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Is your battle my battle?

I agree. Fatigue is a big part of this post. I’m tired. I’m emotional not hormonal. I’m grateful for what I have, but feel short-changed. I feel guilty for feeling that way.

I read about a lady battling to get her husband the support he needs to live with his mental health problems. He’s homeless because he can’t be around his kids, he is being over-looked by an over-whelmed healthcare system. His kids know he’s homeless but don’t understand why he isn’t being helped. He doesn’t tick the right boxes so he isn’t a priority. He is deteriorating on a daily basis, his wife is desperate to help him but is being blocked at every turn. Yet, she keeps fighting. She fights every day.

People like her give me hope for a future that I struggle to see. She’s doing it for her kids. She’s doing it for her husband. The side effect of that, is that she is doing it for me and for you too. What society as a whole, I think, tends to forget, is that we are are ALL a single, unexpected event away from the situation this lady finds herself in. She didn’t marry a man with obvious mental health issues. She didn’t have children with a man with obvious mental health issues. Yet a single circumstance sees her on a 9-year battle to get help for him. I feel humbled by her battle and in awe of her strength.

And yet.

I, like so many of us, can’t comprehend her situation. Can’t see past our own circumstances. Is this wrong? On so many levels it feels like it is. I feel guilty because I can’t give the wider issue that she raises the due attention it deserves because I’m wrapped up in my own. Aren’t we all? On another level, I feel grateful. I feel such a sense of relief that I don’t have to live everyday raising small humans to be decent citizens while trying to explain to them how society, as a whole dare I say, is letting their father down. Is it enough to think “that’s terrible, I wish there was something I could do” and move on to the next story? Well we all know the answer to that. At least I hope we do. Yet, it really isn’t that clear cut and simple, is it.

My issues, my mental health problems seem minor in comparison. I equally hate myself and commend myself for saying this. My situation is different. Completely different. Yet, the facts remain. I have epilepsy, I have MS, I have depression (& before the pedantic police pull me up, yes I know I’m supposed to say “suffer”), I have mental health issues and I struggle to see a way forward. I’m still functioning in society though and for this I feel grateful. Or am supposed to feel grateful.

I just don’t know that a society by which it’s ok to let a man and his family suffer for 9 years because the man doesn’t fit the right boxes to get him adequate help is the society I want to live in. It seems all I can do to try to change that is continue to help the lady raise awareness of her situation and to vote. Oh don’t get me wrong. A huge part, the vast majority indeed, of society are good people. People who are shocked and saddened when they hear of issues like this. That’s a good thing. Yet, I feel that we are gradually moving toward a time where this lady’s circumstances are the norm.

How very sad.

My own issues, when compared to this lady’s pale in comparison. But they are still valid. They are my day-to-day. And I suppose that’s what we all have to remember. It’s all relative. I can’t compare my situation to hers because it’s so very different. I can sympathise, but struggle to empathise. Perhaps because I really, simply just don’t want to imagine what it must be like to walk in her shoes.

I feel tired. I bet she does too. I feel emotional. I bet she does too. I’m battling my own demons, I bet she is too. I am utterly fatigued. I wonder if she is too. Her kids are suffering more than a child should. I don’t have to deal with that. Her husband is suffering more than a husband should. I don’t have to deal with that. She is battling hard to raise awareness. I wonder if I do enough of that. She is battling every day. I wonder if I have the strength to do that. Her pleas for assistance from the relative bodies are, effectively, being ignored. I struggle to raise to the relevant bodies my pleas.

The differences are pronounced, but the similarities can be found.

The moral of the story, in my eyes at least, are epically biblical. “There, but for the grace of “xxx”, go I”.

Another disjointed outpouring from a fatigued and emotional mind.

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Ruminations with Rumi…

I feel like I’ve been fighting my whole life. There is a war that rages between my physical deterioration and my mental or emotional strength. The weapons used are cruel, there is little respite and the stakes are fricken enormous.

Rumi referred to emotions – all kinds of emotion – as “unexpected visitors”. Rumi thought we should let these callers in and let them visit with us for a while. Give them a cup of tea and get to know them type thing. This concept from the 13th century passed the stiff upper lipped British by. Why do we feel the need to be restrained and remain resolutely defiant when an emotion comes calling?

Rumi writes beautifully. Well, the way he has been translated from Persian to English is beautifully done anyway. I’ve only relatively recently been introduced to his writings and they resonate with me pretty deeply. I read all sorts for all sorts of reasons.

I read because I desire to understand. I read because I want to learn. I read because I need to get lost in a world that isn’t mine. I read because I long to escape. I read because I must. I read because I can. For now, reading is an ability that has escaped the tortures of my mind and body. Reading takes it all away. It’s my shelter and my comfort. It reaches into my soul and makes it laugh, makes it think, makes it feel invincible and makes it forget. Reading nourishes me. Language fascinates me. Evolving language, at once, gives me joy and makes me long for the days when Mr. Marshall taught me that “focussed” has a double s!

