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Have I done “this” to myself?

The great unanswerable question.

What if I have?

I created this blog to try to keep me honest (if not sane). I wanted to share my tales with you (note to self – get some real friends haha). Maybe some of it will resonate with you, maybe it won’t. Feel free to let me know. But be constructive, please; there are enough real bitches in my day-to-day! As with most folks, in my experience, my skin is thick and thin. Some days negativity just washes over me and other days it sends me quivering into the corner with alcohol of choice to contemplate why everyone hates me and is it because I didn’t do (fill_in_the_blank) when I was six?! So, be constructive, be pleasant, be funny, be quirky, be you. Just don’t be nasty for the sake of it, please – you’re free to jog on to the next blog any time you like.

I’m 47 and yes, I should know better. I have no kids, 3 cats, a mortgage, crippling anxiety,  epilepsy, MS, credit cards and a 9-5 that is never 9-5. I don’t have a criminal record, I have travelled some and my sarcasm is more than occasionally off the scale. I’m overweight, I have a potty-mouth and opinions coming out of my ears. But, I’m not nasty. I care about people more than I let on and though I often believe I prefer animals to humans, I’ve never been outrightly or deliberately cruel to any living creature. Basically, I’m an ok person. I have neither celebrity nor notoriety. I’m not poor, yet I’m not financially rich. I have lost my way a little in life. I have a need for a reset. I believe “focussed” has a double-s and I was always taught there are 2 spaces after the full stop at the end of a sentence. However, language is fluid and while I will never resort to a single-s focussed, I have bowed to single-space-after-a-full-stop pressure.

Recently, I decided to start having an organic meat and veg box delivered weekly. All part of me trying to be healthier, cut back on single-use plastics and enjoy lovely, fresh, local produce. Awesome. So, the delivery arrives a couple of days ago, jam-packed with fresh greens, grass-fed beef, natural yoghurt, eggs…you get the picture. I felt a swelling of joy and healthiness just welling up in me as I gazed at my bounty. Yesterday, surrounded by this wonderous nutrition, I decided to have toast, peanut butter and red wine for tea. The glass of red wine turned into two bottles and today I felt not just jaded but disappointed that I couldn’t be arsed to rustle up a quick whatever with all the gorgeous food I had or even stuck to the glass or 2 rather than the bottle.

Have I done “this” to myself? This is the question that is keeping me up nights at the moment. A throwaway comment, an endless supply of medical opinions, too many books read with too many differing approaches, too many conflicting ideas and my perceived intelligence is just not cutting it. I do the research, I read the opinions, I ask the questions and still, I can’t help wondering if there was something I could have done differently that would mean I would not be suffering from MS.

Epilepsy, it took a while, granted, but I’ve come to terms with it. I’ve learned to live alongside it. I don’t like it but compared to MS its a known quantity. I know it will hit me out of nowhere, it will knock me on my arse, I’ll spend a fair amount of time depressed and then I’ll pull myself together, get back up and move forward. MS though? Nope, I don’t know which way is up.

Maybe its because I sort of grew up with epilepsy, google didn’t exist and I wasn’t tying myself up in knots trying to figure out which scientific, peer-reviewed journal piece is the most reliable. MS hit me. Hit me hard and then ran away laughing. I feel like a baited bear sometimes. Chained. Tormented. Beaten. There is nowhere to run and the groups dedicated to saving and supporting can only do so much. MS is the stick, there is no carrot.

As is often the case when my mind is in overdrive and I’m desperately trying to find a way to answer a question that can’t be answered; I’m thinking about the past. Particularly friendships. I’m a big believer that not everyone who comes into your life should stay forever. Yet there have been some people that have been in my life for a period of time that I can’t quite come to terms with how they left my world. Sometimes, people just drift away naturally. Folk move away, get married, travel, whatever and they drift out of your life. There is no deliberate severing of ties, no harsh words, no event that causes a fracture. It’s all very natural and perfectly normal. Then there is the intentional ending of a friendship. There is a specific event or series of events that means the relationship is no longer healthy, reliable and productive. Then there is the loss that you don’t really know what happened or how it happened.

It’s this last scenario that has been on my mind a lot of late. I don’t really understand why some folk left my world and why I allowed it to happen. Now, there aren’t many that fall into this category, only 3 in fact. But I’ve never quite been able to understand what happened with the friendships. I wonder if they feel the same way. It doesn’t do to rake over the past. Yet, for me, the past holds the answers. It’s like I have this need to look back before I can look forward. I need to understand where I went wrong. And, in the same way, did I bring MS on myself?

