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.

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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

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.

0

If wishes were horses…

…beggars would ride, but it’s the squeaky wheel that gets the grease.

I love a wee idiom or two.

I’ve been trying to find an idiom I could use to make light of (because god knows there seems to be no reason) or would aptly describe my latest medical mystery. A sight for sore eyes maybe? That could, at a real push, be sort of manipulated to mean that an answer, a proper answer, an answer with a definite yes or robust no, would really be very welcome now. The situation is really getting on my last (optic!) nerve.

It’s not my last (optic) nerve yet. The prognosis doesn’t look encouraging though.

So the results of the tests that I talked about here, are back. Sort of. The X-rays were “clear”. Clear of what I’m unsure of and frankly too scared and tired to ask. This time I actually got seen by the ophthalmologist I should have been with on my last trip to the hospital! Maybe that’s the miracle I’ve been waiting for? More likely he couldn’t find a minion…Anyway, after announcing the “good news” about the chest x-rays – I have one, that’s good news and it’s “clear” so I should be grateful for small mercies; I thought the only way is up! I allowed myself to feel hope! After all, it was the x-rays and the bloods that were determining my future! The bloods were also claimed to be a combination of “fine” and “inconclusive” so I felt quite secure in my hope. Then, in the blink of an eye (haha) he ripped my comfort from under me.

Sod.

After examining my eyes. Again. Then repeating it. Then numbing the eyes with the horror that is the “yellow liquid”. He starts to make noises such as “hmm” and “well”. The cold feeling is back in my chest. (I suspect they can’t see a cold feeling on an X-ray). I wanted to weep. However, my eyes were already crying lemon tears and the numbness was having none of it! Apparently, the optic nerve in my right eye is deteriorating. This is new. It has always been the left eye that has the caused the most concern. The right, while not a particularly happy little bunny, was trying its best to be good. I asked the obvious question – what??? (Said in a slightly high-pitched, very unbecoming, almost screech like tone). You were only supposed to tell me that I don’t have ocular sarcoidosis, you weren’t meant to be introducing more problems!!

Apparently, he’s not sure why it’s deteriorating. So, he says we need to look at the previous images taken of your eyes. Sounds reasonable I think. Do a comparison. See what has changed. Until he asks me if I have them. Numb eyeballs are trying to do a shocked expression. I can feel the expression in my soul, but bloody eyes are yellow and not playing by the rules. No, I don’t. But they are right there in your little computer that houses my bloody medical records that are now resembling an A4, small print, pdf version of War and Peace, but with the emphasis very firmly on war! The numbness in my eyes spreads to my mouth. This is an unfamiliar feeling for me. I’m not often lost for words. He then seems to come to the same conclusion himself but decides he can’t really decide what the images are showing and he needs to confer with one of my neurologists. And there was me thinking I was actually in the presence of an ophthalmology god. Silly me.

So, my temporary dumbness dissipates and I ask him what it all means. Apparently, it all means jargon. Followed by a bit more jargon and with a generous sprinkling of not sures. It could be demyelination associated with MS that may require an intervention (I do not know how many times I’ve heard that term when describing my conditions) but if it isn’t that, then he doesn’t really know. They don’t think its NMO, they don’t think its Ocular Sarcoidosis, but it could be another type of optic neuritis, but what type remains a mystery. I wonder if they get paid by repeat visit based commissions….?

I wish I had an answer. Actually, any answer will do right now, as long as it’s the final one. It doesn’t even have to be a pleasant one, but this not knowing what I’m dealing with is just hellish. I don’t feel my sight has got any worse and I’m still dog-tired, so nothing much has changed there. So, this news came as a bit of a blow. And its news that has no immediate answer. I don’t know how to deal with that. If my nerve is going to continue to deteriorate and I’m going to lose my vision in that eye, then I want to know. Now. I want to be able to prepare. Train the cats to be guide dogs (then take them to the office as such hehe) or at the very least make a viable plan for the rest of my life. (Sounds dramatic, but it’s how I feel therefore it’s valid). As it is, I’m just about back to square one.

The only real difference between square one and now is that I do have MS, I do suffer from incredible fatigue (as opposed to the general knackered-ness I used to feel), and I glow bright red twice a day (thanks drugs!).

So, I wish for answers, but until I get them I shall continue to be that squeaky wheel that keeps making enough noise that it really irritates those that have to listen to it, but might be just loud enough for someone medical to do something about it.

4

Sick and tired of being tired!

I am so tired. Yet, I can’t sleep. This is getting really old, really quickly.