When I hear someone describing reading as boring, I can only think it’s because they haven’t found the right book yet. Going back to Mr. Marshall for a minute (he was one of my English teachers at school), he always said there was no such thing as a boring activity only boring people. I’ve turned that over in my mind a lot over the years between him first saying it (he said it a lot) when I was 14 and now when I’m 46. I came to the conclusion a few years ago, that what he was trying to say is that everyone is different and will feel differently about every activity, be it reading, playing football, singing…whatever. That means the activity in itself cannot be described as boring. Boring people, however, are those that choose not to engage in any activity at all. That’s what I think he meant. He’s dead now though, so I can’t ask him. I wish I had at the time. But, well, if wishes were horses, beggars would ride.

Anyway, I’ve digressed. I do that a lot. So, why do we find it so difficult to sit with our own emotions and acknowledge that we have them? Are we conditioned to believe that we should only feel positive emotions? Are we only allowed to feel happy, excited, thrilled, delighted, amused, loved, loving? Why do we feel its ok to acknowledge that we feel angry about something but not that we feel hurt by it? Why do we feel it is a weakness to be able to show vulnerability, but at the same time not be shocked when we get hurt? Why do we see it as inevitable that if we display an emotion that is not perceived as socially acceptable that we will somehow be thought of as a lesser person? Who decides what is socially acceptable??

My experience of showing emotion has not always been positive. I didn’t show my true feelings for years after I was told that my tears were pathetic and weren’t going to be put up with. I was 15. In order to swallow down the emotions I felt (& god knows at 15 I felt them ALL), I built some bloody fantastic walls. My grandad, a builder, would have been mighty proud of my structures. The wolves were not going to huff and puff and blow my house down! My house. There was no door. There didn’t need to be. I wasn’t coming out and you weren’t getting in. Simple. I was described as having ice water running through my veins. Apparently, it was discussed at length by people other than me, that I felt nothing. I felt baffled by this. If I showed that I was upset or hurt or confused or in pain then that was wrong, but if I showed nothing at all then that’s wrong too?

As a consequence of this inner conflict, when my emotions burst out of me as they are want to do, they were generally inappropriate. I couldn’t control them. I tried to channel them in the various sports I engaged in, although I didn’t know at the time that’s what I was doing. I was young, I was scared and I felt alone. So, I stuck everything in my solid house, climbed out the one window and tried to live a life that wasn’t full of anger and frustration. And I did.

I’ve had many, many wonderful adventures in my life. I’ve seen a lot of things others can only dream about. I’ve done a lot of things that others can only wonder about. My memory bank is full to brimming with wonderous colours, sights, sounds, people, noises, feelings, music and laughter. The flora and fauna of many a country are stored away to be brought out in writings or in musings or just to give a little colour to my day. All of this is juxtaposed with my house.

It’s only been in the last 10 years or so, that the window to my house has been cracked open. There is still no door. So if you want in, you have to really WANT it. One of Rumi’s most famous quotes is “the wound is the place where the Light enters you”. I liken that to the cracking open of that window and allowing someone other than me have a bit of a wander around. It surprises me to this day how hard I find it to let people into my life. This blog helps me immensely in my journey toward sorting through my house and throwing out old rubbish. I know now and acknowledge that I’ve been suffering from depression for most of my adult life. Acknowledging that was probably the hardest thing I’ve ever done, but liberating at the same time. For a few years, it was only me and my GP who knew. (When I think about this, it isn’t so. I suspect a lot of people knew that I was suffering, but god forbid they suggested it to me.) When I decided to go public, it was done so casually that when I think about it now it makes me giggle. I would just drop it into conversations. As an adult, I’m better at knowing when it is and is not appropriate to do certain things. So while I would throw out this comment about “my depression” it was always in the right place in the conversation. It had to be.

So, my mental state is on one side and the deterioration of my physical packaging is on the other. The MS diagnosis is still fresh and raw and I struggle every day to find positives in it. At the moment, most days, I don’t see any bright side at all. Well, other than the one that lets me say “it could be worse”. I was at the hospital a few days ago and tried to get answers to the muscle weakness, the internal inferno, the other changes that are happening to my body. There are none. No-one can tell me if the weakness is a relapse. They think it probably isn’t, but they can’t be certain. No-one can tell me if the weakness is the beginning of my MS getting worse. Right now, there is nothing to be done. There is nothing that can be done. Although I feel the time is right to start saving hard for whatever future is ahead and what kind of walking aid I may need. I contemplated building an extension to my metaphorical house. I decided not to. I can’t always articulate my feelings, but I no longer want to bury them. Mainly because I simply can’t be bothered anymore. Its hard work pretending to feel something that you don’t and it’s even more exhausting trying to deny a feeling that is pervading every cell in my body.

