4

Tired?

It’s been around 3 months since I last wrote a post. It’s not been the best 3 months of my life. I seem to say things like that a lot these days. I don’t think I’ve had a great 3 months since before the MS diagnosis. Nothing has been the same. Everything is different and I’d be lying if I said I was finding coming to terms with it all has been easy. I thought I was possibly starting to get to grips with things finally when the epilepsy episode premiered in November last year. Armistice Day to be precise.

I haven’t written because I’ve been scared. Scared of the consequences of truth. In my experience, the truth is often the hardest to hear but the most useful. The odd lie to save a hurt is fine, in my book, but ultimately lies lead to nowhere happy. But my truth, I’m having issues uttering. I can’t say that I really know why. I said it was fear of consequences but I think that is only part of it. I don’t want people to be more afraid for me than they should and I don’t want a blog post of mine to be the catalyst that throws a person into thinking that I’m suicidal. I’m not. Don’t get me wrong. Dark, troubled thoughts plague my mind 24/7, but am I actively planning my end? No.

Everything going on in my head is exacerbated by fatigue. I’m not tired. At least not tired as most folks relate to it. A few hours sleep ain’t gonna fix this situation. You know what it feels like to be tired right? Long days at work? Small children? Overdone the gym? Gardening too much? You know that tired. That tired when you sink into bed and sleep soundly and feel refreshed the next day, right? Oh I know, everyone is tired these days. No-one rests enough, there is always a deadline to meet or a task to be done and lord forbid it doesn’t get done! I hear everyone saying how tired they are. Yet, I wonder, are they tired, like I’m tired?

A long time ago someone said to me after I’d complained of being tired, that I had no idea what “tired” is because I don’t have children. Apparently, only those who have kids are capable of being truly tired. I beg to differ. I still don’t have children and I definitely know what it feels like to be so exhausted you can’t see straight. Can’t think straight. Can’t function in normal daily life. I know it because that is my daily life. That is the gift that MS has given me, one of them anyway.

Tiredness has always been with me because of my epilepsy. I’ve complained of tiredness a lot over the years. Yet, now, I’m not tired. I am utterly fatigued. Mentally and emotionally overdrawn in every account. This fatigued isn’t something that will be fixed by a cup of hot chocolate and a night’s sleep. This fatigue comes after the sleep (if you can sleep that is) and appears before you’ve got out of bed. Sometimes, it feels like you can’t get out of bed. It’s too much. Everything is a trial. Everything is an effort. Everything. Having a shower, getting out of bed, getting dressed, you name it. The fatigue is all-encompassing. It controls every aspect of your life. I don’t want to cancel the evening out, but I simply haven’t got the energy to go.

There are days when I simply can’t think straight. Tasks that used to come quickly, easily and even naturally to me, I have to think about and really focus on completing. The fatigue is front and centre the whole time. There is no pill I can take, no amount of Red Bull is gonna give this girl wings and, though I rest when I can, no amount of downtime really helps. It is soul-destroying trying to live with this level of fatigue. Utterly soul-destroying.

The MS diagnosis changed my life in ways that I couldn’t have even imagined. Over the past 3 months, my level of acceptance of my situation has depleted rapidly. I’ve tried really hard to stay positive and see that having MS isn’t the end of the world. God knows I’ve tried. I spent years coming to terms with epilepsy. I truly don’t think I have it in me to accept, embrace and live alongside another life-changing condition. I follow umpteen folks on social media who seem to be able to deal with their MS. I do wonder, given what I know about my situation, whether they are telling the truth, the whole truth and nothing but the truth. Trying to spread positivity is fantastic, it really is. Yet I can’t apply it to my situation. And part of the problem is the bloody constant fatigue.

I actually deleted my FB account a few weeks ago. There were a couple of main reasons. Firstly, I was totally fed up with reading about the wonderful life of others. Yes, I’m completely aware that it’s not all sugar and spice and a lot is covering up a much harder truth. But I just couldn’t stand to see it. The second reason was seeing the bitterness creeping into my own posts. I could see what I was writing was oozing it. I didn’t like that and so I deleted the account. Do I miss it? No, not really. It’s a shame I don’t get to connect with some people as often, but I can put my hand on my heart and say, no, I don’t miss it. I’m left with other forms of media though and I’m able to contain my bitterness on those forums.

