EnableMe | enableme - stroke recovery and support

Tomorrow it will be 3 years since I had a massive stroke (two different types at the same time).
We thought that I have been making great progress and have been told numerous times by doctors and medical staff that I am extremely rare as apparently unbeknown to myself and my husband one of the two blood clots I had is a very very rare clot that had bled and damaged the brain, yes we knew there was some damage and changes to the brain but were told by the doctors that until I started to get better we won’t know what damage has occurred.
when I went to get the covid injection that was when I was told that I could only have the Phizer injection that because of the rarity of one of my blood clots I could possibly die, finally after numerous phone calls and my doctor stepping in I was finally given the approval for the Phizer injection at the hospital, I was questioned by nurses then the clinical nurse as they couldn’t believe that I had had a massive stroke plus a very very rare blood clot that burst and survived it, they called in a doctor who checked my health records this happened both times I had the injections both doctors said we have never spoken to someone who has survived what you went through, I looked at them both stunned thinking great I don’t know how to feel.

Everyday I have constant reminders, the bleed to the brain has caused a dull throbbing to the skull my specialist said that apparently it will always be there if I get upset or stressed it hurts more. One of my husbands friends wife made a comment to me that I should get over it, it’s not as if you are an invalid, that it happened and just get over it and forgot it. I was at first stunned and shocked then I got angry and told her what I thought and how I live with daily reminder and yes I can walk and talk BUT majority of my damage is unseen as I have internal damage. I wasn’t going into it with her as it’s none of her business, both her husband and my husband were shocked and what she said and told her so.

I still have problems and apparently most probably always will because of the damage to the brain. Tests have shown that my swallowing and shocking on food is a reflex reaction, my speech and thinking sometimes especially when tired or upset gets lost I will stammer or forget half way through saying things, cooking is a joke even if the recipe is in front of me my brain jungles it and things don’t work out how it should. My husband says he can tell when I am having problems by the look on my face. The biggest and dangerous issue we am trying to live with is food allergies, some food that I was able to eat before the stroke I am now having allergic reactions to main ones are common salt, garlic, ginger, mustard, chilli, peanuts and all things in the pepper family, it’s a nightmare to buy groceries as you have to look at every label if we buy takeaway or go out to a restaurant it’s a gamble we always ask what’s in it or please don’t put pepper or salt on things but have been caught out, there’s only two of our friends who understand and makes sure anything they cook that I am eating at their place is separate from everyone else’s, but sometimes accidents happen. I am now listed as an anaphylaxis on medical records, I take 180mg of antihistamine every morning and carry a smaller doses with us and an epipen wherever we go. This has baffled doctors why but they are saying it’s caused by the damage to the brain because of the stroke.

Sometimes I think this is no fun, people keep telling me that I have come leaps and bounds and yes I have days that I’m not 100 percent and they can tell those days but I know in myself that I have gone backwards in some things.

I have a wonderful husband and some great friends who keep good watch on me and I am extremely grateful to them, without them I wouldn’t have gotten to the way I am today, though my husband and doctors and best friend will say it’s because of my determination and stubbornness and not saying I can’t do it,

thanks everyone for reading my blog.

Backwards , no , you just realise now how bad your stroke was and how its affected you from doing things , best part of it is your not dead , its a long road but then you will realise your limitations and find a way around them. But going backwards no , you have more than likely gone forward if anything , remember you survived and some others didnt !! Remember think positive .

Hi Yvonne,

Thank you for sharing your blog with us.

It can be hurtful when someone downplays the challenges we face. Often people have good intentions. I think sometimes people just feel uncomfortable and in wanting to make us feel better, they actually make us feel worse.

Hidden disabilities can be difficult for others to understand, and difficult to explain. They are just as significant as physical disabilities and can cause just as much grief. I was glad to read that your husband and friend offered you such good support in that situation. I think Garry has some wise words in his post too.

We have a podcast on hidden disability that may resonate with you. Podcast- Hidden Disability

It certainly sounds like it has been a big health event and you are just starting to get the whole picture of how it has affected you. If you do think you have gone backwards sometimes, know that this is okay. Stroke recovery is never a straight line.

I am glad to hear you have a wonderful husband and some great friends. This makes all the difference, as well as a ‘can do’ and determined attitude like you mention!

Give us a call if you ever need anything or just want a chat Yvonne. You can StrokeLine 1800 787 653 (Mon- Fri 9am- 5pm AEST) or email us on strokeline@strokefoundation.org.au

With kind regards,

Kath (StrokeLine)

Hi Yvonne

Thank you for sharing your experiences. I certainly resonate with the feeling of going backwards.

I had a big right sided stroke in Oct 2020. Like you I can walk & talk. I suspect most people would never know looking at me. If they lived in my head they would indeed know.

I have days, several on end Sometimes where I feel I am back in the 1st couple of weeks post stroke. Any release of stress hormones in my brain will usually take me there. All of a sudden my hands won’t work properly, any fine motor things needing my fingers especially left hand are almost impossible and my level of frustration is thru the roof, i can almost feel the front part of my brain shutting down, which means I can’t think things thru or keep track or remember. Then I usually get swamped with tears of overwhelm. Often followed by berating myself for not coping well enough. I forget so easily that I had a big stroke, it all makes perfect sense when I look at it thru those eyes. Of course I struggle at times. But being gentle with myself is the best course of action. I am extremely grateful I survived and have little physical impact. But there are days where I have no idea how I am going to live with the unseen disabilities I have as a result of the stroke.

As we are often told all strokes are different & we all respond & cope in our own ways.

One of the best things that I have found to help regulate me has been Neurofeedback. I think anyone that has suffered the trauma of stroke would benefit. The more they are finding out about the brain and its plasticity the more brain training like Neurofeedback is being used and studied.

I wish you all the best. Go easy and be well

mary ann

Hi Yvonne, thx for sharing. I learned that every stroke is different and so is the path of recovery. What helped me is the realization that I'm not what I used to be. It took me some time to get there and, most importantly, to accept my losses. However, I've explored other ways of healing, like meditation, music, reading, etc. Take care!

Thanks everyone for your kind words and sharing your thoughts it helps to know that there are other people who understand what and how I feel.

I know that I have progressed in leaps and bounds after I woke up 5 days after my stroke and had to learn how to do everything all over again, eating, talking how to use utilities again etc my stubborn and determination got me through and still does but the hidden damage is hard to deal with but I know I will eventually work things out. My husband says I just have to learn to be pat