So, I know to expect my depression to be with me. I know that the medication I take for it allows me to deal with it, in the main. I know that the medication doesn’t make the depression go away, but it does give me a bit more of myself (if that makes sense) to be able to cope. I also know that, for me, I have to sit with it alone for a while so I can process it enough to share it. I’ve learned there are no hard and fast rules when it comes to dealing with depression. I know that what works for me, won’t work for everyone. I know that just because I’m willing to share my story, doesn’t mean that everyone wants to hear it. That’s ok. That’s actually how it should be. We aren’t all wired the same way. We aren’t all moved by the same things and we aren’t all disgusted by the same things.

Thank goodness!

So back to the words of Rumi…my body may seem meek, but my spirit does somersaults in the sky! At least it will when depression has finished it’s cup of tea and it’s visit is over.

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MS & Marionettes…

Today, I stepped off the bus and I didn’t know if my legs were going to support me. Tomorrow, I’m going back to the hospital.

As I write this, there is a red, angry rash covering my whole body. It’s caused by the medication I’m on and it happens twice a day. I know it’s the drugs and I know it will pass, but there is a tiny sliver of me that wonders if this will be the time when it doesn’t go away. The rash is accompanied by a burning sensation that radiates from my head downwards. It truly feels like I’m being incinerated from the inside out. The itchy feeling makes me want to claw at my skin. I just want it to stop. I try to see the funny side. I look like a tomato and feel like one that’s being grilled. I feel a bizarre empathy for griddled foods. But it isn’t funny and I’m not laughing. Quite the opposite.

I feel like a puppet and the marionettist hasn’t a clue what they’re doing. I walked from the bus stop to work and with every step, I felt a weakness in my legs. The only other time I really feel my muscles is after an intense burst of exercise. Then it’s generally pain. Today, finding words to describe it adequately is hard. My legs felt weak to the point it was almost funny. The sensation was that of overwhelming weakness but no pain at all. I’m fully aware that my gait is all over the place and I’m supremely conscious of every other person hurrying to get on with their day. I don’t hurry. I can’t hurry. I’m scared to hurry. The invisible puppeteer with his invisible wires is leading my legs on a merry little dance that has no rhythm and no grace.

I know where I want my legs to go. I see the path in front of me and I’m trying to walk in a straight line. I know I’m not. I’m lurching almost from side to side. An old ankle injury seems to be bearing the brunt of my weird walk and I can feel a yelp from the joint. Not an out and out scream, but more that it’s reminding me that it has a valid weakness and it can’t really cope with the extra weight that is being applied at a weird angle. I don’t know that I have ever been that completely conscious of any part of my body before. Other than my eyes. A year ago.

My eyes have been feeling a bit off kilter too. They seem to leak a lot more fluid these days than ever before. I think it’s what people generally call tears. I feel fairly certain that I’m losing more than my fair share of them and I wonder if tears form part of the myelin sheath that’s meant to be surrounding my nerves, but is, in actual fact, leaking out of my tear ducts at a sometimes alarming rate. I’ve always worn my heart on my sleeve, but I was never a great crier. Until recently. Well, I say recently, but I mean in the last year or so. Don’t get me wrong, I’ve never been adverse to the odd crying session. Thankfully I’m not a wailer when it comes to the expression of tearful emotions, rather they escape silently, steadily flowing down my cheeks. I want to go back to the days when I wore my emotions on my face, but they weren’t accompanied by these hot little tears that are born of frustration, anger and fear. The problem with my eyes isn’t the tears though. I feel a pressure behind my left eye that makes it seem like it will explode at any given second. The fear that this is the beginning of a repeat of those terrifying weeks a year ago is bubbling through me. I wonder (or maybe hope) that it could just be a sinus issue and that’s what I’m feeling. Nothing to do with MS, but instead, a fairly common affliction that the vast majority of us have felt at one time or another.

I also have a, sometimes overwhelming, feeling of sadness. I’m still working that one out.

The feelings of muscle weakness that I have so inadequately described are accompanied by a terror that I try to pretend isn’t there. What if. I’m scared I’m on the verge of a relapse. I’m terrified because I don’t know how that feels and so can’t be certain. I don’t know if the weakness is just because I’m so very tired. All the time. Tired. I don’t know if I’m so focussed on every little thing my body goes through, that I am making a mountain out of a molehill. If I’m being really honest, when I try to describe these feelings to people, the blank looks and the sometimes fleeting expressions of disbelief make me feel fraudulent.

I can’t describe it. Others can’t understand it.

I used to understand my body. Epilepsy is an almighty pain in the ass, but I knew what to expect. I knew how I would feel. I didn’t always see it coming, but compared to how I feel every day now, I’m glad of that. It would hit me like a ton of bricks, leave me battered, bruised and depressed and then bugger off until it stored up enough energy to electrocute my brain again. Of course, I’m describing that in the past tense, but it is ever-present. Always in the background. Always watchful for the next chance to become the puppeteer.

