Tuesday, 17 April 2012

Setbacks.


I know many come here for a moments laughter and respite from the absurdity of life with chronic illness, so I feel like I should add a disclaimer from the start. This isn't one of those posts. I am not shy in discussing the less glamorous sides of the physical aspects of illness so it would be disingenuous of me to shy away from the emotional detritus that also occurs.

I have been much worse this year than others. Though in truth it is longer than that, with the last 4months just a continuation on the previous year's exacerbation. Attempts to fight through it have mostly ended up in simply causing more problems. My presentation remains problematic and more disheartening diagnoses are being raised. Reports come back with words like "marked decline" repeated over and over and I have to admit it's been a struggle to try and keep a stiff upper lip. I am referred to more specialists in the hope that someone, somewhere, will have an epiphany. Not an epiphany about treatments or cures. Just that I may eventually be able to give a clear name to what is causing my body to slowly destroy itself.

I have clarity in some aspects but in many others I am still living in the shadowlands. And this is a difficult land to negotiate. Mostly I can compartmentalise. I focus on the small day-to-day needs and don't plan past the moment. I amuse myself with small things and generally don't register that my life fails to be even remotely similar to that of others my own age. It is certainly a better mode of existing than constantly worrying about the future. But sometimes moments arise and the calm I have so laboured to construct is shoved aside, as if it never existed.

Sunday night brought things to a head once more. After a day of crushing chest pain, worse than I have had in a very long time, and severe tremors, my body went into meltdown. For the first time in a very long time I passed out not once but twice, whilst sitting on the couch. Not even standing. Not even after an arduous day, or sitting in a hot room. No discernible precursor, apart from some gardening the day before. And it was quick. None of the usual lead up that gives me time to sit or lie down and avert full collapse.

There was the shift, as if the world hiccups, that heralds such moments. And then the waves of heat, the nausea, the weakness, the roaring wind in my ears and darkening of vision. There were dinner plates thrown at Mr Grumpy. Pillows shoved to the floor and a frantic attempt to get flat. And then the tears. Those damned tears. Sudden drops in blood pressure can cause tears, but there is also the frustration. The complete lack of control and the instantaneous knowledge that my normal abnormal is likely gone once more.

Add to that the fear it generates in those around me. My children have born witness to my illness from the beginning. I like to delude myself that they are coping well with seeing me like this. That they have found a sense of peace with it all. Anything can become normal if you live with it long enough. But in that moment when I was lying with my feet up the back of the couch, trying to hide the tears streaming down my face under an icepack, I realised how tenuous their comfort was. The fear on their faces and the tremble in the voice, bellies their stoicism. To witness it once was confronting. To see it repeated within the half hour was not what they needed. The reality of my illness was stripped bare before them and there was nothing I could do. To have them both come into my room the next morning to check on me. To tell me it was okay if I couldn't drive them to school. That they were concerned about me passing out at the wheel on the way home. It hits you hard. Such burdens should not be placed on such young shoulders. And the guilt that engenders breaks my heart.

To see Mr Grumpy shaken is perhaps most distressing. He is the strong one. The one who gives me strength when my own is failing. He is generally unphased by my state. But in that moment I realised how much I rely on him and how much he carries with little in the way of complaint. There was realisation that my illness affects him much more than I had ever imagined. And I want to tell him I'm sorry for giving him this burden, even though it was never my choice.

For the first time in a long time I cried myself to sleep. The pain, the fear, the physical and emotional wretchedness that are created in these moments given free reign. I let the little voices that come out in the dark, speak their venom. I hate it, but it is part and parcel of this life of mine. To pretend these moments don't exist is to deny the realities of what it means to be ill.

As I finish typing I wonder whether 'Portents' would be a better title. As much as I try to remain positive I have to wonder if this is just another sign of things to come. It is hard to not get disheartened when improvements are only measured by the a slight decrease in symptoms after yet another spike. When the only symptom that has been well controlled has risen not once but three times in less than a month. That the permanent pain in my left leg has now spread to my left arm. Such that both now feel like someone has taken a crow bar to the bone. And yet conversely, I burn my wrist on steam and don't feel it, and can poke the large black bruise on my arm with impunity as the dead nerves no longer register the sensation.

