Tuesday, 5 February 2013

Debbie Downer Post


I don't do many downer posts. Mostly because they annoy me. When I go back and read them weeks later I want to grab myself by the shoulders and yell "Harden up, Princess!" Because at that point I'm over it. Whatever has happened, whatever event has led me to that place, is done and dusted. I have a group of unpublished posts in my draft folder where I have spilled my incoherent emotional baggage. Writing helps me make it through, but only a few make it onto here. And those that do? I often think of them as the blogging version of drunk posting. When my emotions are raw my judgement is a little off. What should probably remain out of the public domain ends up splashed across the screen for all to read. In my more sanguine moments I know that life is hard enough without subjecting anyone else to my moaning and self pity. Will this one make onto the blog or not? I don't know. We'll see. It depends on how much of a "screw it all" mode I am in by the end of my purge.

I am over being sick at the moment. I am tired of the unrelenting nature of chronic illness. I am tired of the fact that at the moment I am not getting a break. I am tired that none of my usual tricks, honed over years of careful trial and error, no longer seem to work. Usually, I have a bad patch, followed by a less bad patch, followed by the inevitable next bad patch, and so on. It's a pattern I've become used to over the past seven years. There is comfort in predictability. Those little lulls make it bearable. They give you breathing space. A time to sit back and collect yourself. To find equilibrium once more, so you can keep on keeping on. But my lull is long overdue and I'm feeling stretched beyond my meagre abilities.

There is only so much you can take before you start to fall apart. Before the cracks start to appear. Before others start to see the cracks, and it gets harder and harder to keep it all together.

I tend to retreat at this point. I move to the periphery of life, only engaging sporadically and superficially. It's a matter of survival. When you're clinging on by your fingernails, the slightest extra bit of stimuli is too much. Silence and alone time are life-sustaining. More than that, they are sanity-sustaining. Kindness or caring from those nearest and dearest is not always a benefit at these times. Part of me wants someone to give me a hug and tell me, "it'll all be alright". The other part of me knows that those words, or worse a comforting touch, will break through the fragile shell of control and result in an unwanted flood of tears and misery. The irrational part of me wants both comfort and to be left alone. The irrational part of me expects my family and friends to intrinsically know this. Despite the fact I can barely understand it myself.

I know I am irritable. Everything and anything sets me off. A little corner of my mind knows I'm over-reacting but that doesn't stop me. Everything sucks. Everything is a personal attack. Every single little disappointment or mishap becomes highly salient. Everything is seen through a negative mindset. Socks not unrolled before they go in the laundry equals a personal attack. The dishwasher not unpacked equals the end of the world. I look at my Facebook newsfeed and hate everyone's perfect lives. I hate that they are travelling, that they are at the park, out to dinner, out to the movies. I hate that their lives seem golden. In my rational moments I'd never think that way. I am happy that my friends and family are enjoying their lives. I would never wish my life on them. And I know no one's life is perfect. That Facebook is a sanitised version of reality. But not in that moment. In that moment every irrational, narky, petty and horrid aspect of my mind comes to the fore, and I hate the world and all who inhabit it. I hate the reminders of a life I no longer have. But I can't stop looking. I can't stop seeing the perfection. I can't stop seeing that the world continues on without me. I can't see the reality because I'm too busy revelling in my misery. I have masochism down to a fine art. And in these moments I embrace it whole-heartedly.

I haven't had a break in weeks. I'm tired. So tired. More tired than I have been in months. My GP tells me I must consider that I've had a jump in progression. Now I can't get that out of the back of my mind. I keep trying to give myself a pep talk. "It's just the Summer heat. I'll be fine when the season changes. I just need to pace myself more. I just..." But in the moment I don't believe myself.

I realised the other day that I have forgotten what it is to be well. I've had health problems ever since I can remember but always there were breaks. Periods of relative good health where I got on with life just like everyone else. But that has now disappeared. I have felt sick and/or been in pain everyday for years now. One of my good days would send most people straight to the doctor or ER. I think that's what others understand least and what frustrates me most. And I realise I don't know how to convey it any more. I have lived so long with illness that I can no longer see it clearly. I play it down, I avoid the doctors with symptoms that would make others panic. I don't talk about it because I feel whingy. So I let things go for longer than I should and don't tell my family about the things that would worry them. I just exist and suck it up and put on my happy face. Not that there's really much choice. But you get weary at times.