Through the whole “woe is me” and the tears, I try to find the positives. My legs did support me today. I felt like a newborn-Bambi on ice, but I did make the short trip from the bus stop to the office. And I also successfully completed the return journey. Some would say I was worried over nothing, Unfortunately, that couldn’t be said until after I’d achieved the short walk to the office and the subsequent activities of the day. It went through my mind every time I sat down, that the last time I have stood up under my own steam, may have passed. Then I remember that I’m a drama queen and get over myself. But it is stored away in the cupboard that houses the electrical circuits.

At age 45, I knew me. At age 46, I’m a stranger to myself. What is it they say about strangers? They’re just friends we don’t know yet. It would seem that this stranger is going to become a friend I will have a love/hate relationship with!

Perhaps though, that will give me more cheerful things to write about!!

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Short, but not sweet…

I’ve been monitoring my thoughts. Isn’t that what we’re all supposed to do these days? I’ve noticed several things. Multiple Sclerosis is there in my head every minute of every day. I brush against a wall and it’s because of the MS and if this is happening now when I’m 46, how bad will it be in 5 years, 10 years? There is a small, concurrent thought that maybe I’m just clumsy. Maybe my clumsiness is not MS and is just that. Clumsiness. That thought isn’t carrying the same weight as the other. I think about the future all the time. I used to be obsessed with the past, now it’s what will happen. On some level, I know that I can’t predict the future. On another level, I know I have MS. I know I can’t predict the course of the MS in the same way that I can’t see the future, and sometimes I think that if I don’t think about the MS then I won’t have to think about the future and I can go back to the relative safety of raking over all the mistakes in life I’ve made and all the triumphs and phenomenal things I’ve seen and done. That then makes me think that I would be denying the MS and therefore not preparing myself for the future. But I don’t know the future so I can’t prepare anyway, can I? This is going on in my head every day. Every single day. I can’t remember the last time I didn’t think about MS.

At the same time that this is all going around in my head, I’m trying to function in the other parts of my life. I’m trying to deal with work, with decorators, with finances, with relationships, with my wayward, single ginger eyebrow hair. Nothing else has stopped because I have MS, but the amount of room in my head to deal with it has shrunk. Sometimes, I try to be mindful. Allow the thoughts to come and then just go without actually thinking about them, only acknowledging them. I try. I generally fail. Sometimes, when I try to be mindful, other thoughts creep into my head. Dark thoughts, truly dark thoughts. I don’t want them there. When I’m tearing myself up about the MS, those dark thoughts don’t seem to have the ability to get in, its when I stop thinking that they pervade. Weird eh.

I’m in the final stages of the flat being sorted out. Dry rot banished, new kitchen installed and the decorators have been here for 8 days and have about another 3 days to go. I’m scared that when it finishes, I’ll have more time to dwell. Dwell on the MS. Dwell on the fear, ponder a future I can’t see in a state that I can’t be sure of. The alternative is that the dark thoughts will find their grip. I’m finding it increasingly hard to know that it might not all be doom and gloom in the future. For a while, I was able to remain fairly positive that ok, I have Multiple Sclerosis and I have Epilepsy but it could be worse. I still say that out loud because it makes everything less scary for others. The truth is that I am utterly terrified. It’s been about 11 months since the whole round of doctors, hospitals, scans and drugs kicked off and it has been about 16 months since the numbness down one side of my body appeared. It doesn’t feel that long. It’s all still so very raw. I sometimes think that I’ve processed it all and bits of it are tucked away in little parts all over my mind. It’s not. It’s there, right there. Front and centre. The focus. Everything else in my life is playing second fiddle and I can’t dedicate the headspace required to deal with those aspects. I feel like I’m no longer in control of my own life.

I function in a heightened state of total stress. All the incredibly positive changes I made to my lifestyle have fallen away and I’m not taking care of me anymore. I can’t be sure, but I wonder if it’s because I don’t see the point. Have I given up on some level? I don’t know the true answer to that. I think about it a lot, but I don’t know the answer. I told myself that I was making all the changes because it would make me strong enough to fight this bloody disease. At the time, I was able to make myself believe that while I might not win the war, I was bloody well going to be victorious in at least some of the battles. That fight in me seems to have disappeared. My candle has blown out.

Yet, I’m writing about it all. Is this acknowledgement going to be enough to find the spark again and ignite it? Or is the darkness that has pervaded my existence for most of my adult life going to gain its foothold like never before? I can’t deny that I have let a lot of things slide. I don’t know that its because I don’t care anymore, I think its just more along the lines of there seems to be very little point. Am I just depressed? Sure as shit I’m depressed. Am I wallowing? Good question. Yes, probably, a little. But isn’t wallowing in mud supposed to be good for cooling the blood? The metaphorical mud here, being the thoughts. I think that’s probably pushing it. In my situation, the mud is far from glorious and I think wallowing in the hollow for too long when you’re not a hippo might end up being regrettable.

So, I’m tired, I’m depressed, I ache everywhere, the bunion appearing on my left foot is bloody sore and all in all, right now, I will admit to being pretty low.

Ah well. Shit happens right?!

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Rotten luck…

So, just to add to my sad little tale of woe, it appears I now have dry rot. Well, not me personally, but my flat. Although, it seems like quite a good analogy for my brain!!

