What other options are there?

There are the times when nothing works and all the fairy tales I tell myself to continue through the day fall away and the stark truth is there sitting in front of me.  Nothing but pain.  It is so great and so overwhelming that nothing else can touch it, yet I can pick the cacophony of pain apart.  Each different type of pain, the stabbing, the bruising, the deep ache, the prickly, the weird feeling of needle sharp burning footed ants crawling over you, the numbness, tingling, ripping, stinging – a collection of pain that the most accomplished torturer would be proud of in their repertoire .  I’ve tried to work with it, to fight against it, to work around it, but in the grand scale of pain vs Nicola; pain has the upper hand, like it always has done.

The painkillers don’t really work and now my greatest fear is happening, that the side effects are eclipsing the relief.  I can’t see myself resorting to alcohol or cutting myself as a release valve, that would be too easy and too temporary.  There is no release.

And family?  The thing that I have held up as the reason to carry on for all these years?   I feel like that I am continually holding back the reality of the pain so it doesn’t taint them, that if there is only one thing I can do to help them, then this is it.  Yet it is already seeping into them and I can’t stop it.   For nearly 10 years, I have just been ‘carrying on’ for them, keeping up the appearance that everything is ‘a OK’,  that I am soldiering along.  But I am not and when is it enough?  I feel that I am the greatest drain upon them.  No matter how polite, how I try and only say nice things, be pleasant, say ‘yes’ to everything – it is never good enough.  I push myself into the mould of perfect daughter and it never works.  They have said that they know that I am in pain and “it doesn’t do anyone any good going on about it.”  Of course not, who wants to hear about it all the time, I don’t.   

When can I just admit, ‘this is too much’.  Please. Make. It. Stop.

I have this inner fury that I don’ t want anyone to know about, that I constantly push down.  I want to scream and show just how broken I feel.  I want to shout about how unfair it all is and not keep it all stuffed in like a good girl, like a good patient, like a good daughter.   I am sick of shaming myself into carrying on by telling myself how worse off other people have it,  living in a world where I force myself to be content with my lot by saying ‘it could be so much worse, so just be grateful that your life is this living hell and not another.’

I have no purpose in this world, unless my purpose is the unending struggle with the pain.  Is this some kind of entertainment for someone up in the clouds?  A battle where the outcome is always known, but the process is oh so much fun to watch?  There is no peace for me, no respite. Instead the only change I have is the minutes and hours when I find a vague reflection of who I used to be, yet I can never be again.  A special kind of torture.

This isn’t depression.  I’ve just had enough.  This is not who I am supposed to be, trying to fulfil small tasks that invariably fail, aren’t good enough or are just wrong, while my contemporaries are having a life, continuing into the realms of marriage, children, house ownership and careers.  I never wanted to be this person, yet I am* forced* to be her.  I have no choice in the matter, and it’s so unfair that it burns away in my soul.

I can’t see a future where I am magically able to cope and there is no medication being developed to help on the horizon.  I have it in writing by the man in a white coat that “it is better to be left well alone”.  The prognosis, my future, is pain and I have to just hope that it won’t get worse, because the likelihood is that it will.

I can see the burden that I am to those I love and I am repeatedly aware of all the things that I am not.  I feel the frustration of all the things that I could do with ease, that are now a struggle.  My childlike list of all the things I am grateful for or make me happy is actually a daily process of clutching at straws and one that is always falling short.

What will I do?

Carry on and hide it all from the word because what other option is there?

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3 Comments

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3 responses to “What other options are there?

  1. troy

    Thank you for your brutal honesty. Nicola.

    perhaps beyond western medicine, perhaps Majiuana?
    http://www.webmd.com/pain-management/news/20100830/marijuana-relieves-chronic-pain-research-show

    I think you need some sort of outlet for the rage, else the repression alone will cause other side effects. Get a isolated sound proof practice room, allow yourself to scream, get a foam bat and a sports bitegaurd, have a good old fashioned temper tantrum, beating kicking, punching, pounding,crying.

    The world is a big place, your body complex, the internet not all knowing. Your doctor does not probably know everything, and cannot see the future of what will happen with therapies that haven’t been imagined yet. There is still hope.

    Perhaps write and connect with others like yourself? Find what they have done?

    Perhaps set a boundary on how far your willing to go. Existence is not mandatory. Not all life is worth living.

  2. Nicola

    Hey
    Thank you for replying, I suppose it does sound a little more honest than the old days 😉 Thankfully I was able to talk through this all with my therapist which really helped, given that it’s the 10 year anniversary in January she was anticipating a little melt down so it’s good that she was aware of the triggers even if I was blissfully unaware – Always the way, I am so absorbed with handling the pain that the reason behind it tends to escape me.

    Once again this HSP stuff has had a real impact, not only is it PHN, but this weird inability to fully repress the shingles virus and that my nerves get damaged easily creates this weird combination that requires medical professionals who are willing to ‘think outside the box’, who knows what someone might come up with, but it’s a case of finding them. As it is so odd it is hard to find fellow sufferers so the aim of this blog with to cast the net a little further. Pain is pain and when it comes down to it, we all hurt in the same way.
    Thank you again 🙂

  3. troy

    That’s Great that you have a therapist who can be your extended consciousness and help give you perspective and guiding life. Processing pain dramatically lowers IQ/awareness.

    In typical NT fashion, I’ve studied health/disease/environment for awhile (after losing two parents mid age) looking for clues.

    Shingles seems pretty hardy, but I suspect that there are other factors, like suppressed immune system, from allergies, toxins etc that might be helping them stay. I’ve read from a controversial book, that some viruses like shingles live in parasites in the human body which means that.they are insulated from normal body immune defenses, which means they are a perpetual battery for reinfection.

    If your willing to try it, you might look into juice fasting (master cleanse) which might improve energy especially if you are secretly allergic to say wheat/milk etc. get a parasite cleanse kit, getting your mercury fillings replaced with non-mercury, get house tested for mold, all of which can help your immune if it’s suppressed by environment you can control. Even if not fasting can help reduce some of the toxic side effects from the medication you’ve been taking.

    I don’t think we all hurt the same way actually. There is a spectrum of types of pain and intensity scale beyond that, most people are blissful unaware of. Never damage is especially weird a person who has never had nerve damage, cannot fathom what it’s like to have say the equivalent of a ice pick randomly jabbed somewhere it doesn’t’ belong, yet no visible damage to explain it and little to no warning as when it’s going to happen. Having RSI and having friends with severe migraines, there are metrics of your experience i have never heard described by others/experienced, who are also in various forms of hell with no perceieved gatekeeper/bars. One is in the hospital as I as type.

    All that plus add in HSP, I’m honestly amazed your still around.

    Troy

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