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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Life on a Dead-End Street

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 27, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    Jody Smith considers how her life had become one of necessary isolation, and how a chance encounter with new neighbours and the possibility of having them in her home, led to feelings of fear and insecurity. Looking back she reflects on how these concerns have slowly improved and how the occasional visitor is now more welcome...

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    I live in a cul-de-sac that contains half a dozen houses. And, as I think about it, living on a cul-de-sac - or dead-end street - strikes my twisted sense of humour as being a great, though unintended, picture for living with ME/CFS.

    Its after dark, and through my living room window, I see the headlights of any cars driving in or out. There's only one street light on this short street, so headlights are very noticeable against the black background.

    A couple of houses launch and receive vehicles all day long -- at least according to my ME/CFS standards. One house in particular has plenty of traffic, as members of the family are carried to and from activities every day.

    This house is across the street from me, and its' traffic is a reminder of what a normal busy household is like. It prompts feelings of yearning and loss in me.

    It's not that I want to be that busy, I know I wouldn't be able to maintain such a pace for more than a couple of days before being relegated to my bed. And it's not that I resent their apparent happiness and constant movement. But I do envy it. And it does make me sad to see it from the vantage point of my quiet living room.

    I remember years when my household was crazy busy, when our kids were coming and going day and night, when my husband and I would round the crew up and take off to church, to grandma's house, to homeschool events where we would lead the proceedings.

    I remember when our friends and our kids' friends would show up regularly, sometimes by appointment, and sometimes they'd just drop in. And we would be at times happy to see them, other times wishing they'd chosen a different time because we were busy. But always we felt more than adequate to these visits.

    The house might not be tidy with five kids running in all directions, and we lived with plenty of chaos. But the fact of someone showing up at the door was a normal part of life and we were happy to roll with it.

    Last year I was reminded of just how much this had vanished from my life.

    We had become owners and caretakers of a rescued three-legged dog from the Humane Society. She had briefly been our adult son's dog, but he'd found that he was not able to provide the constant companionship this anxious traumatized dog needed. And so Cleo came to live with us.

    With two of us living with ME/CFS, and one who had Fibromyalgia, there was always at least one of us at home at any given time. The dearth of visitors also helped her to eventually become more relaxed. Surprises just didn't happen very often. Our days had a sameness that sometimes drove me out of my mind, but it worked really well for Cleo.

    I didn't know how to take care of a dog, or how to get Cleo to listen to me, and she didn't seem to have much practice at listening to anyone. She was a good-sized dog, probably a Lab and German Shepherd mix, so we couldn't exactly pick her up and move her when she didn't respond.

    So when she went outside one day and trotted over to the neighour's house to bark at them in their yard and ignored my "commands" to come home, I was mortified, embarrassed and, I realized later, terrified.
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    Cleo with my son, Jesse.
    I knew that in my past, I would have been more than equal to the situation. I would have laughed, and my neighbours would have commiserated. They were dog lovers so there should have been no problem. But these were new neighbours, and I had had no recent experience with meeting anyone this close to home.

    I was proficient online where most of my life has been happening for the past four years, but the very thought of a new neighbour - and one that might possibly pop over to my house - put me into a deep sweat.

    I felt certain that they were pleasant, friendly people and not the type to come in and look for flaws, and yet I was afraid that the holes in my life would be all too obvious, and that these normal people would be able to sniff out the fact that we had pieces missing.

    Suddenly, I was in this state of irrational anxiety. Would my home be deemed good enough (whatever that meant)? Would they feel comfortable here? Would I remember what to do with a guest? Would I feel ashamed of my cluttered house - that my carpets hadn't been vacuumed in months because nobody had either the energy or the healthy muscles to clean them? Would the messy kitchen turn them off? Should it? In short - would they want to back out and steer clear of this house of infirmity?

    These concerns were so different compared to when I used to have moms and home-schooled kids over to my place for hot dogs every week, and held meetings and get-togethers in my living room.