I was posting a bit about my fatigue. I thought by writing it down I might see a way through it. That didn’t work. I feel consumed by it. How do you accurately portray that? I’m trying to explore this with a neuropsychologist. It’s become really apparent to me, that I need help to deal with this diagnosis and find a way to accept it and live with it successfully. I’m crying as I write this, because, right now, I simply can’t see a way through it. I can’t see how I can regain Kirsty. It seems to me she has gone.

To be fair, I cry a lot these days too. Being so fatigued you can’t see straight isn’t conducive to dry tear ducts.

This post has been tough for me to write. It represents an opening of a window in the outer wall that surrounds me. My neuropsychologist, I may call him NP from now on, asked me why I don’t accept the fatigue I feel as physical, but rather as emotional. I couldn’t answer him, because I don’t know. It’s something I’m trying to explore. He wants me to try to accept that the fatigue really is real and it affects me in a physical way. That, obviously, is the high-level overview, there is obviously a lot more that has passed between me and NP but perhaps I’ll get to that…

I know this post is disjointed and I know it’s because it’s been really emotional for me to write it, but there you go. I was going to re-read, correct, amend and make it flow better, but you know what…I’m tired and I simply can’t be bothered. Perhaps there will be a part 2 sometime!

The next time someone tells you they are tired before you make a wisecrack, be sure they aren’t covering up something much bigger.

 

0

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!!

0

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?!

2

What’s the difference?

I’ve always tried to be open and honest about my epilepsy and how it affects me and therefore, potentially you. There are several reasons for this, the main one I admit is for a selfish reason – it is better for me if you know that I have epilepsy and so if you see me having a seizure you are less likely to panic as you know its “normal” for me. Secondly, I always offer to talk about the disease, the effect it has on me, my family and my friends; this, I believe, helps to raise awareness and go some way toward dispelling the stigma that unfortunately still surrounds the disease. I’ve talked about my own experience with stigma before (Epilepsy and Stigma…) so I won’t labour the points here, but it saddens me that it is still something that we have to cope with along with everything else. I also, selfishly again, like people to know that a diagnosis of epilepsy doesn’t have to be the end of the world. Although, I admit, sometimes it can feel that way.

Often, one of the first pieces of information a newly-diagnosed epileptic (yes, I know that in this modern world “epileptic” is a label that we shouldn’t use, but as far as I’m concerned I am epileptic, in the same way, that I am brunette and that I am green-eyed. It’s a descriptor in my book and not a bad word) is given, is a list of the things they can no longer do. Driving, swimming, diving, etc. Few, in my experience anyway, are given a list of things they can do. I like to believe that this is because the list of cans far far outweighs the list of can’ts. Even then, what we are told we can’t do is often a slight misnomer. For example. I was told I couldn’t swim anymore. I virtually lived in the pool. I swam every day for my club, I also was a regular high board diver. Being told that I could no longer go to the pool was devastating to me. And, it wasn’t true. I emphasise here, that there are many people who suffer far worse than me from their seizures and for them, perhaps, it isn’t safe. What I wasn’t told, was that providing I was accompanied by someone who knew of my condition and how to help me and that I informed the lifeguards on duty, then there was no reason why I couldn’t continue to swim. I did lose my driving licence and I’ve never been able to get it back. This is because my seizures can be unpredictable and while I have gone the required 12 months (it used to be 24) and so I could apply to have it reinstated, it would not happen as I can’t demonstrate that I am controlled and my GP would not sign it off. I think I miss the freedom that being able to drive would bring on so many levels, however, I balance this with the knowledge that I will never cause an accident through having a fit at the wheel and so potentially ruin another life.

Telling people I have epilepsy usually elicits two responses. The first, the most common, is that there is simply no acknowledgement of the information. That’s totally fine with me. I recognise that while I’m comfortable talking about it, others perhaps aren’t and for a myriad of reasons. The second response, is generally, “thanks for telling me that, it’s useful to know. Perhaps you can tell me about it?” Yet, what I only very occasionally hear, is “I have a friend with epilepsy” or “my xx has epilepsy”. In the 20 years or so that I’ve been extremely open about my disease, I can count on one hand the number of times that response has come. My experience sharing my MS diagnosis has been vastly different.

Telling people I have been diagnosed with MS has been a completely different kettle of fish, to announcing I have epilepsy. Firstly, it took so long to get a diagnosis, that I couldn’t tell people what was wrong, all I could give them was a range of afflictions of varying severity that it could be. The medical debate as to whether my optic nerve issues are MS or something else still rages on, but for the purposes of this post (and my mental well-being) let us pretend that it’s all MS related.

