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.

2

MS and Pizza. Here we go again…

Two weeks ago I was back in hospital to have more tests and to take part in #msfuture. MS future is a clinical study that takes newly diagnosed MS patients that have not yet started medication and takes tests at the beginning of their journey and then repeats the tests after one year. 

The results of this study will not help me. However, if the scientists and doctors performing the trial can use the results to identify what is different in the way MS sufferers biologically and chemically present then it could help them find ways to manage (or even help prevent) the condition in the future. I am number 153 in the Scotland-wide study. For those that don’t know, Scotland has one of the highest levels of MS in the world! I found out at 45 I was affected, so it can happen to any person or one of their loved ones at any time. That’s not meant to scare, it’s a reality and one that I wasn’t aware of until about 6 weeks ago. Life can be brutal and beautiful at the same time. Yet, remarkably few people choose to take part in these trials. I know it can’t help me, but maybe it can help my niece, my cousin, my friend, my colleague or a complete stranger in the future. And all it took was my time, a bit of blood and a couple of cognitive tests. 

I can totally understand why people choose not to take part. Dealing with the diagnosis is enough to handle. Yet, the condition won’t just go away. I feel like I’m giving back in some way. I don’t want anyone else, let alone a relative or friend, to feel the way I’m feeling right now. It took a few hours and life is sacred and time is precious. I’d rather spend time helping a future sufferer than moping about my own situation.

All that said, I’m no saint and I am human, so when I went back to hospital last week for an appointment with the neuro-opthomologist to determine if I would need specialist equipment and if my vision was holding steady, the news I got floored me. Again.

The appointment I had was with the neuro-opthomologist, yet he chose not to see me, instead he sent “a colleague”. At first I thought maybe he was sick and not in the hospital that day until I found out he was actually in the consulting room next door and his “colleague” kept going to him and asking his opinion on certain things. I could even hear him telling his “colleague” what to ask and about what my responses had been! Surely it would have been far quicker and less likely to introduce error if the man had just chosen to be in the room with me?! Even if his “colleague” still did all the the testing and talking.

After he had picked up all the lenses he had dropped on the floor while examining my eyes, “colleague” then told me that they still didn’t fully believe that my visual problems are MS-related and in fact could be a completely different issue. I was shocked, floored, upset and confused. Hadn’t I waited months for them to rule out other conditions while I waited for the MS diagnosis? Are they now telling me that I don’t have MS or are they telling me that I do have MS but I also could have another condition. He wouldn’t be drawn on that question. By that I mean, he just didn’t know. It was at that point I shut down. I couldn’t take this in. He was telling me, I think, the condition that it could be but I can’t recall what that is. If there was a chance it was an eye condition that presents in a similar way to MS, but isn’t NMO, then why the heck didn’t they do these tests while I was being tested for everything else??? I don’t understand that. I mean they tested me for virtually everything under the sun, but not that?? I can’t help but think that if this neuro-opthomologist had seen me months ago when he was first asked to, then this might not be happening. Then I wouldn’t have been lulled into the false sense of security of an MS diagnosis. I feel like I’m back to square one. It’s probably MS, but it might be something else instead of, or as well as.

My experience of the NHS til this point has been wonderful. The nurses, the doctors, the consultants (one notable exception) have been exceptional. Then this. I was first sent for more blood tests, to a nurse who couldn’t have cared less. My blood was leaking out of me slowly and she obviously couldn’t be bothered to wait until the final vial was filled and she just decided “I suppose that will be enough”. If that amount is “enough” then why is the vial not that small??? No answer, just a shrug. Obviously 2 more minutes of her time, was too precious than the potential of me having to go back and have yet more blood taken. She then sent me on my way to go for a chest X-ray (the reason for this X-ray, is still not clear to me, but in trying to be fair to “colleague” he probably did tell me, he just didn’t appreciate that I’d shut down). Her directions were, “right, left, right and then go along the huge long corridor, then ask someone else. Needless to say I got lost. Several times. Eventually an orderly took pity on me and walked me to where I needed to be. Thank you kind stranger.

At the X-ray department the extraordinary staff of the NHS I’m used to, reappeared. Smiley, friendly, courteous, understanding and sympathetic. Yay. After a few attempts at the X-ray, accompanied with an explanation of why there was a few attempts, a few giggles and detailed instructions of how to leave(!), I went home. Gutted. Confused. In tears on the bus. Fearful of my future yet again. 

I wanted pizza. A message saying as much to Daniel my PT, gently convinced me otherwise. Again I have to thank Edinburgh Fitness Solutions for not only helping me turn my physical life around, but supporting me through my mental and emotional anguish. 

