So what do I do?

“Tired”. I am so fed up of saying that word! It is as though “tired” has taken over my life, but what else can you say, when you husband is looking at you with deep concern, and asking yet again, “Are you OK?” “I’m fine, I’m just tired”. I know it’s not the right word, but saying “I’m deeply fatigued” somehow seems like a rather large mouthful, and when you are this “tired”, anything that takes less thought and less action, is welcome. Sometimes I wish that he didn’t keep asking me, but then, if he didn’t, I’d wonder if he was OK, because he is always asking me, and I love him for it. But none of that changes one fact, I’m fed up having to say, “I’m Tired”.

On a normal night, I sleep right through eleven and half hours, after which, I’m tired, and that is how I spend my day, locked in a cycle of varying levels of tired. At my worst, I’m fighting to keep my eyes open through the hours that I am supposed to be busy. I tweet, I write, I organise and I play cards, determined to stay awake and determined to not give into returning to my bed. For the last couple of years, I have spent each day in exactly the same way, as if I give in, I fear that all I will ever do is sleep. Determined to have a life of some sort, as otherwise, what life would I have? Between my nights and my naps, I already spend more than half of every day asleep, how much more can I lose to it, and still class myself as having a life? How much more before my life becomes nothing but sleeping, eating and sleeping again?

Seriously, I have lately been considering lengthening my night sleep where possible, that is the time I have before the alarm clock demands I’m awake. I could with ease, have four days out of seven, where I don’t get up until 10am instead of 8:30am. The other three, well, I have to be up due to the time that the district nurses arrive, but there are those other four days, where that alarm change would at least give me the option to sleep on if, I want or needed to. I doubt that to begin with, I will sleep through many of them, as habit is a very strong driving force and I’ve had years of habit-forming alarm clocks. There are two reasons that I haven’t done this sooner, firstly Adam, yes I know that might sound like an odd one, but he has a bad habit of sleeping past his alarm. If I am up at 8:30, well yes he is late for work, but only by minutes, not hours. The second, I’m scared that I might sleep right the way through to 10am, and that really does scare me. If I can sleep through to 10am, how long might I sleep, without the alarm set at all?

Tired is a mine field! A very big and very scary minefield, that knows exactly how to piss me off! I fear it because somewhere inside me, there is this voice saying you might need to be asleep for far more time every day than you already are. That being “tired” isn’t just another annoying symptom of my health, but one that is slowly taking over my life, what little of it is left. How have I gone from someone who slept between 4 and 6 hours a night, never rested at all during the day and when possible, never even sat still, to someone who hardly moves and simply wants to sleep constantly? Even worse, I’ve changed into someone who sometimes, quite honestly doesn’t want to even fight it any longer.

I thought that when we bought my electric chair, that it would give me more energy, it hasn’t. It’s great, don’t get me wrong. There is now a joy in moving around the house that has been missing for a long while, and I can actually now do things at speed, but despite no longer having to drag myself around by my arms, but the fatigue hasn’t moved at all. I’m still tired, so damn tired. Another great idea, that hasn’t turned out the way that I planned.

When I agreed it was time to have a carer to help me, I thought then that this tiredness would lift, it hasn’t. Laura is great, she does everything that I need, but the help she gives me, means I all too often, have to work as well myself. I worked out what we could afford, and fitted in the help I needed to fit what we could afford, not to what I really needed. If I am being honest, I could do with having her here for an hour five days a week, not half an hour three times a week, plus of course, my showers on top. How can it be right that our health always comes down to what we can afford, rather than what we need? How can it be right that I am always this tired?

Before anyone says it, yes, I know there’s a drug that keeps you awake. I tried them years ago as I was struggling at the time because of work. Adam said that they were basically a legal version of speed and that they gave those meds to fighter pilots to keep them awake. Well, I’m glad I wasn’t a fighter pilot, as, within months, I was once more struggling with work. I ditched them and didn’t feel any change what so ever. No matter what I do, there seems to be only one option, to try and get more sleep, I just fear that if I do, I’m just going to crave even more. So what do you do, when “tired” has taken over your life?

 

Please read my blog from 2 years ago today – 10/12/2014 – Step eight

I found myself staring at the globe on the top of my blog, I haven’t looked at it for several weeks, I seem to go through phases of being transfixed by it, then ignoring it. When I was checking the spread of the little dots, I suddenly had this mad idea about getting a dot in every country on……

17 thoughts on “So what do I do?

  1. It is seriously for this very reason that I really appreciate those really hot Melbourne days.(40 degree’s)stay with me! Because those are the days I can respond to people I’m hot and tired…….while I’m a big fan of sleeping when I’m tired I know it creates a bad habit that’s hard to fix. Whatever works for you however in the meantime you might like to consider to stop giving yourself such a hard time about it. It’s likely not helping.