    The sameness of my small life has suited me in many ways for these many years. I have needed it, needed to avoid stress, avoid surprises, avoid exertion. I had gotten used to it. But on that day, thoughts about my new neighbours, really unearthed this fear in me; I got a clearer look at just how small and uneventful my world was. And it broke my heart.

    Fortunately I did not stay in that state. As the rude shock wore off, and as I spent time thinking about this state of affairs over the following weeks and months, I found that I was more inclined to move the clutter off my tables, and to keep dishes more under control.

    I would remind myself that if someone dropped by I would be more at ease if the place looked ready for such events. I didn't have company, but I used the thought that I might, to help keep the household more like I used to back in the days before I become ill.

    A year later, for no specific reason I can think of, the occasional visitor has been showing up here, for the first time in about five years or more. One is a friend of mine, another is my husband's friend. The earlier revelation with our new neighbours had started my rusted cogs moving, and by the time we did have drop-ins I had moved from the cluttered hermit-hood to a status quo that was more like how I used to live.

    I still miss the old barrel-of-monkeys level of activity in my home that we had before ME/CFS. I still would not be able to maintain such a pace if it were to hit me again. But one more piece of my old self has been slowly re-surfacing, as I continue to try to reconstruct my decimated life.

    I am again surprised by how slow and how enormous the rebuilding and reclaiming process can be. I shouldn't be surprised, because I have been experiencing such tiny resurgences for many years now. But even though it's slow, and the progress infinitesimal, I am continuing to crawl, with the speed of a glacier but in the right direction at least, to a state that someday may feel something akin to normal once again.

    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

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  2. xchocoholic

    xchocoholic Senior Member

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    Great article Jody. You always capture the human side of being a pwc.

    I can relate to finding your way back into a "normal" world we never knew existed and most people take for granted.

    Tc ... x
     
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  3. Firestormm

    Firestormm Guest

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    @Jody Do you still have Cleo? If so do you have a picture you might share? I'd love to have had the time to ask for one for the article.

    I think that sometimes dogs are terrific for getting us out of ourselves and I well remember times when I really didn't want to 'engage' with another human-being outside of my family: and yet the mutt would shove his nose in a crotch and you had to make conversation - even if only to laugh and apologise :)

    They can be great as well for when you are feeling poorly and can't get out - so long as you have help to ensure they are well taken care of.

    They can become real companions. But they do need exercise and that too can provide an opportunity to interact if you are able of course.

    I think the emotions you describe can be related to by everyone reading this forum - and perhaps it is true of those who are not ill? But maybe to a lesser extent or that they experience them but the emotions have less impact? I don't know...

    Made me laugh when you described how you have tried to overcome this feeling about visitors, and I am exactly the same since returning to a life on my own, in my own home.

    Whilst I might be more surrounded by mess if I didn't expect visitors, I know that Mum and if not her, then Dad, or the OT, will be in every other day to check if I am all right.

    And so I do my best to keep the place as tidy as possible - even to the extent that I 'panic' prior to their arrival and have a bit of a 'mad-dash' about the place.

    It's good. Keeps me on my toes - do to speak - and it means that 'housework' has become once more a key part of my weekly and daily activity.

    Indeed, now I am more concerned with staying on top of the washing-up than I am in getting an article published before 9am :)

    Of course I have also learned - the hard way - then when I can't maintain this semblance of order, and I haven't been able to push the hoover about, or clean the bathroom as much as I would like: I can cut corners and do a bare minimum. Or if I have been poorly for longer then the 'mess' doesn't bother me as much as it used to and I feel no guilt!

    Yeah I know. I am a bloke. What can I say? I am weird like that :)
     
  4. Jody

    Jody Senior Member

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    Thanks xchocoholic,

    It's amazing how big some of the "little" things of life are, and how much work it can take to retrieve them.
     