Fatigue has always been an issue for me. I’ve written about it before and perhaps the dots are beginning to connect. I always believed this enervation was related to my epilepsy. Yet, it would seem that it may be a combination of having epilepsy and MS that is giving me an exhaustion double whammy! I looked up the definition of fatigue. It said all the things you would expect the dictionary to say, such as “weariness from bodily or mental exertion”, but I think the definition of fatigue as it pertains to civil engineering is actually more apt. Civil engineering says it’s the weakening or breakdown of material subjected to stress, especially a repeated series of stresses. My body and brain are the material and the repeated stresses are pretty obvious. Dealing with epilepsy is one stressor, dealing with a recent and raw diagnosis of MS is definitely another.

I spoke in my last post as having chosen to take control over that which I can. The constant tiredness is making that choice a difficult one. How do you explain to people that you are so tired, it’s a battle to persuade yourself to throw the covers back, let alone get out of bed? How do you describe the anguish that such a tiredness causes? I know that my tiredness is genuine. I know that I’m trying to find ways to try to combat it, yet I still feel like a fraud. I feel like people will think I’m just using it as an excuse. Don’t get me wrong, no-one has said that. It’s all down to me and my lack of confidence and assumption that I’m being judged. But, it is a real feeling for me and one that just adds to the weakening of my materials. No-one can fix that for me.

It’s easy to say “it doesn’t matter what anyone else thinks, so don’t worry about it”. We’ve all said it. God knows I’ve uttered those words on numerous occasions. It’s very easy to give that advice but no-one ever explains how you do it. How do you peel back the years of conditioning that has lead to a fear of being judged? I don’t know the answer to that. I guess years of counselling? CBT? I’m digressing a bit, I’m going to go back to fatigue and maybe get to those other issues later…

So, fatigue and what it does to me. I’m fairly confident that exhaustion, whatever the root cause, has the same effects on most people. Brain fog. Cloudy judgement. Memory loss. Can’t be bothered to wash my hair. Headaches (they’re a huge issue for me). Listlessness. Caffeine is a new best friend. I feel a strange heaviness. Yet, this is all coupled with then being too tired to sleep. My brain just won’t switch off. I’ve tried all sorts. Chamomile, lavender, salt, cool room, no electronics, no caffeine, nothing too stimulating, wine. All sorts. But please don’t suggest a warm bath with relaxing oils. I don’t have a bath. And before you say have a warm shower then…it, frankly, just isn’t the same.

So, there is a school of thought that no matter how horrendous the idea, exercise is the way forward. I struggle to find a decent argument as to why a bit of gentle moving about wouldn’t help, but I also really battle with the thought of actually doing it. I’m so tired I can’t think straight, how on earth am I meant to walk for 45 minutes?? I’m being a tad facetious by saying that, but the cold, hard fact remains that if you feel like you can’t get out of bed, how do you make yourself want to do some exercise?

I have tried to take control over that which I can influence. One of those things is to exercise more. I’m doing not bad at that. I’ve overhauled my diet too. (Actually, there’s another thing that I really am far too tired to do…the bloody dishes after another session in the kitchen)! I’m not seeing either of those changes, which are pretty major for me, having much of an influence on my sleep. I’m not going to stop doing those things, when I’m not so tired I know just how much they benefit me in other ways.

I’m back to work now and it’s a relief to be getting into a routine again. I’m so glad to be back. Things have changed at the office and yet they’ve stayed the same in so many ways. I’m trying to catch up. Truthfully, being back has been much harder than I thought it would be, in terms of how draining I find it. That’s a mixture of my brain starting to work again, worry that I don’t know what I need to know, fear that I’m being judged and trying to deal with the fatigue that I was suffering anyway. I’ve said before and I’ll say it again – my work has been brilliant. They’ve been supportive and flexible. I’m realising that I’ve been too ambitious in my return to work plan. I find it so hard to admit that.

I’m being told by many people to be kind to myself. I always think that’s such a lovely sentiment. However, I don’t know how to apply it. What exactly is being kind to myself? A subjective question I guess. One for more pondering.

So, here it is in a nutshell. I’m not lazy, I’m just bloody knackered. I’m not a skiver, I’m just exhausted. I’m not a robot, I’m human. MS attacks every sufferer in a slightly different way. Fatigue seems to be a very common factor though. Epilepsy is slightly less random and constant fatigue is definitely a factor, but more worrying as a cause than a result. So, here’s my dilemma. Fatigue is a worry as it definitely makes me more likely to have a seizure. MS makes me fatigued. What the merry hell am I supposed to do?

Answers on a postcard, please.

