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Rambling weebles

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

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

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

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

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

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

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

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

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

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

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

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

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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…