I’m so Good in Bed!


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demolition in acrylics by my daughter; copyrighted, please do not use or distribute without permission.

I have been under a wicked spell of utter exhaustion that refuses to let go. I have had to push myself very hard to do anything at all. I managed to pull a muscle in my right shoulder while changing position in bed, I’d already pulled a muscle in my side a few days earlier doing the same thing! Why is my body protesting so much now? Could this be kick back from the hydrotherapy? Surely not from such gentle exercise?

I have been feeling melancholy this week. Even my dreams have been maudlin, placing me back in situations I would rather not be in again and again, which makes all this sleeping even more unwanted. Then there’s the scary heart palpitations I get when I’m over tired!

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I did have some kitchen time, cooking soup with hubby. Together we got the dogs bathed, groomed and clipped their coats a bit to tidy them up, which didn’t help my shoulder and side very much but it needed done! We started the forms, I managed to read some more of my advance copy of “The Mirror” by Michael M. McConaughey in-between bouts of incessant napping! Not that his novel is sleep inducing! To the contrary.. it is gripping stuff but my hazy mind will let go of anything in favour of sleep it seems! I only managed one blog post, the recipe for the soup we made and I’ve been slowly answering comments a few at a time but have had little chance to check out what’s new on my reader.

It is such a damn depressing state to be in. I am not one for self pity, usually I can see the silver lining easily and cling to that but it’s been difficult to find. I used to sail through all this on an opiate sea, not caring about the time I was losing but now back in the world I feel so terribly trapped when these episodes show up. Still I am happier most of the time without such limiting levels of medication and I would never willingly go back onto that regimen again. I prefer a little more pain and a bit more annoyance than have years pass by without even realising!

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During those years I could spend days on end in bed, I could do the same now when fatigue really hits hard but it makes no difference to your energy levels if you sleep two or twenty hours. You have to make yourself get up each day, wash if you can, dress if you can but at the least get out of bed. Sure you may have no choice but to take naps but you are still making yourself part of the world, part of the lives of those around you. Do whatever you can while the energy is there because you can’t save it, you can’t store it so find something to use it on. You probably won’t finish what you start but that’s okay, you can come back to it or allow someone else to take over. The longer we stay in bed the weaker our bodies become, you may not feel like you have done much but the more little things we push ourselves to do the more strength we regain., though it will be a long time before we feel any physical difference, stick at it! Small steps still move us along our journey. For all chronic illness sufferers it’s the little things that can matter most, small things have big effects. We have to shift our expectations once we get relegated to the slow lane, our life is different but if we hold to our old expectations it will only bring us disappointment and sorrow. Life can still be marvellous, in fact living at a slower pace can bring us great mindfulness, we have an opportunity to find clarity, to live in the moment and find tremendous happiness from those little things.

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What I find most comforting is that I know I’m not “done” yet, in that I am not finished on my path and I am not complete in my being and every fall down is a chance to get back up again. When my energy is non-existent and all I can do is lie down if nothing else it affords me the time to look inward, think about certain aspects of who I am, who I am not and how I can try to improve life for myself and those around me. Always search for the positives, it’s an achievement just to have taken that step out of bed! Anything on top of that is brilliant! Please, don’t think little of any accomplishment, compared to nothing it’s a fantastic win. Don’t beat yourself up over “failings”, you have not failed. We can be our harshest critics! It’s okay to feel sad, it’s okay to cry and it’s okay if you didn’t get out of bed today! It’s okay if, like me, you lose your way once in a while, I always find the path again. It is no easy thing to come to terms with the loss of good health. I used to look at my life and see a demolition site and feel devastated but a demolition site is a great place to build! It just needs to be cleared of the debris left over and then it becomes a construction site! Every day you are “in” the world and not isolated in bed is a brick you place down in your new life build.

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I really should listen to my own advice more often!

I believe I’m on my way out of this rough patch. The fact that I’m writing is a big clue, my mind feels brighter, lighter and I’ve been awake for over three hours now! I’m somewhere in the middle between stone cold and on the boil, just heating up nicely, by tomorrow I could be simmering along! I do hope so! On Wednesday I’m attending the first meeting of a twelve week pain management group which I am so excited about! More about that later, for now “yes” to the sofa! I must take a nap before I fall asleep here!

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14 thoughts on “I’m so Good in Bed!

  1. What an amazing post you said so many things that hit the nail on the head. Sleep deprivation is used or was used as torture so it’s not surprising your suffering. Being medicated and tired doesn’t necessarily mean quality sleep and I’m sorry sad or maudlin dreams and thoughts are chasing you darn we need to bat those away!