The initial similarities between the reaction to the MS diagnosis and the one for Epilepsy are actually pretty similar. Although, I guess that’s not really much of a surprise. Shock, terror, panic, tears etc were all present on both occasions in the early months following diagnosis. My lack of knowledge about both diseases was a factor. Epilepsy when I was 17 simply wasn’t discussed, I didn’t have Google (this was 1988 people) and I dealt with everything by internalising it. If I didn’t acknowledge it, it wasn’t happening. The classic, as my brother often describes it, sticking your head in the sand and hence leaving your ass exposed. I knew nothing at all about epilepsy and my knowledge of MS started and ended with horror stories, Jacqueline du Pre’s death springs to mind as being the only real story I knew of where MS was the destruction of her career and life. She was younger than I am now when she died. The only other exposure I had to MS was hearing about other tragic stories in the media. So my complete lack of any factual knowledge of either disease was total. As an adult, I think that I dealt with my MS diagnosis in a bit more of a mature way. At 17 I didn’t know what to ask and of who. Being as I’d basically shut down, then chances are I wasn’t going to ask anyway, but perhaps if I’d been pointed in the direction of a support group, then it may have changed things for me. Who knows? At 45, I asked questions. Sometimes, I didn’t get answers, sometimes I didn’t want to hear the answers, but ultimately, I had/have to face up to the facts as they present themselves.

When I did start to tell people I had MS, it usually elicits two responses. The first is along the lines of “oh shit” or “chr*st” or words to that effect. These responders are generally the ones that had the same negative exposure to MS that I’d had. The other typical response was a complete surprise to me. It’s along the lines of “my xx has MS” or “I have MS too” or “I know a couple of people with MS”. I did not expect this. Perhaps I was vain to think I was the only one!! It’s estimated that about 100,000 people have MS in the UK in 2016, while the figure for epilepsy is 500,000. It’s mainly for that reason that I was so surprised just how many people who I know and see regularly, have firsthand experience of living with MS or know someone who does. Given there are 5-times as many people with epilepsy than with MS, I’d have thought I’d know more people with exposure to epilepsy.

Does this mean anything? Does it mean there is less stigma attached to MS and so people are more likely to admit they either have the disease or know someone who does? Or does it mean that people with epilepsy are less likely to acknowledge their condition, especially if it’s well controlled? I don’t know the answer. I find it fascinating though.

The first person to be “officially” diagnosed as having MS – albeit posthumously – was Augustus d’Este, the grandson of The Mad King, George III. Although he wasn’t diagnosed during his lifetime, the diaries that he kept detailing his symptoms allowed for the diagnosis to be made. He kept diaries of his condition for 22 years, with the final entry being made 2 years before his death in 1848. However, the disease can be traced back to the 14th century to Saint Lidwina of Schiedam Although she died in 1433, historical texts tell of difficulties in walking, pains in her teeth and terrible headaches. This gave rise to the probability she suffered from MS. However, epilepsy has been documented as far back as 400BC with Hippocrates, no less, dismissing epilepsy as being no more sacred than other diseases in response to the belief at the time that epilepsy or the falling sickness was some kind of supernatural affliction.

There are long lists of famous people who have lived or do live with epilepsy. Bonaparte, Julius Ceasar, Dostoyevsky, Alexander the Great, Lewis Carroll and Prince to name just a few. Yet, I can’t find a similar list stretching through the ages for MS. The lists for those suffering MS seems limited to those currently living with the disease or those, such as Ms du Pre who have passed relatively recently.

I find the differences and similarities between MS and Epilepsy absolutely fascinating. The stigmas, the discussions and the history of both diseases being a source of both wonderment and inspiration.

0

Sleep, Einaudi & escaping the prison…

It’s nearly midnight and I can’t sleep. Again. Not even the melodic strains of Ludovico Einaudi can soothe my soul tonight. I don’t think its even been a month since I last wrote about this topic. It seems to be a recurring theme in my life! The desire to sleep is there, the need to sleep is present but the act itself..? Nope. Not happening.

Someone suggested to me, that perhaps I’m overthinking it and that’s why it won’t come. It’s a fair observation and I said as much, but its hard not to dwell on it when you’re lying in bed. Awake. The sounds of steady breathing all around conspire to make it even more soul destroying. Who’d have thought breathing could have such an effect on another person!