Could the issues I have that fall under the scarred umbrella of MS, have been prevented. Did I do something wrong? Could I have ensured the health of my genes? If I can find those answers, could that mean I can reverse the damage done? Or is it too late? Is all I have left acceptance?

Unanswerable. Not unquestionable.

I’m reading this back through and it’s so disjointed. I apologise for that. I’ve opened my mouth and let my tummy rumble. Heyho.

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Two Neurological Conditions….Lucky me!

As is becoming usual for me, nothing is ever straightforward. I have been confronted by yet another birdshit on the path of life and I’m pretty sure this one was dropped by a bloody condor!!

A few months ago, I was a perfectly happy epileptic. Well, maybe not perfectly happy, but things weren’t too shabby in my little bubble. I’d started going to the gym and working out with Edinburgh Fitness Solutions (EFS). I had more energy, I had more patience and I had a great trainer who is a lot of fun to be around…(thanks, Daniel :o) ). I felt like everything was looking up for me, and even if it wasn’t, I felt more able to cope. The depressions were lifting. And then, my vision went AWOL. That was the beginning of a disastrous 10 weeks.

Disastrous is possibly a little over-dramatic, but it was frightening, overwhelming and all-consuming. The last two posts have pretty much documented what I was going through and how it made me feel, so no need to labour that point. Needless to say though, the last few months have not been the high point of my life and not knowing what was wrong with me, was probably the hardest part.

Last week my diagnosis was finally confirmed as Multiple Sclerosis. Yesterday, it was confirmed that I have Relapsing Remitting Multiple Sclerosis (RRMS).

I was told when this is all kicked off that it was most likely MS, but there were complicating factors with the way my eyesight deteriorated and that led to the belief that there was a strong chance that it could also be Neuromyelitis Optica (NMO). The reason it has taken so long to confirm the MS diagnosis is that NMO is a rare condition, there is relatively little known about it and the test for it is incredibly specialised and takes a long time to get a result. It’s been an incredibly tough couple of months not being able to start making plans or decisions because I simply didn’t know what I was dealing with.

I’ve gone from having no idea what was going on, to having an almost overwhelming amount of information! My control freak nature is happy with that…. :o) Odd as it may sound, I’m now getting to have a say in the management of my new condition and that makes me feel like I’ve regained an element of control over my life. Afterall, it is my life.

There are two ways to look at this. I can either withdraw and decide my life is over, or I can use it as a motivator to change my lifestyle, general outlook on life and use the MS and epilepsy as much as they use me. There is no cure for MS, there are only ways to try to manage the symptoms and lessen the chances of relapses in RRMS. For every person living with MS, there is a slightly different presentation of the condition. So, I’m focussing on me and what it means for me and what I can do to help me. Right now, the only things I can personally influence is how I let this make me feel and how healthy and strong I can make my body.

Among the handful of people outside my family who have known the story from the beginning of the journey has been EFS and Daniel in particular. He is completely committed to helping me get strong and healthy. I have a motivation that is so far beyond how I look but is all about how I feel in myself and how being healthy allows me to deal with life in a more positive way. Working out and becoming healthy will help with my stress levels and lowering my stress levels will hopefully lessen the chances of a relapse. Of course, nothing is certain. But being strong, fit and healthy can’t make anything worse.

So, I choose to use my new neurological issue as a kick in the ass to make changes in my life. I have decisions to make about the management of MS in conjunction with the management of my epilepsy. I also have an opportunity to rethink other aspects of my life and belief systems too. I can’t, in all honesty, say there will never be dark days again, there will. But I want to be in the best place I can be in order to come through them.

So there we have it. I have two neurological conditions to live with (I hope they can be friends with each other, keep each other company and then maybe they won’t feel the need to bother me!) and I have another chance at a fresh start.

I’m going to have to change my blog title again……

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Epilepsy and Life…

I was 15 when I had my first fit. My teenage years were spent being good. I did a lot of sports, I was academically fairly bright, I had friends but was never Miss Popular. One girl went so far as to say I was too ugly to like! Teenagers eh?! I was on a school ski trip to the Alps when I fell, in a fairly spectacular fashion, in to the life that I now live. I didn’t know it then, but that fall was to change my life in ways that I could never have anticipated.

