. Not being able to walk around and see everyone responding to what I was saying  made it quite interesting.
I believe we are so lucky to be living in a country that has responded to Covid19 the way it has. Within the people I communicate with it seems to have brought a sense of calmness back to their lives as they're no longer rushing from one thing to another and I wonder what will they do when life returns to having all activities available again? Will people have re-assessed hwat they think is important? Whether their children need to have a daily activity to attend after school? Will those that have started family game nights etc continue to do so? And will the amazing sense of community that we saw for ANZAC Day infiltrate into our post Covid19 lives?

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