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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.

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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.