0

If sleep is for the weak…

No sleep for me again. My levels of fatigue at the moment are incredible but not in a good way. I want to sleep all the time and not because I’ve been burning the candle at both ends. I have a visit to the MS nurse this week and I’m really hoping she can suggest something that doesn’t come in a pill form to help me. I’m terrified of sleeping tablets and I’ve been on the losing side before, of a drug that was just meant to invoke mild drowsiness as a side-effect to dulling the effect of some of my MS symptoms. Coffee is my best friend at the moment.

Apparently though, I’m “strong”. I get that a lot. It sometimes makes me inwardly laugh as it seems my highly strung out, totally stressed and complete terror manifests itself as strength…in the eyes of others anyway. I wonder if my complete inability to acknowledge my fear and ask for help comes across as strength? Surely not. Perhaps it’s the fun I poke at myself and my epilepsy that makes people think I feel the same about my MS? I don’t.

God knows, when all this kicked off I tried really hard to be positive. Really hard. I changed my lifestyle to try to give myself a better chance of beating the odds, it didn’t last. I think the fatigue plays a massive part in this game. The more tired I am, the less convinced I am that I can scupper the negativity and regain the rosy view.

So that all got me to thinking invention and reinvention.

Invention, I suppose, is best described as the creation of something that didn’t exist. Then reinvention is taking something that exists and changing it to create something new. But, if necessity is the mother of invention, then what is the mother of reinvention? Evolution?

Take the wheel. We are often told that we should not try to reinvent the wheel, but was the wheel ever actually invented or rather did it evolve from something else? Around 5000 years BC there wasn’t any knowledge of a wheel per se. People – think Egyptians – used other methods to move objects. Logs for example. Logs are round(ish); wheels are round. So did the use of logs precipitate the evolution into wheels? The invention of the wheel can not be attributed to a single person. Around 3500 BC, across several cultures there is evidence of a wooden wheel being attached to carts. Then the wheel evolved further into the multitude of different “wheels” that we have today. As populations grew, trade increased and with other developments, I guess the invention of new circular objects, for example cogs, was required. Evolution is then the mother of reinvention, yes?

How does this relate to me then? Well, my life is evolving. Rapidly. These changes mean I need to make adjustments too. Is it time for a reinvention of myself? I don’t know. I’m rambling. It’s the tiredness…

The last few weeks have seen a new set of challenges. My Mum is in hospital, my Dad is using a washing machine unsupervised and the shower has started shooting water from the wall instead of the shower head.

The camel is, once again, being stacked with straw.

Sleep is for the weak…coffee is for the strong!

0

A little seasonal rant…

One of the final dialogues in the 3rd Night at the Museum movie, always makes me think. Larry the Nightguard says to Theodore Roosevelt “I don’t know what I’m going to do tomorrow!” Teddy replies “How exciting!!”

Not everything has to be planned to the final second. Sometimes, a bit of uncertainty can be liberating. Perhaps we have all got a little too used to planning our time to the Nth degree and panicking when it does not all quite go accordingly. My plan for today, for example, went belly up when I fell back asleep after my alarm went off. I didn’t plan that. It threw me for most of the rest of the day because I couldn’t then persuade myself to start on all the things I’d planned to do. I ended up actually completely wasting my time doing nothing. I flapped and I let a small thing like sleeping in, mess with me for the rest of the day. Actually, it would only truly impact me for about an hour. The rest of the waste was caused by my reaction to even a minor detour from the plan! Ridiculous.

Yet, I need some structure. If I didn’t have at least an idea of what I’m going to be doing, and when, I’d truly never get anything done. And so it is, I find myself at 1.05am, trying to plan the rest of my life. Just tomorrow isn’t good enough for me. I like to make grand sweeping plans, so I can beat myself up when I don’t achieve them. This breaking goals down into actions shit, just doesn’t seem to happen for me!

I find myself in a situation whereby my home is falling apart, my body is falling apart and my mind is just blown. I can’t seem to see past my daily struggles and they’re getting pretty overwhelming for me. I don’t know how much of that is down to me being in all-out panic mode and how much of it actually is something I should absolutely be concerned about. I don’t want to talk to anyone in case I find out something else I don’t want to know. I answered the phone today to hear that my critical illness claim (you know, the one that is going to help me manage my future with MS) is certainly not going to pay out the amount I claimed for (and am insured for) because of small print and technicalities. I don’t know for certain yet that it will be paid at all. My GP surgery only sent my notes for this past year, the insurance firm wants to go back a little further and that apparently means they are waiting for the surgery to send on another 70 pages of my medical records. (Bet they’re glad they requested another 6 months worth now eh!)

The work on my flat to try to fix the dry rot is now scheduled for January. I have to move out with my kitties so the work can happen. I’m hoping to go and stay in a cottage far away with a good friend, a crate of wine and a log fire. I truly need that distance from reality right now. The past 12 months of my life have been far too real for my liking and I stick by what I wailed at my brother a few weeks ago – I can’t take any more. I cried a lot today. Now, I know that this time of year, in general, is pretty difficult for me. All the good cheer and festive fun, just makes me feel more depressed. Several aspects to that. First, it just brings into stark contrast the total lack of fun in my life right now. Secondly, I’ve never been a fan of this season. Thirdly, it’s all just a bit too wild and raucous for me in my middle-age! I really am turning into a pretty grumpy old(er) lady. I can’t really tell you when all these seasonal feelings started. I can’t really remember the last time in adulthood at least that I truly, out-and-out, thoroughly enjoyed Christmas. It just seems like the same stress as for the rest of the year, except its much more expensive and failure to provide the perfect present is simply not an option.