    Your also very right I found being in bed so bad for me and if I’m not active the pain is worse. The Physio would nag and scare me about how I would be of I didn’t start moving and now I realise how true but baby steps and the trying is the important part isn’t it! I’m trying to accept my life now and not yearn for what was prior it’s certainly a learning curve xx

    • hi justine, it definatley feels like torture! the main problem is just not being comfortable enough to stay still for long, my back and hip hurts in my pc chair so i move to the sofa where my back and hip hurts in a different way then in bed my back, hip and leg hurts again differently. i can get a bit longer sleeping on the sofa with a multitude of pillow and cushions holding me softly in one position but still i need to move and stretch the pain out before settling somewhere else again. i spent years mostly in bed and have become so weak from it, now getting “proper” help and advice it is striving to get up every day that is the start of building up my body again. slow going but at least it’s something, baby steps.. unsteady, ungainly and one awkward step at a time lol! it really is a hard thing to accept such a different level of activity but for me i have to think well it could be worse.. i could have no support.. i could not be here at all and then it’s looking for those tenuous benefits, like having the extra time with my hubby and the time to finally get to grips with my past which allows me to look forward to a better future.

    • thank you, it went well. i will be posting about it asap. i have been out every day this week except today (thursday) which was my recovery day. i am out friday and saturday, sunday is hubby’s birthday, monday we have his parents up for dinner, tuesday is a rest day at the moment, wednesday is the pain management group meeting, thursday doctors, friday dentists, saturday recovery and sunday my son’s birthday and somewhere in that i have to find enough energy to complete these damn benefit forms, blue badge form, financial info form for my daughters uni and blog a little while catching some rest somewhere so i don’t get a kick back to send me flying back a few years! my pre fibro self would ahve taken it all in her stride easily.. my now self not so much!

      thanks for accepting the award and for posting about it so beautifully. i appreciate your kind compliments!

  2. So sorry you’re not feeling well. Been out of town and trying to catch up. I do think the mind and body are so interconnected. I know that when I tell painful stories about my past, that it hurts my body. That it can literally make me sick. Writing can be both cathartic, and also painful as we put ourselves back in the past and relive painful memories. I read the post about your brother, that must have been so difficult. As I get older, I am trying to make peace with my bad memories. It’s not always easy. I wish you true and lasting healing.

  3. Magnificent reading..wonderful way you express your self a help to so many, I know exactly where you are coming from..We have to learn to live with the pain and as you say…positive thinking and take that extra step.. to try to heal the pain , today I was thinking I have to talk to this pain in shoulder that has to operated on..I refuse to go thru the surgery and am trying to talk to my shoulder and when I try to do something with it…it sure is painful..along with all the other chronic pain I have..I will tell you more like you tell us.
    Thank you so much for your wonderful thoughts on my art..you are a sweet…Its 2.00 in the morning and I thought I would stop in to say thank and probably alot mistakes..but to sleepy..God Bless you..so for your pain…Love your blog..your title is fantastic..great humor and that is so necessary…helps so much..
    Sherri.

  4. Shelley, I have come to enjoy your work so much, and this is just another example of your talent. Though being a guy, and PIA, and evil minded, I had hoped this was going to be an “X” rated story of some sort. But that was quickly dashed and the true meaning came thundering out. Yes you are good in bed, but more importantly you understand the need to be out of it and act on that need. Just like you, I find when I am recovering from whatever put me down this time, that as my writing fires up so do my spirits. This post is uplifting on so many plains, thank you. Please take care, Bill

  5. I just want you to know I’m so glad to have found your blog! My best friend has fibro myalgia and as much as I try to understand what she’s going through I know I’m a million miles from ever knowing. Keep up your blog…it helps!

  6. This is just a great post and a very optimistic one too. We can still be optimistic while we are writing/thinking of the darker sides of life. The whole piece resonated deeply with me. I found myself nodding, saying yep! etc, etc. Our conditions may be different but some of the symptoms are the same and, of course, the emotions seem to mirror themselves with any chronic condition.

    Writing poetry has saved my life since my diagnosis; writing is such a good outlet for feelings and I seem to write about all of them!

    I hope your fatigue lessens somewhat. I have ben feeling very down with the MS fatigue since mid February when family came over from Ireland to stay for a week, which included a christening and a fifth birthday party. I have still not recovered and it will soon be mid-March. So I am finding my “new normals” and what I could handle before the MS became progressive is much different to how life is now. All of which brings me to that word “now”. It’s all any of us has and to have learned and carry on learning this precious concept is q gift.

    Thank you for this encouraging post; Im sure it will have helped anyone who read it to feel less alone.

  7. Great title. I like the commotion of your daughter’s painting.

    “When my energy is non-existent and all I can do is lie down if nothing else it affords me the time to look inward, think about certain aspects of who I am, who I am not and how I can try to improve life for myself and those around me.”

    Brilliant statement! I am getting better at remembering, when I am down, to make a list of what I want to do, so when I get a little energy, I can focus on what is important, instead of trying to quickly figure that out before the energy is gone. I am also getting a lot of practice learning how to make the most of down times: for reflection, meditation, and insights.

    I am glad you were up enough to put these words down. What a busy week!!! I hope all went well.

    I love your ending quote: I find procrastination incredibly valuable.

  8. I so know how you feel and hope you are able to move beyond this soon. I know how debilitating it is to feel like you’re just wasting away to nothing while the rest of the world is so engaged with life. … Finally my energies are returning to me but I know I will always need to be mindful about how much I push myself. In my case I’m dealing with adrenal fatigue. When the body says take the day off I have no choice but to obey. … Hang in there. Dorothy 🙂

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