Where for the first time in a long time I feel like I did right at the beginning, before a diagnosis and before medications. It's a scary place to be and not one I truly want to face, but in reality must. If I hide what I am feeling not just from the outside world, but from myself, it will devour me. If I tell others that to admit the negative aspects of this illness is both courageous and freeing, how can I not do it myself?

There is catharsis in truth, no matter how ugly and scary it may be.

Michelle

For those who don't know I am in the running for the 2012 Best Australian Blogs Competition. If you'd like to vote for me (though after the depressing purge above I understand if you don't) click on the icon below. There are many other fantastic Australian blogs in the running so you can always send a vote their way.
People's Choice Award

31 comments:

  1. I voted for you and I hope you can find a small ray of hope within that dark cloud because I know what those are like. I hurt for what you are going through and I am there in spirit cheering you on!

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    1. Thanks Niki :) I'm hoping I'll pick up soon. I think it's just one of those moments where it all became too real. I mean I know I'm sick. I know it's getting worse. But this was just a bit too 'in my face' for comfort. Just exhausting.

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  2. I found it difficult to read that post due to me bawling my eyes out but just wanted to say that it really is ok to not be strong sometimes. This illness sucks and every now and then we need to acknowledge that. I'm so sorry that you're suffering badly at the moment and with a huge feeling of helplessness that I can't make things better for you, I send you massive cyber hugs and let you know that there are people cheering for you.

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    1. I'll take those cyber hugs and cheers right now. It's funny, my eldest told me yesterday that I don't have to be strong at times like these, must be a great minds thing. He gave me strict orders to be selfish when I'm going through a bad patch. But it's a hard idea to wrap my head around.

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  3. I have nothing to say... *sighs*

    Bless your heart...

    ... and I voted for you. :o(

    *huggles*

    ~shoes~

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    1. Thanks. Sometimes there just aren't words, but will take huggles :)

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  5. (first comment went wrong oops) I voted for you because you are the best.
    Don't apologise. None of it is your fault. I understand the guilt we have talked of it before but remember they love you and always will. You are not letting anyone least of all yourself down. Perhaps the gardening was approached with a little too much gusto - I know I know pacing is so boring. Perhaps pots to start with, and someone else gets to do the boring heavy stuff. You get to choose the flowers for now.
    Take care Michelle and remember baby steps. I am thinking of you. xx sending you a tweety tweet tweet.

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    1. Good old guilt. I know it's not my fault in the logical moments, but those illogical emotions are a bitch. I'm sure this time next week I'll be fine. I mean I'm better today than I was yesterday or the day before. Just feel completely dreadful and exhausted, worse than I have in ages. Thank you for your tweet, it was much appreciated xxxx

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  6. Hang in there, Michelle. I know those days can be difficult and quite scary. It's a lot to take in, when life doesn't go anywhere near where your "plan" led. I am so incredibly moved and inspired by how courageous you are, and you should know that your strength instills such bravery in other dysautonomia patients, myself included. Keeping you in my thoughts and prayers, and keep fighting the good fight! :-)
    PS... I voted for you, too! :-)

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    1. Thanks Steph. You're right, it is scary at times. Knowing that you're progressing intellectually and having it spotlighted and in your face are two very different things. Especially when your kids witness it. :( Thank you for your lovely comment. It does make it all worth it if someone else can find a little comfort from what I write, though I wouldn't wish these experiences on anyone.

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  7. I couldn't make it through without crying. I know it's cold comfort but you are absolutely amazing, and absolutely entitled to moments of breakdown. Gah, i wish i could come up with something to say that could help, and didn't come across as cliche. But please know i'm sending big hugs and happy thoughts your way :)

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    1. I know you're going through a rough time too Azaleah so I'll send hugs your way too. It is hard not say cliche comments at times like these but the meaning and heart behind them are what matters. Here's to better times for us both :)

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  8. i want to say like you would to people normally, hope you feel better soon. yet with pots you know thats fruitless. what i can say is i hope they find a med that will help you feel at least a little better. to ease some of the symptoms.

    i spent last night not breathing properly. trying to get into the habit of making yourself breathe is something i cant get used too. i know where your coming from michelle. the despair at this stupid,crazy condition.

