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Still Standing…although…

…my knees are a bit wobbly!

In grand terms, I’m still trying to get my head around having Epilepsy and MS.

It took me quite a while to accept epilepsy into my life (and into the lives of those around me), I know it will be the same for MS. Yet, it somehow feels like I have a bit more to lose now.

Frankly, today, yep I’m on a bit of a downer. The whole situation seems very overwhelming for me and I know it also is for my family. Although this is my blog and these are my thoughts and feelings, I am extremely aware that it’s not just me this affects. I have the luxury of being able to get my thoughts out in writing, as I know me better than most and I know I would struggle to successfully say what I am able to write. I don’t know why that is. Although, I suspect it’s because this is my chance to free-wheel, as it were!! I get to write without having to clarify, justify or question what I’m feeling.

Don’t get me wrong. I want people to ask me questions. They often ask about things I haven’t thought of for myself and they often help me see with fresh eyes. Sometimes though, the questions I don’t have answers for scare the living bejesus out of me. It often feels like it’s all “me, me, me,” and do you know what, sometimes it is!! That said though, I know there is no way at all I’d be standing on wobbly knees if it weren’t for the people around me. My family aside, my friends and loved ones are what makes this situation bearable. The ones who call me out on my crap (Sarah – I’m thinking about you especially here :0) ) because they care. The ones who are brutally honest with me and can deliver that honesty with just the right amount of tenderness, keep me strong. The ones who just allow me to be me whether I’m wallowing or moving mountains, without saying a word. The ones who go out for lunch or dinner with me, knowing there is a good chance I’m going to talk/moan about my situation. The ones who sit next to me while we watch tv. The ones who push me on in the gym. The ones who make me laugh when I think I will never laugh again. The ones who let me cry and then ask if I’m “done now, because I’m missing the rugby”. All of them, serve to remind me that I’m not alone and I can do “this”.

So wobbly knees to hell with you!! Hmm – except after a million squats, then you can be as shaky as you want!! I’m changing my life to adapt to that which I need to adapt to. Some of you may not recognise me when I’m done, but that’s ok. Some may choose not to stand with me anymore, but that’s their choice. Others may decide to walk with me, though they’ve never travelled my path, that would be brilliant and I thank them. 

I choose to accept there will always be birdshits on the path of life. I choose to remember that if I stick my head in the sand, I leave my ass exposed. I choose to recognise that if I don’t make decisions about my life, then someone else will do it for me. 

I choose me.

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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 ???????

This is going to be a hard one to write I think. Although, the good thing is that, unlike with the last post, I’m actually not having to use voice recognition software. My sight has improved a little. What hasn’t changed, is that I have a second neurological disorder. In reality, I don’t know much more than I did when I last posted, but I need to write this down in order to get my feelings out and some of you have been with me on this journey from day one. If I can’t share it with you, then who….?

Epilepsy has been part of my life for nearly 30 years. I came to terms with having the disease (yes, I can call it a disease…Epilepsy and Words…), a long time ago. Of course, I still have bad days; days of “why me?”, but on the whole, I think I deal with it pretty well. The last couple of months, a new distraction has come my way. It turns out, final diagnosis pending, that I have a second neurological condition. Aren’t I the lucky one! Multiple MRIs, innumerable blood tests and antibody tests, medication galore, a stay in a hospital and the threat of a lumbar puncture later, I still don’t have a name for this new affliction. All I know for sure is that it’s degenerative, it’s cruel and it’s brutal. It tried to take my sight. It preyed on both my optic nerves and brought a degree of terror to my life that I haven’t felt for decades. My eyes aren’t the only recipients of this torture. Other parts of my nervous system have also been attacked. The severity of those attacks is still up for debate. Apparently, it’s “early days” and “too soon to be certain”. I’m still trying to get what’s left of my brain around that!

I’m still finding it all hard to take in. I can’t say I have fully come to terms with what’s going on. I think that’s mainly because I don’t really know what is going on! What I do know is this. I’m not the same person I was just 2 months ago. I can’t help but think I’ve been given a kind of challenge. My brain has thrown down a gauntlet; I have no real choice but to respond. How to reconcile the brain and the body? How to balance the head and the heart.? How to rise to the challenge, fight what is proving to be a bloody battle and not lose my essence? The past weeks have shown me some hard truths and tried to teach me some tough lessons. I say “tried to”, because I don’t think I have really come to terms with enough of this situation to truly be able to know what I’m being taught.

Epilepsy tried to teach me to be strong – but I’m not strong enough. Epilepsy tried to teach me resilience – but I’m not resilient enough. Epilepsy tried to teach my humility – but I’m not humble enough. Epilepsy tried to teach me to be brave – but I’m not brave enough. Epilepsy taught me so much, but it seems I have so much more to learn. I haven’t worked for 2 months, my sight isn’t good enough and another seizure floored me a month ago. Suffering a fit was no great surprise. A combination of stress and the, almost, total lack of sleep really made it a bit of a foregone conclusion! That being said, seizures always knock me for 6 and this one was no exception. I’d only got my chipped teeth fixed at the beginning of the year too!!

Anyway, as is always the case following a fit, reflection takes over at the top of my list of things to do. This time though, my mind was in overdrive anyway and I find that I haven’t been able to fully process the seizure and piece together the events that lead up to it. I’ve blogged before about how I need to be able to put together the timeline in order to start the process of acceptance that I need for me. So, while I know what the trigger for the fit was, I’ve lost time and I don’t know how to fill those hours. Maybe I’ll get to that later…

My jigsaw is featuring heavily in my thoughts at present. The corner pieces are still valid, 45 years worth of the big picture are in place, but what is next? Someone I trust said that you don’t have to have all the jigsaw pieces gathered to know how the picture is going to turn out. That’s very true. So, what do you do when you can see the pattern and don’t like what is forming? Well, you just pick new pieces and use those, right?!

Easy! Job done! haha – if only!! Picking up new pieces means forming new patterns and changing, what may well be, deep-rooted behaviours. For some folks, I dare say those changes may be easy, for others it may require them to embark on the toughest of journeys. It is true that some changes are easier to make than others and it’s also true that what is easy for one is another’s worst nightmare. That’s what makes us individuals. That’s what has been going through my mind. I look at the pieces already laid and I see patterns, I see a lot of habits that aren’t helpful to anyone least of all me. I don’t have all the bits, but I can predict what will happen if I don’t choose a new colour scheme for my brain!! So, it’s time to redecorate. Re-evaluate what is important and what is just window dressing and learn to adapt.

I’m removing toxic people from my life. If they don’t notice, then it proves they have no real place in my life anyway. I’m trying to care less about things of no real consequence; I’m trying to figure out what those are! I’m persuading myself to be open to opportunities and to stop letting fear (or laziness!) from making my life little.

None of us knows what will happen tomorrow, or indeed in the next hour. We can plan what we want to do and map out our days and hours by the minute if we want to, but we simply have no way of knowing what life is going to throw at us at any particular point. There is a saying I can’t quite remember how it goes but it’s along the lines of – “there is nothing more certain than death and nothing more uncertain than the hour”. In broader terms, death truly is the only real certainty in life, but when it will happen is anyone’s guess. So, this leaves the terms of life wide open really and it’s up to the individual how they choose to live it. Life throws spanners at us all the time. Some miss and some get stuck in the wheels, it is up to us to decide what we do about them.

I have achieved much in my 45 years. I’ve seen and experienced extraordinary delights, cultures, people and places. Adrenalin has coursed through my body and driven me to experience some of my wildest dreams. I want to stop saying that in the past tense. Epilepsy taught me so much; this new test will teach me so much more.