Middle of March and still a long way to go!

I have met some incredible people in the last couple of weeks.

I haven’t been on here much but I blame it mostly on technology and lack of battery charger. As my laptop has been in a one month coma (as me) I have been out trying out a few things kind of new to the new me.

So here it is:

I have no longer got any taste in my mouth or a distorted sense of taste and smell. This makes me never hungry and never really thirsty.

My left hand side is still suffering and is not getting any better by a daily training exercise or ways of moving it, holding things etc I don’t have a lot of feeling of heat either and baths feel to hot on left side (like burning when it actually is lukewarm) and I still don’t have any real pain reflexes… Not sure it will ever return or be as good as right side. At the moment I am just a little annoyed by it, but I can also do things that my friends all find amusing or disgusting. Hard pinching is probably the easiest one. Pinch skin on left arm as hard as you can with right hand. Try to notice where the pinch is…. Naha? Not able to!

I am tired a lot. I can always get up and do things in the morning, but if I didn’t I could just as easily fall back to sleep again and stay asleep all day I think. (I haven’t tried it yet but I’m sure I would be able to). Sometimes I am more tired. Any arguments had between me and anyone no matter how small affects me in a way I have never been affected before.  Mostly I get tired by it. I don’t often break down but the other night I really did. And for the first time in ages I cried and not for anything other than pity for myself. I’d had enough of this half life, not being able to taste or feel things correctly. It’s incredibly annoying when you realise your smallest treasures you took for granted before just might never return.

A hot bath for example is one of them. The left side has no idea of the heat of the water and is always burning as if my skin is either burning or boiling. Not an easy treasure to reclaim and even more annoying as I normally don’t feel anything on the left side.

Reading a great book I now have a half answer for. I can avoid the double vision by reading looking upwards. So my Kindle actually works. Wohoo! On the other hand the kids books are awful as I see everything twice on angles and overlapping each other.

Eating potatoes is another NO GO area. The texture of potatoes is disgusting and only comparable to say sand for instance. I used to love potatoes in all kinds of ways. Oven roasted, mashed, boiled, in salad, chips, french fries and all these previous treats are now so un-appealing.

A lot of food go under the “previous-treasure-treat” supply and no longer I’m sad to say. How come when I used to be able to feel hunger at least I could look forward to somethings. Now I just stare at the food on my plate and pray to my inner soul please please let me like this. It’s forever changing as well. I used to love my lactose free yogurt with fruit and nuts and seeds and now for a reason unbeknown to me it tastes sour. And as I didn’t have this problem in Switzerland it’s obviously a new quirk of my brain damage.

My loss of memory from the previous years is also quite annoying. People I have met for the first time and had no contact with via Facebook or email during 2011 or 2012 are really hard to remember. I think I’m getting better and then bam, I go to a party where I should know the majority and I only know a few faces. I have stopped at these occasions to tell people mid fifth sentence “So sorry who are you? How do we know each other?” As it’s become a challenging game to me if I can retrieve who they actually are within the time I’m talking to them… So far it hasn’t yet happened.

Cycling is the next big thing. I got a bike in the bike shop the other day and cycled by myself without casing thousands of euros damage. I was very hopeful this could be a new way of getting around as I am now stuck to the indoors unless I ask for someone to take me somewhere. Then I got it confirmed, I am not allowed to legally cycle on a road. I guess this is what I feared but having it confirmed just slapped another fine on my already charged arse…

This is how I see it. I have been charged for some reason with this undeniable hard sentence and the worst thing is I don’t know why it happened to me or what actually happened to me. So avoiding it is impossible as far as I am concerned.

So what to do?

The most normal I feel is on a horse. I feel about 65%off the horse and at least 90% on a horse. Why is that one could ask? It’s second nature to me I guess. And my communication with the horses and other animals get through vividly and visually. No double vision there.

Today I had my first lesson with an actual instructor, Gosta Asker, the previous Chef d’equipe for the Swedish show jumping team has a holiday house on the island. I called Gosta last week and asked if he would mind giving me a lesson next time he was over here and it only so happened he is over this week! The lesson was fairly straight forward. But all I needed was confirmation of what I am doing. I think he was happy enough with my progress and he is coming back on wednesday for more lessons! Lara was very sweaty and I got a real feeling of pride. That all my hard work is actually for something and not just for nothing. There are so many thing I should be thankful, joyful and proud about. I might just sometime feel alone in this struggle. I know I am not as I have great support from my family but it sometimes bugs me. How they stay disconnected from the only thing that makes me feel alive and normal. I have explanations of one thing after another to why I shouldn’t see them not coming to see me ride as a problem but the truth is whatever they or other people say it’s never not going to bother me. I am bothered by it. And it might add to the tiredness I feel away from the stable, but what do I know? I am just a recovering epileptic-fit/brain bleed victim.

I have so many things I would like to do. Places to go, people to meet. I just have a temperamental left side and taste buds that won’t work.

Keep Smiling 🙂 There are hundreds of words for feeling glad, cheerful, delighted, ecstatic, elated, merry, rapturous, satisfied, upbeat or just plain old sunny! This world would never have that much jubilant highs unless we also had some lows. If you go through a low patch, remember that!

2 thoughts on “Middle of March and still a long way to go!

  1. Vännen, blir alldeles tårig av ditt inlägg, din ärlighet och frustration <3,,
    Förra veckan så åkte jag av vägen och slog en volt ner i ett ordentligt dike, hade tur som en tokig och klarade mig med ett ynka blåmärke på armbågen men efter ett par dar av att ha ångat på som vanligt så klarade jag inte av stress, inte alls, över huvud taget, det sitter i lite fortfarande och det lilla gör mig jättefrustrerad.. Jag säger inte att jag kan förstå vad du håller på och tar dig igenom men jag har fått en yttepytte inblick i hur det känns att vara begränsad och jag är så imponerad av din kraft och vilja,,, keep going strong <3

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