According to Wikipedia (all hail google and Wikipedia), dry rot is “wood decay caused by certain species of fungi that digest parts of the wood which give the wood strength…”. Yes, this is very much sounding like the MS & epilepsy that ravages my brain and body on a constant basis…And the treatment? Removal of the offending, affected wood and chemically treating the surrounding areas. Sounds a bit savage, but that is the “cure” for certain types of epilepsy and both afflictions are “controlled” chemically. Oh and no, it’s not covered in a standard buildings and contents insurance policy.

The whole dry rot condition is brutal, devastating and requires treatment. Expensive treatment. Epilepsy and MS are much the same. If you’re lucky though, the treatment is free.

Dry rot tends to be an invisible condition. Usually, you don’t know you have it until you want to redecorate or renovate some part of your house (or, as in my case, your neighbours do). As with epilepsy and ms, it’s usually something significant that triggers the eventual diagnosis of the disease. You can’t always guarantee a person’s health based on their physical appearance. These are just 2 so-called invisible illnesses, there are so many. In my immediate family, there is epilepsy, ms, depression, congenital heart defects, Sjogren’s Syndrome, arthritis and dementia. Everyone knows someone who suffers from an invisible illness, although they may not know it. Diabetes, lupus, lime disease are just a few others, but it’s mental health issues that spring to most people’s mind when the term is used.

The last few weeks have been hard. (I seem to say that a lot at the moment!). The dry rot situation left me teetering on the brink of I don’t know what last week. I was meant to meet the builders but instead, I begged my brother. We were going to go together. My brother arrived at my house and I lost it completely. I had a meltdown of epic proportions. Floods of tears, hyperventilating, snot, inability to talk coherently and a steady unwavering conviction that I couldn’t take any more. My brother hugged me for the first time in 46 years (we’re not good at emotions in my family) and he went to the meeting alone and declared he would deal with everything, the builders will deal with him and all I have to do is move out when I get told to, oh and pay for it.

My brother seeing me in the state I was in was a helluva shock for him I think. We’re not good at emotions and we’re all guarded with each other in my family. I find frustration and anger easier to show than fear. It was that fear that my brother got the full brunt of last week. I don’t think for a single second he thought his sister would be crying on his suit jacket that day. This same brother who won’t sit on my sofa in case he gets a cat hair on him, was dealing with me dripping tears and snot instead. Kudos to him. He stepped up and was there when I truly needed him.

There is a point to this rambling about tears, snot and diseases you can’t see. We don’t always know what a person is going through. We don’t know what battles they face on a daily, hourly or minutely basis. We don’t always know what drives certain responses that are sometimes inappropriate. We don’t always show how we are truly feeling to those that really need to know. There is a myriad of reasons for this.

We are often quick to jump to conclusions and even quicker to judge. My house shows no outward signs of being ravaged by rot, but it is. I show no outward signs of being at the mercy of one disease that could kill me at any moment and another that could leave me in a wheelchair, but I am. My dad said to me many many years ago that I had ice water running through my veins. My brother saw last week that I don’t.

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Rambling weebles

The past 6 months or so have probably been the worst of my life. Worse than the passing of a loved one? In some ways, yes, I felt like I lost my body, my brain and my self. Worse than breaking up with a partner? Yes. I felt like I was splitting from my health.

Recriminations were rife, even though I tried not to indulge. Looking for something to blame was common. “It’s not you, it’s me!” my brain was screaming at my body. There have been tears. Oh so many tears. There has been much rage and anger. There have been threats of giving up – what’s the point? There has been a darkness that I didn’t know was possible and some realisations that may well have come too late in my life. There has been a lot of soul-searching. A LOT of soul searching.

Epilepsy has caused me much anguish over the years and a lot of pain both physical and emotional. I feel like I should have been better prepared, in some ways, because I’ve already been dealing with a neurological disease for 30 years, so adding in another one, while not ideal, shouldn’t be that hard. Right? Wrong. Epilepsy knocks me on my ass and then I get up, go through the depression and get on with life. I’ve made my peace with the limitations it placed on my life. I don’t like them, but not being able to drive, not being able to deep sea dive etc, while not what I would have chosen for myself, have not proved to be the end of the world. It took me a long time to get to that place of peace and it’s not always been a stable place!! In some ways, because I’ve grown up with it, epilepsy didn’t/doesn’t hold the same level of fear that MS has introduced. As my life evolved so did my coping mechanisms. I haven’t always got it right, but the humour that I can sometimes find in the situations seizures have put me in, made things easier for those around me and that in turn made it easier for me. Sometimes, the laughter is hard to fake.

MS has caught me out. As you get older, you kinda expect certain things. The way everything goes south, the wrinkles that appear, the memory that’s not quite as sharp as it was, the tendency to utter the phrase “when I was your age…” and the knowledge that some debilitating conditions could appear in the future, But that future was my 70s or 80s, not my mid-40s. The discovery that MS may have been with me for a bit longer than the diagnosis is a shocker and the knowing that it could, and probably will, get worse is hard to stomach. My choices are stark. But they are choices and they are mine to make.