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  5. Jody

    Jody Senior Member

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    Firestormm,

    I don't think it's just the blokes who are like this. Even before I was sick, my tendency was to not notice clutter and dirty dishes, etc. and then when I'd know someone was coming over (and sometimes that was just knowing my husband would be home soon from work) I would only then "see" the mess. Like looking through someone else's eyes, perhaps. Then I'd get up and take care of some things. But it wasn't because it bothered me particularly. I didn't want other people to see it. :rolleyes:

    When I used to have people over a couple of times a week, it helped me to keep the house in a semblance of cleanliness. When that all disappeared, so did my carefully crafted (non) housekeeping habits. But I have always been kind of that way when it comes to housecleaning.:)

    We do still have Cleo and as it happens I do have photos. Quite a few, so let me know what type you'd like to see.

    I just had an article published about her this month in a magazine called Animal Wellness. It is online here http://www.animalwellnessmagazine.com/articles/whitney-wins-my-heart/ and is also in their magazine, my complimentary free copy with her article in it came in the mail last week so she is a celebrity now. :cool:

    Her name in the article is Whitney, which was the name the folks at the Humane Society had given her (some explanation in the article about that). We later changed her name to one we felt fit her better, and she has been Cleo ever since.
     
    Last edited: Jan 27, 2014
  6. taniaaust1

    taniaaust1 Senior Member

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    Im the opposite.. wanting/wishing my house was cleaner seeing I have ME/CFS.. there is more movitation (in my head) for it to be seeing Im stuck here nearly all the time. Having poor health also I find motivates me to want my house very clean eg too much dust and I get worst Asthma. It seems the slightest thing affects my health.

    But yeah.. I go into fear too at times if someone wants to come over. I have seen people be discusted in my house (sadly something I cant do anything about. I cant keep it cleaner then I do without worst reprecussions for me). My nanna came over once last year and I truely think she will never do so again (she was so shocked with the mess here). That made me feel extremely sad.

    I find that too. I take in traumatised cats (only one at a time) from cat rescue org and help them adapt to people (me) and being a pet so they can have more chance of ending up getting a good home. My house like most who have ME/CFS is extremely quiet with every things slow going here. Perfect to take on an abused pet.
     
  7. Jody

    Jody Senior Member

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    taniaaust1,

    My natural tendency is to be a messy person. But I found at some point that being in an environment that was less cluttered was easier on my nervous system, and brought more peace to me. Unfortunately my ability to keep my home that way was too limited most of the time. I would spend a few minutes cleaning up little bits here and there, e.g., tables with stuff all over them, or the mess in the bottom of my closet. I'd just do a bit and then rest. The next day if I was doing okay, I'd spend a couple more minutes. Tiny advances, over long stretches brought a bit of mental and visual rest.

    Our traumatized dog has benefitted a lot from the quiet. And I was surprised to find that her presence, though it brought more work was comforting to all of us. She has been great for my son Jesse who has ME/CFS, she is a companion who requires little, and adores him just for being there. We have all benefitted from that.
     
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  8. Jody

    Jody Senior Member

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    Thanks Firestormm for adding the photo of my son Jesse, who has ME/CFS, with Cleo to my article. They are great friends.
     
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  9. Misfit Toy

    Misfit Toy Senior Member

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    I am super duper clean. I vacuum everyday. I do dishes everyday. I think it's this feeling of things being out of control, so cleaning gives me some sort of semblance. For me, it's about me, not the neighbors.....BUT, I put makeup on everyday (almost) for the people around me! They don't need to see me in tatters. I don't want them seeing me in shambles.

    Thank you, Jody, yet again. Would love to have a dog.
     
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  10. Jody

    Jody Senior Member

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    Misfit Toy,

    I'd never had a dog before. We only have this one because our son was in a jam, he'd adopted her and found he couldn't care for her intense needs. We took her out of a sense of duty to him and to this poor dog, but I didn't expect to like it. Within a few days though I was discovering just how different dogs are from indifferent cats.:)

    Cleo is proving to be one of the best obligations I've had the good fortune to incur.:)
     

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