If I think about it long enough (and I have, frequently) then I conclude that the act of not sleeping in itself, is not the issue. The real problem is the next day. This is when the fatigue really sets in, The inability to think clearly becomes apparent and the temper gets just that little bit shorter. All the while there is a niggle at the back of the mind that the situation is not only a repeat of yesterday, but perhaps it will happen again tomorrow. I understand the need to detach from the past and the future and just be present in the, well, present. Yet, I find it difficult and have not yet found a method of disengagement that consistently works for me. For example, I could listen to Nuvole Bianche on loop for hours and I would feel my shoulders drop and my mind sooth and my body sway. Calmness would reign supreme in my soul. The gentle tune lulled me to sleep and was often still playing when I woke. While I can still count it as one of my all-time favourite pieces of music and it has been for well over 10 years now, I can no longer guarantee the result. Yes, my fingers still airplay the notes and my mind strives to be still, but the elusive slip into sleep remains evasive.

I recently read Edith Eger’s book The Choice. She shares her stories of surviving the Holocaust and how she built a new life. She recounts her experiences with those suffering PTSD and how she helps others to face their traumas and heal. There are a lot of fascinating, disturbing, remarkable and uplifting experiences that she shares, but there are a few lines that have really stuck with me. One of them is “We can choose to be our own jailors, or we can choose to be free.” I’ve turned that phrase over in my mind a few times while I’ve been waiting for sleep. Our minds are incredibly powerful. Is Ms Eger correct? Unless we confront that which causes us suffering we can never heal?

That’s a big subject and maybe I’ll get to that one day. But, in the context of sleep, or lack thereof, I’m trying to find the root of the sleeplessness, so I can confront it, learn from it and then banish it.

I like to think I’m a fairly intelligent person, open to new ideas and the like. So, I have tried the usual initially suggested methods of trying to get more, better quality sleep. Quality is more important than quantity as is so oft the case. I’ve spoken about them before here, so I’ll not labour the point again. But, I’m still to find the piece of magic that will work for me. I know my mind is busy and I suspect that is the main cause of my inability to sleep at the present time. I can’t seem to stop my mind from dwelling on my current situation and much as I try to find the positives in most situations, I’m struggling to see how me and MS and me and dry rot, are ever going to be friends.

Epilepsy and I have come to a sort of mutual understanding. We live side by side in an uneasy alliance. But epilepsy is a jealous bedfellow. The fatigue MS causes, is antagonising my epilepsy. Fatigue is a pretty major factor behind my seizures, another reason, probably the main reason, why I need to get some sleep. I don’t think we even need to go into the whole stress angle of this situation! It is one helluva vicious circle that I’m caught up in. And, I just don’t know how to break it.

So let’s talk about drugs for a minute. Sleeping pills specifically. To pop or not to pop that is the question. I’ve always tried to avoid taking prescription sleeping tablets. I don’t really want to take them being the biggest reason! I’m a little scared of them if I’m truthful and I would rather find a natural solution to my troubles. That said, I recognise that they have their place and that they can be a helpful aid to sleep for some. Yet, I can’t help but think that the sleep they induce isn’t real sleep. It’s kinda fake. It doesn’t seem like a natural sleep, so while the quantity of the slumber may increase; what about the quality? About a month into the saga that has developed into MS (& still possibly something else besides) I wasn’t sleeping at all. Nothing. Nada. Zilch. At the same time, I was experiencing what can only be described as indescribably weird sensory issues. I was prescribed a medication that would help with the sensations (i.e. it would dull them) and as one of the side effects of the drug is drowsiness, it would help with my sleep. And it did. I slept for about 15 hours. I woke up feeling sick, disorientated, lethargic, scared and wishing I’d never taken the darn thing. A one-off perhaps? Maybe, but I don’t know that I’m willing to take that chance. Yet, perhaps desperation will take me there.

Well, I’ve got more questions than I have answers. I’m desperately trying not to worry about the rot and all that fixing that will entail. I’m trying hard to accept that MS is now part of my life and I just have to get on with it. I’m hoping that my epilepsy will settle down and stay quiet for a while. I don’t know how to deal with just these 3 things and still switch my mind off in order to sleep. Yep, I know I can’t control much of it and yes, the logical part of my mind says “if you can’t control it, then don’t worry about it” but the part of me that needs to understand just how to do that, is not getting it. Not getting it at all.

So, I’ll be the one who is awake with Einaudi, chamomile tea and surrounded by the sounds of steady breathing.

0

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.