Category: Noise After Stroke

Losing your identity after stroke

Shelagh

Welcome back to my blog and even though it has been some time since I last wrote, I plan to be blogging more frequently, and I very much hope you enjoy what I have to say; so please feel free to share with others who may benefit from my words and perhaps leave me a comment as to what you would like to read.

In this blog, I would love to talk about the issue of losing your identity after stroke and specifically, the emotional side of stroke recovery. I was stirred to write this blog after receiving and reading a wonderful, insightful book about stroke identity (but I will come to that soon). Like many, I felt in the early days that my brain had been taken and replaced with one I did not want or even liked very much. I lost ‘me’ and so many parts of ‘me’ that I resented the person I was. My brain was slow and I had difficulty forming words and sentences. Bring on the depression and this made a great recipe for not being able to move forward with any form of positivity or focus. Does this resonate with my stroke survivor friends out there?

 

My brain worked in rhyme shortly after my stroke and this helped me enormously to deal with the emotions I was feeling;  such as the frustrations, forgetfulness and often sad times I was going through. For those who have read some of my poetry from my book A Stroke of Poetry, one poem entitled: Who stole my brain? is a perfect example of some of the emotions I felt following my stroke and I know these feelings are experienced by many stroke survivors all over the world. Who Stole my Brain poem.jpg 2

Perhaps this poem explains the seriousness of losing ‘me’ but a light-hearted touch upon the fact it is actually still OK to feel like this. As a Stroke Safe Ambassador, Motivational Speaker and passionate stroke advocate, I still campaign to have the voices heard of those who are struggling emotionally – what I refer to as one of the many invisible disabilities of stroke.

Now about this amazing book I mentioned and think we need a short drum role for the truly amazing Debra Meyerson and her recently published book Identity Theft – Rediscovering Ourselves After Stroke. I first connected with Debra, a former Stanford Professor, on Twitter some years ago, following her own severe stroke, as she was keen to conduct research with other stroke survivors. Many examples of those she has interviewed are featured in her book. Some, sadly, have not been able to accept their life changing stroke and thereby unable to move forward positively, but there are other examples of hope, inspiration and those who feel their stroke was meant to happen.Book cover - Identity Theft

Debras story and her own stroke recovery is inspirational and this book was written to help others cope with the emotional part of any stroke recovery. It follows her severe stroke that left her physically incapacitated and unable to speak and covers in detail, the emotional journey of her recovery, including the fabulous, selfless support provided by her husband and children.

I had many tears reading this book as although I am lucky to have been left with no physical disability, my early stroke recovery identified so much with Debras words, emotions and ‘day to day’ feeling of being lost in a person you once were and is the first book where I truly felt connected to what I suffered. Debra was kind enough to send me additional books so if you feel this is something you would like to read, drop me a message and let’s share the love and inspiration from the amazing Debra E. Myerson PhD.

Thanks for reading and always be ‘stroke safe’Signed copy Identity Theft

Shelagh

 

 

 

 

Sensory overload post stroke – it’s not music to our ears!

Shelagh

DoesSensory overload n’t every girl (well, soon to be 54 year old woman) like to go out, have fun and PARTY?! I know I always looked forward to a great night out with the girls, a meal out with friends and in fact, any social occasion really, as many of my UK girlfriends will still tell attest to! (Keep your stories to yourselves ladies). The Beastie Boys sang….”You gotta fight for your right to party  and it would be true that since my stroke, my party days diminished almost immediately but I am happy to say that I have been fighting for my right to party ever since, and gladly, the social scene for me is once again returning…slowly…but returning. I hear you ask…‘Why does having a stroke prevent you from going out and having fun?’ Not including the fact you are recovering and somewhat fatigued, there are just TWO words that affect all stroke survivors. SENSORY OVERLOAD

Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. Many stroke survivors experience this feeling, which causes further fatigue, migraines and the general feeling of being unwell.

Do you experience this feeling? Do you worry that it will never go away? As I approach my four year ‘stroke’ anniversary, I reflect upon a poem I wrote for my book A Stroke of Poetry. I was a very sociable person pre-stroke and loved going to parties and I found the frustration of not being able to continue to do this, extremely sad and overwhelming. Please read my poem and then I will tell you how I feel now, because it does get better over time. I am happy to say that I am once again a Sunshine Coast socialite!

 

The party animal no more

I used to love to go out socialising, with friends and family.

But nowadays, the evenings are somewhat of a chore for me.

I have to rest before I go, or I’m shot by half past eight

Forget it now if you want me to drink as well as stay up late.

