My brain injury is classified as mild and as such I acknowledge how hard it was/is for those who have a more severe injury than mine. I found my own experience to be devastating, rewarding, depressing, enlightening and a great source of amusement.
Problem: Short term memory loss.
Every morning I woke up and did not know what day it was. Every day-sleep I woke from was just as confusing. Was it morning or afternoon? Was I alone or were the family at home? I often had to be asked the same question twice because I couldn't remember it the first time. I would be telling someone something and forget what I was talking about half way through. I had word finding difficulties. I bird flew towards the Lovely Husband and I one day until it realised we were there and at the last minute swooped away. "Stupid fish!" says I. I had trouble remembering new faces and new information did not sink in to that soft, spongy blob in my skull.
Solution: The Caring Counsellor advised me to keep a diary. Every morning I got up and checked the diary to see what day it was and was I supposed to be doing anything with that day. Eventually I would repeatedly say the name of the coming day in my head before going to sleep at night. I also keep a notebook and write things down. I have become the most "listed" person I know. If I needed to go to town I would have to write down the places I needed to go and in the exact order I wanted to do it in. These days I still need a list but the exact order is not necessary. I cross off what is complete and check and sometimes recheck my list.
Problem: Fatigue.
I was tired 100% of the time. When I had not rested enough I would become wobbly on my feet and need to hold on to something or someone so as not to fall over. I would become agitated and upset because my already compromised brain function would become even more impaired. Fatigue leads to all other problem areas. The brain controls all and so when it is fatigued all other issues become exaggerated.
Solution: My Caring Counsellor advised me that reading and watching TV/movies was not a form of resting your brain. Your brain is obviously working when you read and following a story line on the TV. Sleep and silence was the answer. Once I understood this it made a difference to my every day life. I did not find it easy to do, not being a daytime sleeper but it was absolutely essential and, to a lesser degree, still is. Accepting that I had limits was bloody hard and I still occasionally muck that up. I am stubborn after all.
Problem: Light and noise sensitivity.
Sunlight and excessive internal lighting was too much for my delicate sensibilities. Excessive noise was equally hard on me, and still is to a slightly lesser degree.
Solution: At home the family learned that the music or television or their personal noise levels, if too loud, would agitate me and my mood would quickly change. I learnt that a shopping centre was the worst place for me. All the extravagant lighting, the general noise bouncing off all those surfaces and the usually busy shoppers was way too much for my brain to deal with. Sensory overload! I avoided these centres and if I needed to shop I would do so in the outdoor or open street shops. I carried ear plugs for unexpected situations. I avoided peak hour and busy shopping times. Early morning was the best.
Problem: Problem solving, decision making and concentration.
If I was going to cook dinner but was missing an ingredient, no matter how minor, I was flummoxed. I could not work out an alternative. If my plans were interrupted or diverted in any way I became confused and did not know what to do next. If someone asked me a question or talked to me while I was doing something eg. cooking, I would end up not being able to cook and not comprehend what they were saying. Two things in my head was one too many. How male of me.
Solution: On Sunday nights I make a menu for the week. On a piece of paper I will write the day eg. Monday, under that on the left side I write the name of the meal I will be making eg. spaghetti bolognaise. On the right side opposite this I write what ingredients I need. Eg. spaghetti, mince etc. I obviously check if I have any ingredients already and if so it does not make the list. I phone the Lovely Husband at work and he brings home what ingredients I need. This has reduced my stress levels significantly and it saves money too.
If I was in town and an unexpected incident threw my plans skewiff, I would ring my Lovely Husband, usually in a state of anxiety, and after telling him my problem, which was quite often very minor, he would explain the best way to deal with it. He was very patient and always understanding and he saved my sanity many times.
The children took a while to understand that they could no longer come to me while I was doing something and immediately launch into a story or question me expecting an immediate answer. I either stopped doing what I was doing and listened or they would have to come to me later when I was free. With my friends and family I had to explain the situation and occasionally, gently remind them and it was all sorted. If people understand the situation they are more often than not happy to oblige you.
Problem: Unsteady or wobbly on my feet.
This was quite significant in the first few months of my situation. When I had been concentrating too long or had been too physically active my balance would give me grief and I needed to hold onto something still and steady to stop from falling over. (I discovered my daughter was not still and steady and so lousy as a leaning post).
Solution: The obvious thing was to hold onto the person closest to me, a wall or a piece of furniture. Amongst friends and family this could be made light of but I was always self conscious of it when out in public. One day my tired old brain hit upon an idea to buy one of those upright shopping trolleys on wheels you often see the aged take around with them. The beauty of this was that I did not have to carry any bags, the trolley carried quite a lot of weight and if I was to become wobbly it was the perfect secret way to stop me from falling down. I would sit it on its stand and just hang on to it. Looking ever so cool and steady with my trendy old person's, bright red tartan shopping trolley. I am sure I was the envy of other people my age who did not possess one of these fashion must-haves. It even had that three wheel design for going up and down stairs. Woohoo!
Problem: Anxiety, depression and insomnia.
Unfortunately this came with the territory. I have had depression in the past and according to the Caring Counsellor this made me statistically more likely to get it during this difficult time. The anxiety was understandable in the circumstances. Being not in control of your abilities or lack thereof is a stressful thing. There were hours and sometimes days of tears, there were periods of extreme anger and frustration. More than once I lined my head up to drive it into the wall (but knew I never would).
Solution: The Caring Counsellor saved my sanity. She gradually, over the weeks, advised me, gave me more information and watched and listened to me. She was in contact with my doctor (with my permission) and he in turn saw me regularly. For my part I had to share my feelings with them, tell them about my down times. This was essential. My doctor, a very thorough man, established that I was in fact suffering emotionally and to counter my insomnia and anxiety/mild depression put me on half dose anti-depressants. This medication helped me sleep and took the edge off my anxieties when dealing with the world. It helped me face every day challenges with a new courage. I was sent to a psychologist who, apart from giving me techniques to manage my negative feelings, also helped me deal with my mild phobia of dentists! That was a bonus.
My Lovely Husband was a rock! He helped me, defended me against those who would not try to understand, he was there for me every down time and up. My children adjusted quickly to new responsibilities and became my caring helpers. They made sacrifices because I was unable to manage any new activities they wished to take on and social outings were restrictive and very mild. They eventually considered my disability automatically when arrangements needed to be made or social situations were at hand.
My friends, some of whom have had their own difficulties in life, were instrumental in my mental well being. They are great listeners. The one piece of advice that I should have listened to earlier was "Be kind to yourself". Another one was "Allow yourself to grieve for what you have lost". I have learnt that it is OK to be sad or angry or frustrated (obviously for a prolonged period is not good).
I allow myself to feel.
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