My brother worked as a paperboy in a newsagent when we were teens. The day I had my first fit was the first time I did my paper round. That was the day of many firsts. Like the rest of my teen-days to that point, nothing about that day was spectacular. Nothing was going to prepare me for what I was going to have to deal with. I don’t recall feeling any different that day to any other. I liked English classes, I was good at it and I enjoyed it. That particular English class, I don’t remember. I only know what others told me. Sometimes it’s hard to separate true memories from the images I conjure following the descriptions of others. I will never know how much of what others tell me about my episodes is true. I will never know how much has been played down or omitted. That English class was where I had my first seizure. Wooden desks and chairs are not forgiving. Neither are teenagers! Bruised physically by the school furniture; scarred emotionally by pupils not in that classroom.

Life. How many of us know at 15 what the next 30 years will bring. I didn’t. I’m 44 now and I look back and wonder how many of my teen dreams became reality and how many of them I actually just can’t remember. When I was really little, I wanted to be a farmers wife. I could think of nothing better than being surrounded by animals all day every day. Then I found out that animals die. That there was the end of that dream! I can also remember that for a short time after that I wanted to be a “spaceman”. I have no recollection of why that was but I know it didn’t really last long. Probably a good thing! I wanted adventure, I wanted motherhood and I wanted love. Fairly standard I guess. I’ve never been motivated by money or materiality. Yes, I like nice things – who doesn’t – but “things” can’t truly replace feelings or memories. Most of the things I own, serve as reminders of the places I’ve been, the people I’ve met and the adventures I’ve had. Some would say I shouldn’t need these physical reminders. I would remind them that my memory is flawed. Its capacity diminished by a combination of factors. Maybe I’ll get to them later.

Life is a series of choices. A set of decisions. Even making no decision is a choice. Having epilepsy is not a choice, it’s a constant. Unlike my hair colour, I can’t choose to change it. Because it’s a constant, it becomes a factor in my decision making process. I’ll freely admit that not all the choices I’ve made have been great. Some have been positively atrocious. Too often, my heart has been ruled by my head and more often my head has been hostage to the misery of fear. Fear of what. Well that part I never truly bothered to find out, although I can hazard a few guesses. 

Epilepsy, though, is not something I’m scared of. At least not the physical aspect of it. So while I know that epilepsy will always be a factor in my life, I also know that it doesn’t wholly drive my decisions. In fact, some of the best decisions I’ve made have been to spite epilepsy. 

The parts of my life I’m most proud of, is when I’ve swallowed down the fear and I’ve used epilepsy as the reason to do something that most believe I shouldn’t. Often I’m proving more to myself than I am to others, but it feels good to know I’ve done things that some think I should not have. Along the rivers of doubt that course through my veins, there are jetties leading to solid ground. Too often I’ve passed by these potential groundings through fear. Too scared of what I might find. Instead of growing confident with age, I’ve grown more fearful. I’ve spent so many years afraid what others may think. My parents, my partners, my friends. Strangers. Too many years with no real knowledge of why. 

My point is, yes there is a point to this waffle…my point is, epilepsy has not been the dominating factor in my life. Having epilepsy has not prevented me loving and being loved, travelling, owning a home, having a career or leaping out of a plane at 12,000 feet. Being prescribed some medications have damaged parts of me; that’s true. Epilepsy has caused me some physical damage; that’s true. Epilepsy has contributed to my depressions; that’s no secret. But epilepsy has not prevented me from living. Epilepsy doesn’t have to have that control over me. It’s my attitude toward having epilepsy that dictates whether I’m battered by the current, clinging onto a raft or climbing out on the jetty. 

My fears existed long before I went skiing. My doubts were born years before I was diagnosed. The foundations of the walls I build around myself were laid early, probably way earlier than they should have been. There are weaknesses in the walls though. When I find them, or more often when others find them, they allow me to see and live a life without fear. Just as my epilepsy is, it seems, completely unpredictable, so are my decision making abilities. When my head is ruled by fear, my emotions stray out of control and are there, on my sleeve, to be witnessed by all. Usually, not always but with a scarily predictable frequency, my out-of-control emotions surface at the most inappropriate times. When that happens, I hate myself with such ferocity I scare myself. I hate myself a lot. I don’t hate epilepsy. Epilepsy is part of me; it is not me. My life does not equal epilepsy and epilepsy does not completely decide who I am; what I do; why I do it; when I do it; or how I choose to live.