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.

4 thoughts on “Sick and tired of being tired!

  1. MS definitely causes a lot of fatigue and I feel like others don’t understand. I feel exhausted most of the time but then have a hard time sleeping. Does not make much sense, I know! I think most of my exhaustion is from the flare up that is hopefully ending soon, but we will see!
    I really enjoyed reading this post and related to so much of it! I hope you are having a good day! Take care!!!

    Liked by 1 person

    • Thank you so much for your comment Alyssa. It’s so good to know I’m not the only one too tired to sleep! I truly hope your flare up leaves you soon. Take care 😊

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      • Thank you Kirsty! It is so weird to say we are too tired to sleep. I hope you are able to get some rest soon!!! This annoying flare up should be near the end. I just finished an insane amount of steroids, which does not help with the sleep issue. I really hope you are having a good day! I am looking forward to getting to know you more. Maybe we can come up with some idea to sleep when we are too tired:)!

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  2. Pingback: Sleep, Einaudi & escaping the prison… | Musings on Epilepsy, MS & Life...

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