 

I love my food and like a drink, but not in the same vein as before

If I try you’d have to pick me up from the restaurant floor.

The noise and chatter are just too much; I just don’t stand a chance

And as for any live music, well please don’t expect me to dance.

 

When I get tired, my slurring starts, it’s not too good to hear.

Then a burning sensation starts in my face and goes from ear to ear.

It starts off in my ears, moves to my cheeks and flows to my head.

The throbbing, burning pain I feel, I just need to go to bed.

 

The brain ache, well, it then takes hold; I can’t stop it, although I try.

I just have to excuse myself right then and there before I start to cry.

My friends, they know me now so well and do not despair with me.

Our get-togethers suit my tired brain, they are as quiet as can be.

 

The places that we go, where there is little noise

They help me so immensely, and I’m grateful for choice.

A party animal, I once was, but for now I’ll take it slow.

There are plenty of quiet places to choose for me to go.

 

So the evenings, they’re spent mainly home, cuddling with my son

Now, is that such a hardship as I’m such a lucky mum?

That poem was written during my period of post stroke depression, where I desperately tried to fend off my negative feelings and heartache because I wanted to be the ‘old’ me. I didn’t like the ‘new’ me as I couldn’t go out, I hated noise, I detested crowded spaces and noisy chatter. I began to suffer migraines with any small amount of sensory overload. My friends were supportive but I really did not want them to know how bad I felt.

My husband David and son Patrick adore listening to rock music but I could not listen to any music in the house for fear of headaches. I could only meet with one person at a time as the added chatter was too overbearing for me. So, what did it do? I made excuses. Yes, I didn’t tell friends that I was unable to attend an event because of my sensory overload, but I lied to them to avoid having to explain how I felt. I was embarrassed about the fact I could not hold a simple conversation without getting a headache. I could not visit restaurants or bars because they were noisy either with music or full of people all talking at the same time.a true friend

I recall an upsetting conversation with a close friend. I had declined an invite to an important event for her and she discovered that I had lied. Her reaction was “I understand how you feel. You can tell me the truth. I am your friend.” Gladly, she is still one of my close friends but I had to tell her that she didn’t understand. Unless you have been through a stroke, the anxiety of not being able to continue as ‘normal’ and the added stresses of going out, nobody knows how you feel. However, I did learn that good friends are there to support you and help you through the tough times, if you let them in. Once I realised that, my life became easier and friends and family accommodated my needs whenever we ventured into the big wide world of socialising.

This year, I went to my first concert since my stroke and saw the amazing Adele at the Gabba in Brisbane. I took my ear plugs but I didn’t need them. Yes, it was loud, but there was little chatter between my sister Patricia and my friend Angela so I could focus and listen to the music. It was brilliant. I sang and danced and had a ball. Last Sunday, I drove with my husband David to Sirommet Wines in Brisbane and enjoyed the voices of Cyndi Lauper and Blondie. Wow! This was very loud. Eventually my ears adjusted and again, because there was only David and I and not a huge crowd of people chattering away, I could focus on the music, sing loudly, dance stupidly and thoroughly enjoy the concert.

It was halfway through the concert that I actually realised that I had no ringing in my ears, no headache and felt well. It has taken me four years to feel this way and it felt good. It does take time. be patient and you will get there. I promise.

Here are five simple tips which may help you cope with sensory overload. For further information, please visit Enableme, which is managed by the Stroke Foundation and answers any problems you may have.

 

  • Take a sensory break – you may feel overstimulated by conversation, so excuse yourself politely. If you are outside of home, visit the rest rooms or take some air outside. If at home perhaps consider a rest somewhere quiet. All my friends know of my stroke issues now so most of all….be honest. They understand your needs.
  • Find a balance – it is important that your basic needs are met so please don’t feel you have to sit at home lonely for fear of overstimulating environments. Try things in small doses. It may not work at first but keep trying.
  • Set your limits – try visiting busy places at quieter times of the day, or meet with friends at a place that has no live music. You may need to limit the duration of conversations.
  • Give yourself time to recover – it may takes hours or days to recover from an episode of over stimulation. Ensure you take needed rest and ‘alone’ time is the best option.
  • Consider coping mechanisms to deal with over stimulation – have you thought of yoga and/or meditation? I have taken up yoga this year and love it. It certainly works for me.

Please let me know how you go and if you are struggling with sensory overload. Send me a message  with any similar issues you face and perhaps some tips on how you cope.

Until the next time,

Stay healthy and happy

Shelagh