I can no longer eat without pain. It doesn't matter if I adhere to my dietary restrictions. It doesn't matter what it is. Even water can trigger the pain now. My weight continues to drop and it is brought up at each appointment, with no solutions to be had. I am back to worrying about passing out each time I go to the loo or shower, although in truth my gastro issues are what worry me most. My general health has deteriorated and weakness increased. I try medication after medication and nothing works. Everything is just hard. And so, like many others, I have learnt to cry into my pillow at night so as not wake anyone, because the pain gets bad and sometimes it's just too much, but I just don't have it in me to talk about it all yet again. It's hard to keep on smiling when you feel dreadful 24/7 and all your emotional reserves run dry.

And I want to just be able to say it all free of judgement (both my own and that of others). Free of platitudes. Free of comparisons. I just want to give it all voice and have someone say, "I get it". No advice. No solutions. No pep talks or sweet words that'll crumble my carefully honed composure. People are uncomfortable with illness. As a society we want to fix others to make ourselves feel better, to avoid feeling awkward or uneasy. We miss the point that sometimes it's okay to just listen and say nothing.

The reality is that whether this is a permanent downturn or just an extended rough patch I will adjust. I always do. You can't live with chronic illness for years and not find a way through these times. It's just the getting there that's the hard part. It's knowing that just like physical health waxes and wanes, so does my emotional reaction to it. I want to be better at dealing with it all, but sometimes it gets the better of me. Sometimes I can't shut out the thoughts and feelings I hate so much. It feels like weakness. Or perhaps more correctly in my mind, failure. I'd never think that of anyone else. But me, that's a different matter in my irrational mind. I am my own worst enemy in that respect. I want to deal better but apparently I'm human, and that sucks.

Michelle

This song Take Me or Leave Me by The Magic Numbers, is always on high rotation in my maudlin play list. Everyone has a maudlin play list, don't they? You know for the sucky days. Now to toss up if I can manage half a glass of wine in the bath. What's it going to do? Make me sick? Bwahahahahaha.....

33 comments:

  1. I get it. I hate it too. I can't bring myself to go to another doctor appointment that gives me nothing but another bill. So when pains occur, I try to hide and I cry too. I have been checking your blog waiting for an update to help bolster me through my rough time. Thank you for your debbie downer post. I can see I am not alone even if you are on the other side of the world.
    Sarah

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  2. Thanks Sarah. Definitely not alone. I know for me everything has been so amped up lately with no respite and I am just exhausted mentally and physically. I know I'll get myself back together and I know you will too. Sometimes you just have to ride it out till it's done. xx

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  3. Wow I agree so much with your post. I felt like you were reading my mind as I read through this. I have been having a tough time too. I'm starting to lose my vision which is not normal with POTS as far as I know.

    I know this might sound crazy, but you have nothing to lose. I suggest checking out John Mellor. He's out of Australia and has healing meetings. Take care! :)

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    1. I hope they can find out what's going on with your vision, Dana, that has to be scary. So sorry you're having a tough time at the moment xx

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  5. Hi Debbie Downer, I'm Pessimistic Peggy! Hubs and I just had this convo yesterday. How I'm so sick and tired of being sick and tired. How I wish others knew how I felt and had more compassion, but I keep it inside because I don't want pity. Sometimes I long for someone to just hold me and tell me everything is going to be alright. At the same time, I'm tired of being the hostess of my own pity parties where no one shows up but me! I determined that I'm not going to have POTS anymore. I'm just not! Well...that lasted until I tried to eat a bit of dinner and then had to promptly retire to the couch for the evening. Where there are valleys, there are always peaks. Here's hoping you get to your next peak soon.