Due to unfortunate circumstances, Christmas Day, this year, was held on Boxing Day. That just served to prolong my agony. I just want it all to be over. In fact, I want it to be February. By then, the silly season is over, I should know the true extent of my poverty and I can berate myself about the plans I made at 1.05am being utterly inadequate for my position. Then I can make new plans, that I won’t stick to and I can repeat the cycle all over again. I find myself wondering when I will get off the hamster wheel and take action, rather than just talk and plan for it!!

Rant over.

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.

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

Epilepsy and ???????

This is going to be a hard one to write I think. Although, the good thing is that, unlike with the last post, I’m actually not having to use voice recognition software. My sight has improved a little. What hasn’t changed, is that I have a second neurological disorder. In reality, I don’t know much more than I did when I last posted, but I need to write this down in order to get my feelings out and some of you have been with me on this journey from day one. If I can’t share it with you, then who….?

Epilepsy has been part of my life for nearly 30 years. I came to terms with having the disease (yes, I can call it a disease…Epilepsy and Words…), a long time ago. Of course, I still have bad days; days of “why me?”, but on the whole, I think I deal with it pretty well. The last couple of months, a new distraction has come my way. It turns out, final diagnosis pending, that I have a second neurological condition. Aren’t I the lucky one! Multiple MRIs, innumerable blood tests and antibody tests, medication galore, a stay in a hospital and the threat of a lumbar puncture later, I still don’t have a name for this new affliction. All I know for sure is that it’s degenerative, it’s cruel and it’s brutal. It tried to take my sight. It preyed on both my optic nerves and brought a degree of terror to my life that I haven’t felt for decades. My eyes aren’t the only recipients of this torture. Other parts of my nervous system have also been attacked. The severity of those attacks is still up for debate. Apparently, it’s “early days” and “too soon to be certain”. I’m still trying to get what’s left of my brain around that!

I’m still finding it all hard to take in. I can’t say I have fully come to terms with what’s going on. I think that’s mainly because I don’t really know what is going on! What I do know is this. I’m not the same person I was just 2 months ago. I can’t help but think I’ve been given a kind of challenge. My brain has thrown down a gauntlet; I have no real choice but to respond. How to reconcile the brain and the body? How to balance the head and the heart.? How to rise to the challenge, fight what is proving to be a bloody battle and not lose my essence? The past weeks have shown me some hard truths and tried to teach me some tough lessons. I say “tried to”, because I don’t think I have really come to terms with enough of this situation to truly be able to know what I’m being taught.

Epilepsy tried to teach me to be strong – but I’m not strong enough. Epilepsy tried to teach me resilience – but I’m not resilient enough. Epilepsy tried to teach my humility – but I’m not humble enough. Epilepsy tried to teach me to be brave – but I’m not brave enough. Epilepsy taught me so much, but it seems I have so much more to learn. I haven’t worked for 2 months, my sight isn’t good enough and another seizure floored me a month ago. Suffering a fit was no great surprise. A combination of stress and the, almost, total lack of sleep really made it a bit of a foregone conclusion! That being said, seizures always knock me for 6 and this one was no exception. I’d only got my chipped teeth fixed at the beginning of the year too!!

Anyway, as is always the case following a fit, reflection takes over at the top of my list of things to do. This time though, my mind was in overdrive anyway and I find that I haven’t been able to fully process the seizure and piece together the events that lead up to it. I’ve blogged before about how I need to be able to put together the timeline in order to start the process of acceptance that I need for me. So, while I know what the trigger for the fit was, I’ve lost time and I don’t know how to fill those hours. Maybe I’ll get to that later…

My jigsaw is featuring heavily in my thoughts at present. The corner pieces are still valid, 45 years worth of the big picture are in place, but what is next? Someone I trust said that you don’t have to have all the jigsaw pieces gathered to know how the picture is going to turn out. That’s very true. So, what do you do when you can see the pattern and don’t like what is forming? Well, you just pick new pieces and use those, right?!

Easy! Job done! haha – if only!! Picking up new pieces means forming new patterns and changing, what may well be, deep-rooted behaviours. For some folks, I dare say those changes may be easy, for others it may require them to embark on the toughest of journeys. It is true that some changes are easier to make than others and it’s also true that what is easy for one is another’s worst nightmare. That’s what makes us individuals. That’s what has been going through my mind. I look at the pieces already laid and I see patterns, I see a lot of habits that aren’t helpful to anyone least of all me. I don’t have all the bits, but I can predict what will happen if I don’t choose a new colour scheme for my brain!! So, it’s time to redecorate. Re-evaluate what is important and what is just window dressing and learn to adapt.

I’m removing toxic people from my life. If they don’t notice, then it proves they have no real place in my life anyway. I’m trying to care less about things of no real consequence; I’m trying to figure out what those are! I’m persuading myself to be open to opportunities and to stop letting fear (or laziness!) from making my life little.

None of us knows what will happen tomorrow, or indeed in the next hour. We can plan what we want to do and map out our days and hours by the minute if we want to, but we simply have no way of knowing what life is going to throw at us at any particular point. There is a saying I can’t quite remember how it goes but it’s along the lines of – “there is nothing more certain than death and nothing more uncertain than the hour”. In broader terms, death truly is the only real certainty in life, but when it will happen is anyone’s guess. So, this leaves the terms of life wide open really and it’s up to the individual how they choose to live it. Life throws spanners at us all the time. Some miss and some get stuck in the wheels, it is up to us to decide what we do about them.

I have achieved much in my 45 years. I’ve seen and experienced extraordinary delights, cultures, people and places. Adrenalin has coursed through my body and driven me to experience some of my wildest dreams. I want to stop saying that in the past tense. Epilepsy taught me so much; this new test will teach me so much more.

 

1

Dear brain…

Dear brain,

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

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

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

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

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

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