4

Tired?

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

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

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

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

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

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

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

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

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

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

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

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

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

 

2

Dear Brain…prt2…

The last time I wrote an open letter to you, brain, I was on my knees and begging for answers. I sure as shit did not like the response.

I’m back again. Well, not that I really left. We’re intrinsically linked. I can’t live without you, but I do find myself wondering if you can live without me. I’m finding it hard to keep up with you, you see. You just never stop. You never give me a moment’s peace. That’s why I’m writing this at 11pm on a Tuesday night. The voices just won’t shut up!

Oh, not those kinds of voices. No, I’m not quite there yet. But someone rabbits incessantly all day, all night. It can only be you, brain. I need to find a name for you. I can think of several that are apt, but none of them look good in print. It seems bizarre talking to you in this way. Because I’m not really talking to you, I’m talking to myself. You are me and I am you. Could drive a person insane trying to figure that one out. But does make me wonder how I can shut myself up…

My brain. Lobelia.

Lobelia presents me with many challenges. She particularly likes to ask me difficult questions in the wee small hours. She knows I need to sleep, but apparently she doesn’t care. Fatigue leads to problems for my epilepsy. Lobelia knows this. Lobelia has known this since she short-circuited when I was 15. Please don’t get wound up on the gender identification I’ve placed on Lobelia. For the sake of clarity – I am woman! Lobelia is going to be a woman too, whether she bloody well likes it or not. Anyway, I digress. Lobelia was triggered into electrical action when I was 15. It’s amazing what a combination of a faulty gene and a skiing trip can do! Maybe Lobelia blames my physical body (which she controls) for this. I don’t know that answer. She only seems to like asking questions at inopportune moments (hours); she’s not really one for giving answers.

Anyway, Lobelia knows that fatigue and epilepsy are not great bed-fellows. One of them really should take the spare room. But still, she insists on making them co-habit. And to make things just that little more interesting, she introduced MS into the mix. MS is like the mother-in-law from hell who moves in, just as your already fractious relationship is teetering on the brink. Lobelia has got a really sick sense of humour. If I am her and she is me, then how come we can’t get along?

Lobelia is average weight – around 3lbs. She is about 15cms long. And she lives the phrase – “good things come in small packages…and so does poison”. She allows me to function on a day-to-day basis, but the price I pay for that is heavy. She leaves me exhausted, but won’t let me sleep. She relies on drugs to soften the hard edges of the living arrangements she created herself; but not the soporific type. She asks me questions that have no answers; she drags up my history and replays it; she loves to play the “what if…” game. She tells me just how tired I am and then sinks me into a depression that is immeasurable. She uses that state to get more drugs. Well, we call them medications. They’re all legal and above-board. Even though one of them gets delivered to my house in a grey package and it always seems a little weird to have that happen. I find myself looking around furtively to see if anyone is witnessing the transaction. I’m glad I don’t live on a street corner!

Is this how it’s going to be for the rest of my days? Lobelia knows that she will live forever. Actually, we all live forever. Forever, can only be determined by an individual. Your forever, isn’t my forever. Has anyone ever promised to love you forever, only to leave you 5 years later? I rest my case. Cynical? Perhaps. Best ask Lobelia. Not that she’ll give you any answers.

Dear Lobelia. I am your physical shell. I hold in one place all of your nerves. I know you’re having issues keeping hold of the myelin sheath around those nerves. I know that according to Pakkenberg et al. the length of myelinated nerve fibres in you Lobelia = 150,000-180,000 km. That is a helluva lot of fibres. I know you started with around 20 billion neocortical neurons and I know you lose them at a rate of around 1 per second. I don’t know how quickly you can replace them. I know you pose these questions to me late at night. You throw them in there along with the frivolous musings and the rehashing of conversations I had 20 years ago that could have gone better. I just don’t have the capacity to think about these things anymore. There is no room. You can remember the random facts from a different life, but I can’t remember the birthday of my best friend. You want to torment me with the failings of a previous inning, but I can’t continue to function at a high enough level to keep the current one successful. Lobelia giveth and Lobelia taketh away.

Lobelia. We need to reimagine how this is going to go. What could it be like? What say you let me sleep for a few hours? Hold your questions and accusations for a dedicated time slot during the day? Will that work for you? I know, I know, I’m asking the question and you won’t want to answer. Think about though, please. My sanity depends on it.

What Lobelia doesn’t know is…I’ve donated her to research when my forever comes to a close. Hehehehe.

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

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

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.