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    1. Peaks all round Pessimistic Peggy! It is amazing how many of us have the same internal dialogue at one point or another. I've hosted a couple of pity parties myself lately, I hate myuself for doing it, but it happens and in a way it does help to work through things so you can find those elusive peaks after. Hope you get a break soon. xx

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  6. Thank you for posting this. Like the other comments listed here, it is like you have just said everything that I am feeling. You are completely right aboutt he strong shell those with chronic illness must adorn in order to survive, and how it is so scary that underneath you are so fragile. Also I understand your point about how you feel guilty about having bad days, and how for you a good day would send most people to the doctors. It is so difficult when it is a chronic illness, with so many symptoms , like POTS, that affects every area of your life. I have been to both the doctor and the hosptial today and am pretty exhausted from having to discuss something so personal that seems to have so few treatment options? I also appreciate your comment about the coping strategies or what you have learnt over the years about what not to do, how to have the lulls. Also I completely agree that having time on your own, where you can choose the temperature of the room, the lightning , the amount of noise and not have to explain it to anyone, or beg or argue to make the stimuli aroudn you a little less suffocating. I often feel like I can just about cope with the physical and cognitive aspects of POTS and the other conditions that come with it, the hardest part is being a human, a person with other people , keeping quiet or trying to explain. Letting yourself moan without it going into a downward spiral, not becoming bitter and resentful at the hands of insensitive doctors. It is incredibly hard. It seems everyone else is living life and life as you say is moving on without us. But that isn't true, even though we feel like we are only existing, we are learning so much about ourselves , in the most personal way. We may have got to an old age thinking we knew what was important in life, but chronic illness really does make you realise what is important and how you would give anything to just have one day where you felt completely well, where you didn't have to plan , or rest or worry. Just a day where you are normal. But maybe what we learn through fighting and living with chronic illness will really help us not expend uneccesary energy on things and people that don't matter. It is incredibly tough, and reading your post helped me feel a little less alone, when it comes to POTS. I am from the United Kingdom, and although now I am discovering more and more people who have been diagnosed with POTS, for the first 4/5 years I thought I was the only person in the world. Incredibly lonely. You are not alone though, and your refreshing and honest post has helped me get through today. xxx

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    1. Thanks for your great comment Lydia. I think you're right about chronic illness forcing us to learn more about ourselves. It makes you review yourself and those around you and work out what really is important in your life. It definitely sorted out the wheat from the chaff as far as friends went for me.

      I'm glad you have found more people in the UK, Lydia. I know when I first became sick info in Australia was non-existent and I only knew one or two other people in the same boat. Thankfully things have changed. You probably know of them, but just in case STARS.org.uk are great, as are ukpotsies.org.

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  7. Your post was so incredibly touching. I felt as if I was reading about my own life in the words of someone else. I forgot what it feels like to be well...I haven't had a break in years. Something inside keeps me going. That little voice that says "Don't give up" when life really seems hopeless.

    I loathe doctors and refuse to give them any more of my money. I cry, scream, beat up on my pillows, and secretly despise those happy, healthy well adjusted people who are getting on with their lives. The people who look at me on the outside and see what appears to be a healthy girl, but have no idea the physical pain, suffering, and mental anguish that is happening on the inside. I don't show it. No one knows how much effort it takes just to go to the store and pick up a bottle of water. Some call it stoicism. I call it pointless. There's no point in trying to explain it to "normal" people. They will never understand. All they will do is offer a nice little pep talk to keep themselves from feeling awkward.

    I get it. But one thing I can say is that I am grateful there are people like you, and Dana who get it too. Thanks for sharing this.

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    1. Thank you Shannon. I must admit reading everyone's comments helps me feel less alone in this too. I hate that others are going through the same things but there is comfort in a shared experience. In many respects it doesn't even matter what illness people are dealing with, the emotional aspects are so similar. xx

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  8. I totally get it. And I totally understand. I don't worry about this post. What I would worry about is if you where always chipper, and tra-la-la-la everyday. You are human love. Going through a very hard thing, and some tough times. You are no hardened criminal. So you are at some point got to show the world what it's like living this life. It's not exactly rainbows everyday. I know I struggle too. I struggle telling all the bad stuff too. But rock on girl, and I'm here for you. Your friend to the end. Through it all. The bad, the good, and all the in betweens. No need to poop rainbows to keep me around.

