My journey post stroke 2020- Now

My stroke was in may 2020, it took 4 days for the hospital to identify that i had a stroke as initially they just thought i was suffering a debilitating migraine.

My stroke affected the right occipital lobe and was complicated by RCVS.

I was in hospital for 6 weeks and then discharged to home with one visit from the post acute care team 7 days later.

I was added to lots of wait lists for physio, OT , neuro psych and so forth,(still waiting for these) i was given a brochure about what to eat after having a stroke and how to control blood pressure and that was all.

Covid also certainly complicated the care and services i could access and i know that for the first 6-12 months i was very depressed and anxious and the situation exacerbated my pre existing CPTSD.

As a single mum , everything was very hard and i felt very guilty that my children had become my carers for the most part.

I became a shut in and was no longer confident to leave home or do much away from the house because i looked fine to others but i really was not ok.

I had terrible balance , extreme fluctuations with all of my senses.

Lights and sounds were excruciating and smells where more than overwhelming.

I felt like i was permanently in a holographic chamber spinning at a million miles a minute, it took all my strength just to walk straight.

I had a period were i started to feel slightly more stable and i began going to the local pool and walking laps in the heated pool, this was the first thing that actually started to help me feel like i was physically recovering.

Walking laps in the hydro pool calmed my neuro pain and helped me build muscle strength on my weaker side , and it seemed to just overall calm my body and made things more bearable for me.

My brain though was not playing the game , i was suffering more and more from foggy brain and memory loss , bouts of time where I couldn’t string cohearnt sentences together and mental functioning was such a chore.

I was becoming afraid of what was happening as i felt my brain capacity getting worse and worse and i know i got grumpy ,agitated and angry i was very scared.

In September last year I underwent a Geriatric assessment and was told that the test i had just done was for people in there 70s being assessed for dementia , and a person of my age (41) should pass with flying colours, but i had not.

I was told i would need to undergo further extensive testing and referrals would be put through for this to happen.

The doctor also stated that some medications can have a side effect of brain degeneration and she questioned if the meds i was on were making things worse rather than better.

By late November i still hadn’t heard about any appointments and had failed 2 times to get NDIS support , i was at the end of my rope and needed things to get better , i decided i simply couldn’t keep waiting for services that never eventuated or took way to long because I can only afford the public system.

So a friend and i looked up the meds i was on and sure enough what the doctor had said was true, the meds i was taking did have a known side effect of brain degeneration.

So i decided i would ween myself off them and see what happened, i told my GP what i was doing , and followed the weening instructions to a tee.

With in just 2 weeks i felt like the clouds were starting to clear up and felt like my brain was starting to turn back on slowly.

By January my speech was much better and I wasn’t afraid of being lost , or disorientated anymore which was a huge thing for me.

The improvements each day spurred me to do some reading on brain health , brain degeneration and so forth and i thought you know what I can’t wait to be helped i need to help myself !

So by the end of January i thought i need to exercise my brain , to help it heal and the best way to do that is use my brain and create new neural pathways.

So i started looking for courses to study and on the spur of the moment enrolled in university as a part time student.

I needed to learn in a face to face environment because computer screens scrambled my brain and vision, and the uni offered this and also outlined supports for those which disability’s

The benefit’s would be that no matter how i went in the course , i would be getting out of the house, i would be advocating for myself and seeking supports , and i would be participating in society again plus exercising my brain !

The supports from the uni were great through the disability support service and the access equity team.

Ive just finished my first semester and each week i feel more improved, more like my old self and more confident to do things , and i felt my brain getting strong each week.

I got my final results yesterday and I passed ! I got a credit in one subject and a pass in the other and I’m thrilled !

I still need to take naps during the day , i still need to do my aqua exercise, still see the gp and neuro often , still get neuro pain, headaches, auras and sensory overwhelm but it is getting less and less and I’m managing it better everyday .

To all my fellow students i just look like everyone else and that’s ok , those who need to know , know about my stroke and they know sometimes i need time out to nap or just desensitise.

I finally got the call last week from the geriatric assessment team to say i have appointments next week for 5 hours of assessments and an appointment finally with a neuro psych.

The waiting for services has been very hard and certainly had an impact on my recovery , but 2 years on post stroke, ive taken control of my recovery now , changed my mindset and am making progress.

I accept that my brain may never be as quick or as high functioning as it used to be pre stroke and that’s ok, but i will keep exercising it to make it the best it can be so that i can be the best person and mother i can be for as long as possible.