The tears continued for a while and eventually stopped and the resignation to this situation appeared. All I can do is focus on what I can control in terms of my health and fitness. Friends say the doctors are only trying to do the best by me and make sure that the diagnosis I have is the best one. On some level, I get that and am grateful for it. What I don’t understand is why it’s happening now and not months ago when I was going through all the other tests. Why have they waited until I’m about to embark on a pretty brutal drug regimen alongside my epilepsy control to decide to introduce this new complication. Why didn’t the so-called expert first see me when he was supposed to and secondly even deign to be in the same room as me?

I’m scared. Again. I’m confused. Again. I’m deflated and I’m worried. I want answers. I need answers. I deserve answers. 

But, I don’t want pizza. 

0

MS, Epilepsy and Cooking…

There has been carnage in Kirsty’s kitchen the past couple of weeks! I have made a few conscious decisions based on my health situation and it’s time to follow through.

Those who know me well, know I like my food. I enjoy my food and I prefer it with either coffee or wine. Yet, for the sake of my health and to feel like I have a modicum of control over my body, I have chosen to change my lifestyle and that includes reviewing my diet.

I have decided that I am going to switch up my previous carnivore ways and move toward a wholefood, plant-based eating plan. In case you’re wondering, this means no meat, no fish, no dairy and no eggs. Why? Why? Why? I hear you cry (unless of course, you’re already eating this way and are whoop, whoop, whooping instead)! Let me explain…

Just a couple of weeks ago, I was delivered news that put my world on it’s head. In all honesty, I was (& probably still am) devastated by the news that I had MS. Brave public face aside, I was/am crushed. All I could see were dashed dreams & tattered hopes. But, I chose me. I’ve decided not to admit defeat to a disease. I’ve resolved to do what I can do to make positive changes in order to have the strength to meet the challenges ahead, head on. One of the few aspects of life I can change is what I eat. My brain does have an input (think cravings) but it also desperately needs proper fuel to fight disease.

So, for me, moving toward a wholefood, plant-based way of eating is a way of having some control and an attempt to make myself feel better and stronger. The benefit to animals and the environment, I have to admit, are secondary in my thinking at the moment. This is all about me, me, me. I’ve known for quite a while now that my lifestyle didn’t really do me any favours, so regardless of whether the changes to my diet and the fact I’m working out with Edinburgh Fitness Solutions have any affect on my neurological afflictions, they should have a hugely positive impact on how I feel in myself. 

So that’s the “why”. The “how” is where I’m at!!

Changing a long-standing habit isn’t easy. Especially if, like me, you find it a struggle to “give things up”. So, I decided that I’m going to do things a little differently. This is where it is useful that I’m doing this for myself and not because I’ve been told to by any medical professional. As far as I understand, there is no proven way to eat yourself out of MS. So, that gives me both a comfort blanket and a safety net. It also means I don’t have to give up habits overnight. I’ve done my research and I’ve decided that for me, my body, my lifestyle and my health, trying a wholefood, plant-based way of eating could be beneficial. There is no guarantee that it would work for everyone, but I want to know if it will work for me. So, I’ve been transitioning.

I’ve sought out and spoken to people who choose to be vegan (yes, that’s the generic label), to find out their experiences and get any hints and tips. I’ve done some research and am fully aware that being vegan doesn’t automatically make you healthy. And that’s why I’m also reducing the amount of processed foods I eat and why chaotic carnage reigns supreme in my kitchen! One of the people I spoke to advised me not to think of it as giving up certain foods (cheese, milk & eggs being my biggest worry) but to regard it as an opportunity to try new flavours, textures and foods. That way, you will be less likely to feel deprived and that you’re somehow missing out. This is working for me. 

So, I’ve been going through this transition for about 3 weeks now. It’s going well, I think. I’m rediscovering my taste buds and some foods that I previously decided I didn’t like, I’m finding that actually when I try them, they’re not so bad. Meat and fish have been the easiest to let go of. The meat surprised me, as I thought of my self as a major carnivore! Cheese was a little more of a struggle, but through trial and error I’ve found an alternate that I can happily live with. Milk in my tea – wow. Tough!! Coffee, if it’s good quality, I can happily drink black, but tea? No way. Tea with soya milk? Bleurgh! Tea with oatmilk? No way Jose! Tea with hemp milk? Not a chance! Tea with coconut milk? Like hell!! Black tea? Well I’m getting there. I’m finding that rooibus is working black and my favourite, Earl Grey, if it’s good quality and bizarrely decaf, then yes, I can do that.

Most folks don’t know that I’m moving toward this new way of eating. I’m not being evangelical about it (there was no way I was missing out on a surprise Afternoon Cream Tea on Saturday) but the more people find out I’m choosing this way to eat, and the more eateries I discover to cater for this way to eat, then all the better.

The last blog I wrote stated “I choose me”. I stand by this. I’m doing this for me. So far, most have been supportive and those that haven’t? Well that’s fine too.

0

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.

0

Two Neurological Conditions….Lucky me!

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

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

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

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

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

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

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

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

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

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

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