The way I see it, I have reached a three-pronged fork in the road and the time for dithering is passed.

I can go right. Right takes me to a field where I sit down, give up and wither with the coming of autumn and then die in the snows of winter. The bench I’d be sitting on is hard, the view is bleak and I forgot my scarf.

I can go straight ahead. I can take the drugs, heed the medical profession, not rock any boats and wait for the inevitable to catch up with me. This route would lead, eventually, to the same field that’s at the end of the right-hand path.

The third option is left. Left will mean taking control of that which I have power over. Left means that summer is longer, autumn is radiant and winter is crisp but faced with a scarf. Left means taking advantage of what is on offer to me in terms of treatment and supplementing it with what else I choose to put inside my body and hence my brain. Left means making my body and mind stronger. Even stronger than they had to be through the trials of not just epilepsy, but life in general.

That is the clincher. Life wouldn’t stop just because I’d decided to. Life goes on. Life finds a way. Sometimes its a crappy way, but it is a way. Why should I not try to take part in that? Would it really be easier to just give up? I know there will be days to come, when giving up is all I want to do. I’ve already tasted that. I’ve already come through some of that darkness. I know there are days coming up when I might actually not physically be able to get up. The numbness might give way to weakness in my limbs. My brother has a saying, that if you put your head in the sand, then you leave your ass exposed. How true. I’m aware of what my future could hold for me. I’m aware that there could be immense difficulties ahead. That lucidity means I damn well know that there could also be some bloody awesome times ahead. I’m ONLY in my mid-40s. My life isn’t over because of 2 letters! My life can still be what I make of it. My life WILL still be what I make of it.

This is where the vast amount of soul searching that has been done and is still to be done, comes in. You have to figure out what is important. I’ve had to work out what is important to me. What am I prepared to put up with and what am I not prepared to have in my life. That isn’t easy. That hasn’t been easy. It won’t be easier in the future. Yet, I have a backdrop to weigh it against. MS, Epilepsy and maybe Ocular Sarcoidosis. Thats my back drop. Thats my canvas. In the grand scheme of my life what is worth it and what isn’t. Is putting up with a nasty, vindictive person in my life a good way to spend my time? Yes, it makes it easier for other people to play nice, but what does it give to me? This is one of many questions I’ve asked myself. I don’t have all my answers. I don’t think I will ever have all the answers. But, again, that is part of my tapestry. That’s my jigsaw. My attitude towards the pieces that are laid out before me is changing. I’m ok with that.

There seems to be a helluva lot of bird crap on my path of life just now. Regardless of which road I choose to travel. I suspect there will be more to come. I try to remember that people pay money to spread crap on crops to make them grow bigger, stronger and healthier. The crap on my path is free, albeit I don’t want it sticking to my shoe.

Just as weebles wobble but they don’t fall over, well hell, I’m still standing!

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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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Dear brain…

Dear brain,

For 30 years now, you, my body and my soul have been fighting. My body and soul are exhausted from the constant feuding, the intermittent bloody battles and the never-ending war. You have waited, until this time, to play your trump card. You held the hand that no-one saw coming. You were nurturing another neurological affliction alongside, perhaps marginally overlapping, my epilepsy. Well played.

The past 3 weeks have been the most frightening of my life. You still refuse to give up your secrets though and confirm what, exactly, you have in store for me next. My sight is failing – will it return? The nerves I so desperately rely on are scarred and battle weary – will they ever heal? You know the answers, dear brain, please reveal them.

I’m tired, I’m scared and I don’t know how to deal with this. The irony is not lost on my soul. You, brain, control this. You, in all your wonder and secrets, hold the key to everything that I know as “life”. What did I do to wrong you so? Are the 23 tablets I took this morning to help you, along with the 3 more I have to take tonight, not enough for you to know I want you to heal? My soul needs you to heal, my body can’t live without you.

I’m on my knees and begging you now. I’ve tried hard to be strong these past decades. I know that I haven’t always been able to meet your expectations and I know that I have often shrouded you in a dark depression. I haven’t had the courage to ask for help when I needed it most and I know that must have caused you pain. Please don’t punish me.

I resolve, here and now, to be better. I want you to heal, I need you to be well and I will do whatever it takes to make that happen. Please don’t take my sight. There are so many wonders in this world that I’ve been too afraid to explore. I want the chance to see them.

I don’t want to have to use this voice recognition software, I don’t want to be afraid. I know that my sight can be restored, maybe not to as good as it was, but enough to do the things that still need to be done. I want you back brain. Remember how it used to be for us? It can be like that again, just tell me how. Show the doctors what you need. Please.

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Jigsaws and how do you know its the right part?

I’m full of how? How do you know if something is right? How do you know if the piece fits? How do you make a choice, and not just any old choice, but the right choice? The best choice? The good choice? So, the box I’m thrusting my hand into in order to choose the new parts for my life; how do I know its the right part?