    cling onto what you can, feel crap, appreciate the small, do whatever gets you through the day. keeping my stupidly long marfan type fingers crossed for you. xxxxxxxxxx

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    1. Oh Em I'm so sorry you're having difficulties with your breathing :( You're right it's a stupid crazy condition. I'll cross my fingers for you too that if nothing else things will ease up a bit xxxx

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  9. Ah man I hate that you are having a rough time. I hope it passes soon. Sadly I can relate hun. When I went through my stroke, and couldn't drive. Not driving with 5 kids is um hard, but yes I totally get what you mean. They would apologize to me. I would be like "it should be me that should be sorry" I understand, and I'm here for you. Thick or thin. Bad or good. I hope there is light at the end of this crapfest soon honey.

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    1. Thanks babe. I think the kids issue complicates it all. As a mum you don't want them to hurt or have to deal with this kind of issue. It's bad enough when someone else is the source of crapness, but when it's you it really really sucks. Glad to have you by my side in this xxx

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  10. Do you have a diagnosis of EDS as well as the other?

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    1. Haven't got the official nod on EDS, just 'connective tissue disorder' at this stage, still waiting on that appointment. But I have the frequently popping joints, bendy bits, easy bruising etc etc. Runs down my mum's side of the family, but I'm the first generation where it's become so problematic.

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  11. ::tears:: my heart breaks for you.

    I can't stand what i am putting my family through. And some days the knowledge that i dont ever get better than i am right now.... and that eventually i'll have another setback and even this will be preferable to whatever that new normal brings....

    You don't have to be strong today. With whatever we have, for as long as wr have it to offer, we'll be strong for you.

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    1. I'm so sorry you are dealing with this too, Melle. So many of us are dealing with these issues, just breaks my heart. At least together we can share and support each other, that's what makes it all bearable in the end. xxx

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  12. For most of my life, my mom has dealt with illness and I know she had some of the same concerns about me and my brother dealing with it all. I won't lie and say it was always easy to deal with growing up so fast, but I never wanted her to feel like she should feel bad for not being strong all the time, or letting us see how bad things got sometimes, or that it was too hard for us to handle being strong for her. I've never wanted her to feel like she should hide the bad days and, even when things were scary, I am just glad to be there for her. I imagine your kids feel a similar way. I'm sorry that you and your family are having to deal with all of this. Just want to send my well wishes and support.

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  13. Hi Michelle ~ I'm here in Florida, in the US. Last week, I stumbled upon your blog and was amazed at how you put my life in to your words so perfectly. I copy and pasted some of what you wrote and added in to my last blog post, cathysjournalupdates.blogspot.com. I'll be checking in to see what comes next! Thank you for writing!
    Cathy

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    1. Hi Cathy, glad you like the blog. I'll check yours out when I get a chance. :)

      With the copying and pasting, I don't mind people copying from the blog as long as there is a link back to here and authorship added. Thanks :)

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  14. ...also, could you tell me how to add the live traffic feed to my page. I am amazed at how many read my blog, and would love to see who is checking in. Thank you!

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    1. Gosh I had to think about that one. I think if you go to Feedjit (the program) it should give you the html to add to your blog. Are you using Blogger? If so, in the Template section you can add a 'gadget', click on that and it'll give you options. Click on "add html" and add the data from Feedjit. Hope that helps. :)

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  15. ...I'm a pest...also, the follow by e-mail feature. I am clueless!!

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    1. The e-mail feature is also under gadgets. Just click on it and add it to your template.

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  16. AS a newly-sick, this is me all the time now - scared beyond all reason. That you can mentally and emotionally deal with a progressive prognosis is a testament to your strength and determination, though I'd wager you'd trade both for some health and peace. I pray both for you. And for all of us.

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    1. It can be so hard to deal with. I struggle at times, but somehow, I'm not always sure how, it gets easier. The scary becomes a strange sort of normal and knowing things like the crushing chest pain isn't going to kill me, although it hurts like hell and feels like it will, makes it easier in a a sense. Not pleasant, but easier. If you've got a good doctor, finding what is causing each symptom and what it means helps, finding forums where everyone is experiencing the same sort of thing helps. In a way the comfort is the product of a lot of little things rather than any one in particular. And time. Time helps immensely. I read this now, 3yrs later, and know that I am in a better place mentally now.

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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