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  2. I wish with all my heart ❤️ I could do something for you.. I do know from experience the more I slept the more I wanted to 😴.. I was so depressed that my bed was all I needed.. I found it hard to sit up, to visit my family.. it’s like I had no energy and yet I slept like you and I was still tired.. once I realize that I had to live for me , for my grandchildren.. it didn’t get easier but I am fighting everyday like you.. try your best not to sleep longer.. I know your situation is different from mine.. try to stay busy.. and speak these words I’m not tired .. I am a ball 🏀 of energy.. Praying for you my friend..

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    • I think our positions are very different as I like you have lots of reasons to keep going. I don’t lack inspiration just energy and that is totally in line with my condition. I’ve been fighting for a long time to just stay awake, but now, it’s getting too much. No matter how much I want to do something or even see something, tiredness destroys it. I couldn’t even finish my dinner the other day, the need to sleep was so intense, that that was what I landed up doing. I throw my food out and I went to bed. I’m just hoping that sleeping for that bit longer into the morning, might mean that on those days, I don’t need to nap, that I can have a day, one without an unneeded interruption.😌💤

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      • I hope so.. try it and see and I pray it works.. I wish there was some magic pill for you to give you back your life.. may God bless you..

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      • I have been so tempted to do that often, but I fear I will sleep so long, that I won’t be able to sleep the next night. The result could totally screw me up for days, just trying to get back into my all so important routine. 🙂

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  3. I, too, wish there was more I could do than send you – hopefully – kind words. I’ve felt that overwhelming tiredness & inability to get out of bed, but for different reasons & definitely not to the same extremes as you. However, I know how frustrating it can be… to want to get up & do things, but completely lack the energy & not be able to do anything about it. With my severe depression & chronic pain, I often feel as though I’m weighing my fiancée down because unlike most people in their early 30’s, I’m unable to work, was unable to even finish my college degree though I’ve always excelled in my studies, I’m unable to even do many of the household chores… like vacuuming, sweeping, even dishes wear me out… yet she works 60-80hrs/wk to support us, I’m unable to go & have a night out dancing. It’s overwhelming, and I can only imagine your predicament. I admire how much you continue doing all you can to push through & keep your routine best you can, that I’m not itself is a huge step. Take care.

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    • I too understand where you are in life as I too suffered from depression many years ago. I know what it is like to feel you can do nothing, but life is demanding so much more than you have within you. It is a dragging and debilitating place to be.

      Right now I am caught in what to others might appear a similar position, but there is a huge difference. I don’t feel as though I am being dragged down by it, just overwhelmed by that need to sleep. I feel like that child on Christmas night who is determined to stay up and see Santa, then falls asleep in the middle of dinner, literally in the middle of their dinner. When you can’t keep your eyes open, even to do those things you enjoy, life becomes this constant cycle of fighting that next wave only to be hit harder by the one you know will follow just minutes behind.

      Neither your place, nor mine is a good place to be, I just hope we both find an answer.

      Take care 🙂

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      • I hope we both do too. Ty for the kind message. I’ve been in that predicament similarly due to my chronic pain, pelvic/ovarian & GI issues where I’ve been completely debilitated by the pain & fatigue they caused bc of everything seemingly “flaring” all at once that regardless how hard I tried – or needed to at some points (due to appts & other obligations) – there was no keeping me awake no matter how hard I tried. Both are frustrating places to be. I try hard as I can now to not let it get the best of me, but sometimes that too is a challenge. The best I, you can do, is hold onto hope.

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  4. Hello Pam,Once again I wonder if we might somehow be twins.! I also got tired of saying I’m just tired when Mike did the gazing bit.I think they just need a bit of reassurance,now because I was tired of saying I’m tired I say Iam ok if you are.It seemed to work.I have a pile of new books demanding my attention so sending love and hope you have a good day tomorrow.Nx

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  5. THAT KIND OF “TIRED”; FEW OF US UNDERSTAND.NO AMOUNT OF SLEEP OR A PILL OR ANYTHING CAN FIX. BEING SICK. IS A FULL- TIME ; NEVER ENDING FIGHT,THAT WE LOSE ANYWAY.WHEN I’M NOT CRYING,I’M TRYING TO STAY AWAKE, JUST SO I CAN START ALL OVER AGAIN. STAY STRONG PAMELA. YOU ARE IN MY MIND/HEART EVERY DAY.WISH I COULD GIVE YOU A BIG HUG. “LIFE REALLY IS A BITCH”.

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