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    1. Permanently perky is a worry. It's hard to share some of the less savoury aspects of life but as I said on a forum today I do think that sharing truth, even a shitty truth, takes more guts than portraying a fake sense of it's all fine and dandy. Doesn't mean I don't drive myself to distraction before I push 'publish post'. :)

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  9. I get it. And I totally understand. You are human! I would worry about you if you where tra-la-la-la all the time. You deal with a lot, and sometime you will have to show that you are sad, and pissed about it. I'm here. Your friend to the end. Through the good, the bad, and everything in between. No need to poop rainbows to keep me coming around. Love ya!

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    1. "Poop rainbows"! love it. I can always rely on you to not only get it but also make me laugh Dara xx

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  10. I don't have POTS. I have multiple metal toxicities and am in the middle of a years long and debilitating healing program that often had me feeling miserable with many symptoms and much worse than the actual illness.
    So I am here to say I get it too. Every word of it.
    I had the exact same pity party this weekend when I had to lay in bed rather than celebrate my birthday for the second year in a row. I've had several of them and I'm sure there will be more.
    My heart goes out to you, girl.
    Best wishes.

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    1. Thanks Sarah. Seems to be the season for pity parties at the moment. Must be something in the water. So sorry you had to spend your birthday in bed. I spent most of my son's birthday in bed too last weekend. Sucks some days xx

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  11. I don't have POTS. I have multiple metal toxicities and am in the middle of a years long and debilitating healing program that often had me feeling miserable with many symptoms and much worse than the actual illness.
    So I am here to say I get it too. Every word of it.
    I had the exact same pity party this weekend when I had to lay in bed rather than celebrate my birthday for the second year in a row. I've had several of them and I'm sure there will be more.
    My heart goes out to you, girl.
    Best wishes.

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    1. I'm so sorry about your birthday Sarah. The good only pity party for one. I have those too. Last year I missed out on my son's 18th birthday dinner, that was a huge pity party. It sucks when those events are missed. xx

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  12. I so strongly relate to this post. I am trying to tell myself that the way I feel right now is "just" "the voice of February" (and this time of year does really suck, in terms of pain levels and functioning and pretty much everything) but it doesn't make it easier... I get it. Thanks for writing.

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    1. Maybe if we both say it we can believe it, Lili? Here's hoping it is just Feb and March will bring better days for us all. xx

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  13. I sooooo get it but you know you are never alone coz you have all of us!!
    Feel the virtual love and hang in there.

    Caroline xxx

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    1. Thanks Caroline. I am grateful every day for everyone. can't do this crap alone. xx

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  14. With every last fiber of my tired, pain riddled being, I get it 100%. Nothing on earth proves the expression "there's no rest for the weary" like being chronically ill does. Yes, some people find things that help them somewhat, experience periods of remission, etc, but for many (and I fall into this camp big time) such periods are about as realistic as a room full of unicorns, mermaids and flying pigs. We might have marginally better days (on which we, more often than not, push ourselves way too hard to make up for the weeks/months/years of not being able to do any, or nearly any, of what we've been wanting/needing/hoping to), but overall each new morning is a return of the constant struggle just to find a way to keep our heads up (if only proverbially speaking) until night falls once again (or, if you're like me and your health plays havoc with your sleep, you're up at night and sleep during the day). Few who are not in such positions themselves can even remotely understand what this life of being chronically ill everyday for years on end - this state of purgatory - is like, and in a way I'm grateful for that because I wouldn't wish chronic pain and a never-ending list of symptoms like the ones you and I endure with our respective conditions on my worst enemy.

