Only a stroke survivor understands what a stroke suffer goes through

It’s been 15mths since I walked into the local Hospital saving “I think I am having Stroke” , they monitored me for approximately an hour and told to go home and come back for a CT scan in the morning. I come back the next morning for the CT scan and was told "nothing is wrong with you". I replied “well something is certainly not ok, I feel like I’ve been hit over the head big time and still trying to come to’ She replied “well see your GP then”.

I made an appointment with the next available GP. The GP seemed to know as soon as he saw me something was night right and insisted I get an MRI. Still ever so grateful for my GP insisting on myself getting an MRI on our first encounter.

The MRI revealed I had suffered my 2nd stroke. My first stroke we are unaware when that happened.

To this day I would've wondered why something was just not right, Like I had been hit over the head severely and couldn't make sense why my cognitive thinking and processing was no longer the same and found it very hard to articulate what I wanted to say, or speak it for that matter! That took several months to improve and was very frustrating when medical staff, partner and friends would not be patient enough to get your thoughts and words out. It’s like they all completely forgot your brain has just had a big blow to it, as in damage to the brain and we are not the same at the moment.

Another stroke survivor has said it perfectly "it’s like driving through a tunnel and coming out in another lane" you are left wondering what the hell just happened and why you are where you are now!

I was given no rehab, (I guess as I looked normal and not as damaged as others) I had to research and create my own rehab. In a future blog I will expand on what rehab path I created for myself to recover from stroke.

5 months of constant medical appointments, 2 or 3 each week, to find a reason why....no plausible reason was found of why I had suffered a stroke. They found a few months later I have a PFO hole in my heart and needed that closed or a 3rd stroke will happen.

In the very early days and for some months after suffering a stroke the brain trying to recover and activate its neuroplasticity, with everything you do, Its liking having electrical currents go through your brain, this odd popping and crackling type feeling going off on in your head, what appeared like wires in your brain, I would describe it as the same feeling as eating the lolly popping candy, a very strange and draining experience. Every time I went somewhere it would happen as though my brain was trying to remap everything I had already seen and heard before, the instant fatigue this would cause would be intense, it would send me very dizzy, nauseas and make me retreat to dark and quite space. 15months later it still can.

I still feel like my cognitive and process thinking and understanding are no longer the same, the mental filing system is just no longer there. It’s as if we have a 4 drawer filing cabinet that has been tipped over and we are left to pick it all up and file it away perfectly again! It’s a long process and are we sure it will ever be identical again...no it won't!!

I’ve noticed I have forgotten faces, names, even some of my relative names, sometimes I have no memory of meeting someone before and then realise after an hour or 2 later will them being in my presence, that I have met them before. It can be rather embarrassing and no doubt appear rude to others!

I now also have sensory issues, I severely suffered from light and sound after stroke. I would have to sit in completely dark rooms, no lights and would wear dark glasses if television or lights where on. Flashing/ strobe lights I can no longer tolerate, I feel like a seizure is coming on. I could not tolerate many sounds, birds, music, the sound of kids, chatting adults, any noise in general was very irritating and would be an overload on my brain to absorb and process what I was hearing, which in turn would immediately fatigue me and make me rather dizzy from processing all the sounds and noises, to the point I would drop to the floor covering my eyes and ears to block out the world ASAP!!!

Tweeting birds was the worst sound, I would almost scream over it to block it out.....it took some months, however thankfully that all has improved. Loud sounds, constant chatter, loud voices and some music I still cannot deal with.

Attending events or birthday parties is a big ordeal now, and very little people understand what you are going through and some can act like you are just complaining or ruining their time there, or being antisocial.

I've been blessed to not be physically affected as many other are, I suffered from spasticity on my right side in my hand, arm, foot and leg which was foreign and most painful and irritating! Thankfully that has eased a lot. However the spasticity can return after a long day at work….a long day now is 2 or 3 dog walks. Prior to stroke I was walking several dogs most of the day. I walk differently now to keep my balance and that creates a lot of pain in my back and foot spasticity. Its also very draining daily on my brain to remember how to walk and how to balance to keep upright, everyone takes walking for granted....I did myself, the amount of brain power we use to walk, only a stroke or brain injury survivor will ever understand!

Cognitive and balance I would say have been my biggest issues, having to re-gain balance to walk is my biggest issue....first was establishing that was the reason I struggled to walk any distance, despite looking perfectly normal. Once I worked that out I asked my GP to refer me to an Exercise Physiotherapist to regain strength in my right leg as I've lost strength on my ride side.

I started out with my own rehab by trying to walk a laneway, to work out how to balance without stumbling right and start leaning on a wall or fence for guidance. This took several months to be able to walk the laneway without becoming instantly fatigued and needing to escape into a dark room with no sound or light.

From walking all day long to this, was a massive shock to the system!!

The not understanding why I could no longer walk any distance at all, when from appearance nothing looks wrong with me, this was a hard one for my brain to get around and many tears!!

Then the frustration came of not being able to walk further than the laneway before I would instantly get dizzy, nauseas and fatigue almost every time, 6 months later I was able to walk 2 laneways. 9 months later I was able to walk 4 laneways to the beach, it was nice to see the beach again! I was too fatigued to walk back, I had my son come and collect me. 15months later I can walk there and back without getting dizzy and not too much fatigue after, massive improvement from day 1.

I relate stroke to being reborn as you need to relearn loads and loads of things.

Without the help or assistance from anyone, I had to relearn to brush my teeth, shave, butter my toast, cook, drive, regain balance to walk, there really is so many to list, I won’t bore you with them all and don’t have enough time or memory to be honest haha …..This subject could be a whole other blog!

You can feel very alone after a stroke, as many just don’t understand what you are going through, which is understandable. Some will ask and try to understand and show full support by keep asking until they understand. You often find yourself repeating to love ones what you are experiencing and going through each time you see them, some have shown empathy and understand and sadly some just feel you should be over it by now!

As we say “Only another stroke survivor can understand what we go through”

This is only a short brief review of my stroke recovery and will expand on areas in future blogs. I hope it flows and reads smoothly, as I no longer have that capability.

Hope you enjoyed reading.