Trust your gut? Trust that hidden, internal feeling? That instinct? How can you trust your gut when the only good decision it’s made recently is whether or not chocolate counts as dinner; and even that was a bit of a questionable one. Apparently chocolate isn’t a sensible, nutritious, filling dinner option. Who knew?? My gut thought it was. My gut enjoyed it actually. Is enjoyment enough to make it a good choice, though?

Joking aside, I’ve heard most of my adult life, that the way forward is to trust your gut. Listen to that small, internal voice that gives you a direction. In hindsight, I’ve often wished I’d listened to my quiet little communicator, the one that’s tucked away in a part of me that isn’t yet tainted by that thing we call life. Sometimes, it’s hard to hear, though, don’t you think? There is so much white noise in this life, that it’s not always immediately easy to close that off and tune into instinct. Or maybe we can actually always hear our own vibe, but don’t trust it. Rather we question it and find ways to negate the suggestions. Sometimes, we find it easier to listen to others and their opinions, rather than take full responsibility for our own desires. I think it makes it easier to accept when it doesn’t work. There is someone else to blame. “Well xyz told me to do it this way…, I thought it was a bad idea and it turns out I was right!”. We then relieve ourselves of the responsibility. It’s a bit of a cop-out, but we’ve all done it to a lesser or greater degree.

For me, all the how questions feed my procrastination habit. I know that I should have done things differently a long time ago, my gut told me that (through bellyful of chocolate)! Yet, I got bogged down with all the how?, what?, why? and when? that meant that instead of listening and acting; I sort of heard and found excuses not to. The only question I chose to answer faithfully, was the who?. It has to be me. I’ve palmed many parts of my jigsaw off onto others. I’ve given endless advice on what someone else should do with their particular issue, problem, windfall or situation. But I have not taken full advantage of my glorious insights into the workings of the world and pointed them at myself. Oh hell no. I’m quite happy to tell you how you should live your life but I’m sure as sh*t not going to apply all that common sense and wisdom to my own! Actually, that’s not strictly true. I don’t think I’ve ever told anyone how to live their life, although I have thought it on multiple occasions, but I’ve never shied away from giving my thoughts/opinions when asked for them.

So why is it easier to fix someone else’s issues, than it is to deal with your own? Well, that’s easy. You don’t have the responsibility of action and consequence. If you offer advice, the recipient has the choice to act upon it or not. At that point, you are absolved of guilt, erm, responsibility. “On your own head be it”. I’m self-aware enough to know that, on occasion, when I ask my friends “what would you do?”, I’m hoping they don’t come up with a totally tangible action that any argument against would make me seem more ridiculous than I am. If I get an awesome response, I like to pretend I didn’t hear it, in order to continue with my procrastination. And yes, I’m perfectly well aware that this is daft. So, my way around that little pebble on the path is to not ask for help. I stick to asking the really important questions that involve billions of dollars to fix (I don’t have that therefore I can’t fix it), billions of people to fix (ok, slight exaggeration, but you get my drift) or existential questions to which there is no right or wrong answer. See, no flies on me!

Yet, this cunning little plan of mine hasn’t got me far. This not asking for help malarkey has seen my drugged up to the eyeballs on anti-depressants, terrified of any questions (actually answers) that relate to “me” and stressed to high heaven and back. If I don’t ask the questions, I don’t have to hear the answers, so I don’t have to change anything and so my comfort zone isn’t breached. Yet, I will quite happily jump out of a plane at 12,000 feet or cage dive with apex predators in murky waters. I’m very proud of these achievements. My gut demanded I did them, demanded that I followed through and swore blind I would enjoy them. My gut was spot on. When I get to the jumping off point that marks the switch from conscious living to whatever comes next, those experiences will be on the 7-minute highlight reel, that apparently plays.

So, how do we choose those pieces and how do we know they are the right pieces. There is the don’t pick any new pieces and change nothing road to the left; then there is the don’t know, don’t care, just grab the first piece you can road to the right; or the tune into your own vibe, allow your own instincts to flourish and sing and go with them road that lies straight ahead. Easy right?

Of course it’s not!! When has anything worthwhile ever been easy?! I know you’ve heard that said a million times before (yes, as well as a procrastinator I also tend toward exaggeration). It boils down to allowing yourself to trust yourself. Why should the advice you would give to the one you love most in the world, be any different to the advice you would give yourself? Get your best friend, your parent, your lover, your partner, your lawyer(!), your pet (I talk to mine, I’m certain they give awesome advice) to turn your what if back on you. Answer the question as if it’s not your life and your responsibility but a desperate plea from a friend. See what answers that gives you.

While you turn that little nugget over in your mind, think about this. There is an infinite number of jigsaw pieces in the box. Don’t overthink it. Pick it up, turn it over and around quickly and tune in. You do know what’s right. If you aren’t ready to dive in head first, then hold on to the piece for a while until you are ready to make the changes. Just don’t hold on to it too long. If you do, you may crush it and what could have been perfect will become an “I wish I’d…”. Then guess what, you go back into the box and you pick another piece. At least you will know you’ve tried.