    With you in understanding always,
    ♥ Jessica

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    1. You are so right, Jessica. It is like a constant state of purgatory. I really don't know how we can explain it to others not in the same boat. I put up a link to The Spoon Theory yesterday and I know that helped some of my well friends understand a little better. But it's hard to explain what it's like to always be ill, and that just the severity differs. Our good day is still a bad day in a healthy person's life. As you say I wouldn't wish this on my worst enemy. And yes I am insomnia girl. I've tried every remedy under the sun and still I lie awake at night staring at the ceiling. Most of the time I can distract myself from it all as I'm sure you can too, but every now and then it just gets really hard. xx

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  15. I'm right there with you~long overdue for even a 1 hr.break.My visions also being affected.Previously Kell loved to read.Now the mail&magazines r piled up around my couch.I exist on my couch,my best friend is my Mediflow water pillow.Who am I,the blob!?Now I lay here day after day,waiting~for what?My mood&faith stay strong most of the time.Then after so many weeks of waiting the blackhole gets bigger&I fall in.This time is different,usually by the next day I crawl out&continue the fight.This time I feel too weak.Is anyone out there to help? Nevermind,they just don't get it...set a goal,force yourself,blah~blah~blah!!Thanks for letting me vent. BTW,I LOVE~SQUIGGLY~LINES~;)~

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    1. Vent away Kelly we all need to. I think there are times where it just gets to be simply too much. When there is no break and the losses and illness are just unrelenting I think we are entitled to say it sucks and as you say fall into the black hole. We're only human, as I keep getting told. I hate feeling this way as it's just not me, but sometimes you have to feel it to work your way through it and come out the other side. In my better moments I realise just how strong we all are to keep getting back up time and again for years on end. It's not the strength people normally think of, but it's strength all the same. Hope things start to look brighter for you soon. xx

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  16. It is good to hear someone else say it.. I get and at this point I am in pity party mode too... I force the constant smile and it is ok and when I fall I blame myself what could I have done differently but after a little while I force myself up with mo complains and go on with life like the world is perfect and I am not in pain or misery so everybody around me can feel better and not worry so much.. I hide for the world a lot because it takes all I have to keep everybody around me from seeing how close I am to falling apart because they cant know it would hurt my pride and make me look weak and I am not weak.. I refuse to be weak... I say a quote on facebook which applies it was something like God only gives us what we can handle so god must think I am a bad ass.. It fits for all in our condition.. thanks

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  17. It is good to hear someone else say it.. I get and at this point I am in pity party mode too... I force the constant smile and it is ok and when I fall I blame myself what could I have done differently but after a little while I force myself up with mo complains and go on with life like the world is perfect and I am not in pain or misery so everybody around me can feel better and not worry so much.. I hide for the world a lot because it takes all I have to keep everybody around me from seeing how close I am to falling apart because they cant know it would hurt my pride and make me look weak and I am not weak.. I refuse to be weak... I say a quote on facebook which applies it was something like God only gives us what we can handle so god must think I am a bad ass.. It fits for all in our condition.. thanks

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    1. We are all so much harder on ourselves than anyone else could be. I'm like you and often think in terms of weakness and failure, which is crazy as I'd never think that of anyone else in our position. In my rational moments I realise that, but those irrational times when I am overwhelmed I could repeat your comment verbatum. Self-compassion is something I am still working on. I'm better at it now than I was at the start but I really do need to staple a "Be kind to yourself" sign to my forehead. PS I think we are all bad asses :)

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  18. I HATE the heat, and the Sun (Lucky Me I live in Florida) I cannot WAIT for the cold weather to come back (what little we get) This is a bad time of year not just for me but for a couple of my children as well. I know the winter is coming (A Game of Thrones reference but around here.....) and I'm more then ready for it! It IS worse this time of year. You're human and you're allowed to be you know. And our lives aren't perfect. And you've got things in yours that some of us wish we had too. I'm going through something right now that leaves me wondering "Whose fault is it?" and the answer may be, no one's. Maybe that's just how it happened. We'll never know. But it doesn't mean it hurts less or that I don't cry. And believe me I DO understand about how writing can help you sort things all. Have you seen my folder on FB? I wonder why I ever stopped. Probably because it was a happy time or a Busy one. But on the days when the tears are here more then gone here's a few from my list.

    https://www.youtube.com/watch?v=6_X-dLTjXAk

    Or This one

    https://www.youtube.com/watch?v=StFfXP4eAgU

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx