“Ten men waiting for me at the door? Send one of them home, I’m tired.” – Mae West

October 6, 2012 § 18 Comments

Me, sleeping in my afternoon sleep lair, aka the seetee

When my daughter was born and until she was about two and a half, she hardly slept. Well, she did, but it felt like she hardly slept. She definitely woke at least four times a night. I was exhausted all the time, it was horrific and I was desperate for rest.

I am now experiencing my second bout of extreme exhaustion, this time through illness and not children. Since before I was diagnosed, probably around May of this year, I’ve been experiencing, extreme, all encompassing tiredness. At one point I was sleeping between 14-18 hours a day. The tiredness has decreased with my treatment for dermatomyositis, but it hasn’t abated: And this week, I’ve been particularly bad.

“Oh, but you’ve got enough energy to write a blog post, etc.”. I hear you say. True, I am able to sit and slowly type, but only after a long afternoon sleep. I suppose at least I can have an afternoon sleep, you can’t, often with small children around.

My neurologist said to me the other week when I saw him, that I must not do too much, because the exhaustion you will feel will set you back. He’s right, I’ve been a fool and done way too much this week. I have been working (from home, part time, but still it’s very tiring). I spent time with my daughter and grandchildren (such wonderful, happy times, but small children are so tiring) and I had friends stay over for a few nights (good friends who did my garden and entertained me – I did ask them to wear clown suits too and sing, but they refused, tch (selfish friends).

The exhaustion you get with diseases like this is all encompassing, I’ve never experienced an intense tiredness like it – it is actually worse than the tiredness of motherhood.

I, like many others, try to fight it. I am sick and tired of having this disease control my movements, so I try to pretend to myself and others Im not so bad and then I crash, literally, its like a sudden crash where you feel physically sick with the tiredness and HAVE to lie down and sleep.

I’m still sleeping about an hour during the day at the best of times anyway, but when the crash comes, wooo, it’s sleep as much as possible.

So, carers and friends and family of the ‘diseased’, if one of us sick people say we are tired and aren’t up to, what must seem to you like the most trivial of things, such as a phone call, it’s not that we don’t care, or are being flippant about our friendship, etc. it’s because we are really, really unable to do it.

(Well unless i just can’t be arsed and you’re getting on my nerves this week – JOKING!!!!) I LOVE you all!

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§ 18 Responses to “Ten men waiting for me at the door? Send one of them home, I’m tired.” – Mae West

  • Nichole Smith says:

    I’d love to share this if you don’t mind. It’s exactly how I feel. My husband will just look at me and say “you need a nap, GO!”. It’s like you have to sleep right then, so exhausted..

    On another note, you have grandchildren?? For the longest time I thought you were in your 30’s!! No lie!!

    • susiemorrow says:

      Course you an share it! The tiredness is hard to understand it so engulfs you. I had a nice sleep this morning, I love those sleeps, if I don’t get them I am sick with the tiredness.

      Yes grandchildren, I KNOW! I was a very young mother 😉 Im a cyber granny. Im actually in my 40s, so not much older than 30s, but it’s a MUCH better era, my god is it! I seemed to be permanently depressed in my 30s, then suddenly I snapped out of it, or learnt to control it better maybe?

      • Nichole Smith says:

        You are a young granny! Well maybe I can look forward to the 40’s if they work for you! Hope you have a good weekend ❤

  • Sleep is such good medicine! Try to think of this not as the disease having control over you, but as you being in charge of your own body and its needs. The disease is in remission so you have won that battle. Now it’s a matter a taking great care of this precious body.
    Pamper yourself whenever you can. If you love candles, light them. If you love tea (the drinking kind) or some special juice, have it on hand. I have discovered audio books. There is a huge number of wonderful audio books available now and it is such a relaxing thing to let someone tell you the story!
    Let people serve you. Let yourself be taken care of and know that it is a noble thing and not a selfish thing! You’ve worked hard for such a long time. Now it’s your turn to take it easy

    • susiemorrow says:

      Kim! You read my mind, I’ve been using audio books to help me relax, I sort of feel like I’m cheating though, but my eyes and brain are too tired to read a book for more than a few minutes at a time. You are such a love, you know that don’t you. (heart here it never works for me) >3

  • pansurvivor says:

    I’m a believer in naps. So is my rheumy. He says if you don’t sleep you don’t heal so sleep away. Lately, like you, I’ve been extremely exhausted for many reasons. Lack of sleep (I keep waking up in pain), stress, worry, doing too much and it’s caught up with me. I slept 3 hours during the day yesterday. Usually I only lie down for an hour to get my second wind. I haven’t touched my blog either, something which I’m going to try to tackle here in a day or two, hopefully.

    • susiemorrow says:

      Doing a blog can be hard work when you are ill and tired all the time, it takes motivation to keep it up, I know I struggle a lot too but I have Suz to share it with so that helps massively. Hope you can get on top of the pain, its awful. Im in a bit of an almost pain free part of the disease (almost, never quite pain free is it). I use heat packs a lot which are marvellous (I must do a post on the wonders of heat packs at some point) xx

  • jillinois says:

    I can SO relate to other people just not getting it….we might look fine, but how we feel isn’t cooperating. I am often asked why I don’t do some things….and how I wish I could. I’ve got 3 medical appointments this week, and am exhausted just getting to those. ❤ Hang in there.

    • susiemorrow says:

      The tiredness is just so awful and you feel bad because it sounds like you’re just whining, but it engulfs you doesn’t it Jill. I can totally understand how 3 medical appointments in a week exhausts you, I feel the same. I get quite stressed when i have a week like that, because I know that by the end of it I’ll feel really bad.

      • jillinois says:

        I know- and back in my ‘real’ life before all of this, I was working 12-16 hour shifts as an RN, and while it was ‘normal’ to be tired, it wasn’t THIS kind of tired- like it hurts to make a sandwich.

        I feel so misunderstood by anybody who knows me- like I’m just sitting here for the heck of it. I’d LOVE to be working ! But I’m not even reliable enough to get in the shower every day! If I have to use microwaveable washcloths now and then, that’s just the way it is.

        I hear ya, Susie. It’s hard, and feels so alone because ‘regular’ people just don’t understand.

      • susiemorrow says:

        Oh thats such a good expression, ‘normal tired’ that’s the difference isn’t it, this doesn’t feel normal, it feel wrong.

  • jillinois says:

    Yeah, there’s a big difference. It’s hard to explain it to people who don’t know that feeling. It’s definitely not ‘regular’ tired- like everyone feels sometimes- this is abnormal all of the time. ❤

  • jillinois says:

    Yeah… I remember working with stroke and head injury patients- we were always watching them for aspiration..and when I had some problems with TIAs, my swallowing would get really weird. They taught me to tip my head forward to swallow, to close off as much of the windpipe as possible.

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