I had that conversation with a very dear friend just last night. It revolved around simply knowing that neither of us wants to get to that 7-minute playlist and find something missing because we didn’t have the courage to try it. Another friend commented today that you don’t need to have all the pieces so to see the big picture. How very true. Do you like what you see in your evolving picture?

Fear of the consequences or of failure are a natural part of life, I think. Was it Edison that said he hadn’t failed, rather he’d found a thousand ways not to create a lightbulb. Or words to that effect. The point is, not to give up. We aren’t all meant to run at the same speed, some of us are better at being a tortoise than a hare. Who gives a rats ass if you don’t want to jump out of a plane? That was my dream. It doesn’t have to be yours. If you want to be the person who designs knickers that don’t ride up your bum, have seams in uncomfortable positions and actually do feel like you are going commando – please do! Undergarment design is not on my list of talents, but I sure as hell know the benefit of a comfy pair of pants!

Explore your talents (pieces); practice what gives you pleasure and eat chocolate in the knowledge that it doesn’t hinder the ability of your gut to steer you right.

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Epilepsy and Friends…

I have the best friends in the world. You do too.

My friends, my close friends, are small in number. I know a lot of people, I like a lot of people, I have a lot of people in my life that I care about. A massive part of my jigsaw is made up of those people and I wouldn’t be without them. Yet, there is an inner-circle if you like. I think we all have that inner-circle of people in our life. These are the people that aren’t necessarily always near us physically, but their presence and essence support us completely. I rely heavily on my inner-circle to be truthful with me, even when that honesty is brutal and sometimes hard to hear. It makes me love them all the more, because I know that, in their honesty, they love me.

A good friend of mine recently left her job. Things weren’t what she hoped they would be, so she summoned up her strength and she left that which was making her unhappy. She was true to herself and her desire to give her family the best life they could have. It was a tough decision for her, really tough. Yet, rather than stay unhappy, she chose to do something positive about her situation. She made her life-changing decision, while still finding the time to be strong for me when I needed her. She is another of my amazing friends who has been there for me through thick and thin. She is another who makes me question my truths.

A good friend of mine recently lost her job. It came as a massive shock to her, but she’s pulled herself round and has decided to take the opportunity to travel and see some of the world. One of the things that she said to me, really resonated. She said that she never thought that she would put so much of her sense of self down to a ‘job’, but she did. This friend was one of the angels that I didn’t know I had. She’s been one of the friends that’s always still been there when I come through one of my dark periods of epilepsy and battles. That one statement that she made, has got me thinking about what my sense of self is made up of. How much of that is influenced by epilepsy, how much by fear, how much of my soul is misplaced. Am I true to myself or am I true to what others expect of me?

Regardless of how often I try to make myself believe that epilepsy is only a tiny piece of who I am, I know it’s not true. Epilepsy doesn’t run my life and it doesn’t define me, but it has played a significant part in shaping who I am. I’m quite a sensitive person. I think about things a lot, I dwell far too much and I emotionally feel my way through life. I find the negative actions of others’ really hard to shrug off, even if their intentions are good. Having epilepsy, for me, is a very personal battle. I have lost friends through it. Even one or two that were part of my inner-circle have stepped out of my life because of it. They left a gap and a probably a bitter lesson.

But, I do have epilepsy. It is part of my life. It is a consideration in everything I do. My friends know that a trip to a rugby match, a trip to the cinema, a trip to the pub, could all result in a trip to the emergency room. In fact going anywhere with me could result in an impromptu medical excursion. I know that when I get out of bed in the morning, I might end up going to bed in a hospital ward. I know when I get dressed up to go to a wedding I might end up wearing a modesty gown with my dignity hanging out the back of it.

Am I true to myself? Yes, in some aspects of my life. But in others, if I’m brutally honest with myself, then no, I’m not being true. I’m living the life that’s expected of me because I don’t want to let others down and I don’t want to see disappointment scrawled over their face when they look at me. I don’t want to have to explain myself. Being true to myself would be hard, but ultimately so much more rewarding. I’d be happier, I’d be fiscally poorer, I’d be emotionally richer, I’d be fulfilled, and I won’t go to meet my maker with a lifetime of what-ifs. Sounds like a no-brainer really, so why is it so hard?

I’ve supported my friends in making their life-changing decisions. I’ve actively encouraged them to live a life of joy. So why can’t I take my own advice? It would be easy to say its because of the restrictions I have because of epilepsy. It would be easy to say that and I could probably convince all but my inner-circle that it’s true. But I would know its a lie. It would be easy to say its because I can’t afford to, but can I really afford not to?

In order to be true to yourself, you have to know yourself. In order to know yourself you have to push out of the comfort zone and test your limits. You may fly and you may fall but your friends are your support network and I have no doubt that mine would catch me.