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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MS, Tomatoes and Jackfruit…

About 3 hours ago, I took my very first dose of MS medication, alongside tablets for epilepsy and for depression. Apart from the fact I rattle every time I move, I also now look like a tomato and feel like I’ve eaten a pound of Carolina Reapers. I am on fire! My face feels like it is burning and a red flush has appeared head to toe. Apparently, this is normal. Awesome. (Insert appropriate level of sarcasm). I absolutely won’t be leaving the house today, but if you happen to see me later in the week then please feel free to snigger but if I see you giggling, I may have to unleash the nuclear arsenal that is now at my disposal.

Many of you are probably aware that I’ve been changing my diet to see how that would/could help me feel stronger in order to deal with killer tomatoes – sorry, multiple neurological conditions. I thought I would give you all a little update on how that’s going.

About 3 weeks ago, I more or less completed my transition to a plant-based whole food diet. I have cut out meat, fish, dairy and eggs and have greatly reduced my dependence on processed foods. My kitchen is in a permanent state of chaos but I’m loving cooking again. Experimenting with different flavours and textures. I’ve tried not to be too evangelical about my new eating regime and I’m ok if the odd splash of milk or egg has crept into my food through the ingredients in another ingredient (think dried spices, condiments etc), so I won’t call myself a vegan more that I’m eating a vegan-like diet. Anyway, I’ve digressed. So, dietary habits changed, I went to Krakow for the weekend with my non dairy-, meat-, egg-, fish-free Mother. I had previously decided and agreed with said parent that I wouldn’t force my eating habits on her and if that meant eating the aforementioned foods then so be it.

While I did manage to avoid meat in the main and fish entirely, dairy and eggs did feature quite heavily. As I was eating them, I can’t say with my hand on my heart, that I’d actually missed them. This surprised me. I thought I would really start craving them and go back to my previous habits, once I’d savoured a mouthful of scrambled eggs in butter or cheesy pasta sauces. What actually happened sealed my confidence in my decision to change my habits.

After 3 days of eating as I used to, my skin erupted in large, hard, sore lumps under the skin on my face (not having much luck with skin just now!). My digestive system went into complete revolt and I spent a full day in the hotel unwilling to be far from a bathroom. I had to leave my Mother to her own devices and I’m relieved to say she managed not to cause any diplomatic incidents. To me, this could only have been a reaction to the rich foods that I’d spent weeks eliminating from my diet. An egg and cheese overload, previously welcomed with open arms by my stomach and skin, was no longer welcome. I was actually craving something green and fresh.

Who’d have guessed?! Me, a person who previously had very little control over food and happily would eat whatever was there, no longer wanted or craved that food. Even if this new way of eating doesn’t have any demonstrable effect on any of my neurological conditions, I now have evidence that proves, to me at least, that it is actually better for my system. It is less inflammatory on my innards and it doesn’t cause my skin to be sore to the touch and lumpy!

While it only took my irritated insides a couple of days to settle down once it had some fresh fruit and veg, my skin took about a week to stop being a moody teenager and start getting back to, what is now, my new normal.

With a new sense of why I had changed my diet, I attacked the kitchen with a vengeance. Homemade this, homemade that, freezer full, grocery bill cut, I felt a bit smug. Well until the sheer volume of washing up hit me! Oh, how I long for a dishwasher! I decided to experiment with a completely new ingredient for me – Jackfruit. I’d tasted it when out for dinner with a friend but had no clue what it actually was, where you go to buy it and how to cook it. Google can definitely be man’s best friend. Jackfruit is a species of fig that is native to South India but is found throughout the tropical regions. Explains why it’s not often seen in Scotland. Apparently, it’s also the national fruit of both Bangladesh and Sri Lanka! Who knew? Not me.

Having established that the most Scottish-friendly way to get the fruit is from a tin and sourced a location for buying it, I brought this wondrous new food into my home. My first experiment, while not disastrous did provide me with a few lessons. Unlike other tinned fruits, jackfruit takes a bit more prep once its decanted. Don’t buy the kind in syrup but go for the one in brine and be prepared to have your mind blown. Ok, so that’s an exaggeration, but once I got the sizing and timing for the cooking, even if I say so myself, my BBQ Pulled Jackfruit (think pulled pork texture and look) was nothing short of awesome. An unmitigated triumph. A bit of a faff, but easy and a longer cooking time than I would have liked, but oh so worth it. Sweet, sticky, smokey awesomeness on a plate.

So while I wait for the test results that I talked about last time, MS and Pizza. Here we go again…,and now knowing that I’m being tested for Ocular Sarcoidosis (yes my medical file just keeps getting bigger), I shall comfort myself with my new find and probably overdose on BBQ Pulled Jackfruit.

I think tomatoes will be absent from my meals for a while though…