Half-life of pain

The half-life of chronic illness

 

I am so ready for a pity party. I suppose, we have the right to it now and again.

Things I want to complain about:

  • This relentless nausea
  • The relentless vestibular symptoms
  • The relentless pain
  • My insurance company
  • This half-life

The half-life of chronic illness

The insurance company and my mom

So my mom is literally paying for my existence at the moment. If I didn’t have her help, I’d be going bankrupt for sure. My insurance company told me they wouldn’t do anything with my file until I saw the ENT. That took 5 months. I phoned them before the appointment to just beg them to reconsider. And they informed me I hadn’t filled out a necessary form. That they didn’t send, so not being psychic, this non-existent form did not get filled out and I didn’t know it existed. So I said, I’d gladly get my doc to fill that out, if they would actually send it to me. So my doc now has that, and has yet to fill it out. So I’ve been in limbo since December. And none of my bills would have been paid at all without my mom’s assistance. Because I burned through my savings the last leave I had, which was unpaid for altogether. And then I burned through the remainder to live on. So I am sub-zero broke at this point.

Half-life of pain

This vestibular issue being added to my pain

I also have medical issues to deal with, which have not been kind to me. This constant swimming in my head, motion intolerance and disequilibrium is making me constantly nauseated. And sometimes leads to just violent vomiting. My mom bought me some Gravol today, so I only threw up a little on the max dose of that. I get physically hungry so I have to eat, but keeping it down is a real struggle.

Half-life of pain

So that in a nutshell is my pity party at the moment.

And then comes this thought. I’m just living a half-life.

However, when you are in a lot of pain and extremely stressed it doesn’t help with the mood regulation. With my depression untreated I’d be suicidal about now. Those thoughts of how functionally useless you feel as a human being who can’t even pay her way in the world… they get to you, man, they just really do. It would have driven me back to work and then it would have driven me to a suicide attempt or suicide. I know my brain. I know when I feel trapped and out of control of anything, when the pain is so relentless, that I’ll get suicidal. But due to the depression being moderated by medication… it is just this mental slumps I get. When I am tired. Stressed. And in pain.

And today is one such day.

Because when your thoughts are all mucked up things occur to you. Like this life, isn’t really a life at all. It is some sort of limbo half-life. I have to rest a lot, sleep a lot, and every single thing I do in the day makes the vestibular symptoms worse as the day goes on. The pain is endless and you feel useless as a person. You are not personing right.

What life? Really, what life can I have like this? Where feeling ‘good’ is a moderate pain day and not vomiting everything I ate at the end of it. And you feel like you are dragging everyone around you into this vortex of suck. Because you are the cause of the financial instability. If I were ‘normal’ I’d have a fine career. And if I was less sick, I’d at least have a part-time job that wasn’t what I wanted, but would beneficial to my existence. So you may not feel guilty… but you blame yourself for being sick. You blame yourself because if only ‘I was a functional person’ all this hardship wouldn’t even Be there.

And you see people socializing and going out and having some actual fun… that you can’t do because your functionality sucks. And you see friends with great careers. And it makes you a little sad.

And even the littlest thing like some light housework is this Momentous ordeal. That just ruins you for the rest of the day. Everything so so much effort. Just existing is so much effort.

And I know, and you know, logically and rationally this is not our fault. We know that. We are told that. We are just trying to deal with our illnesses and it puts severe limitations on us. But while I know it isn’t my fault… there are still consequences. Like, I can’t financially support myself. Like without payments from the insurance company my mom has to pay for her 41 year old daughter’s existence. She is my mom. She loves me and I love her. Doesn’t change the fact that is her money and she shouldn’t have to support me. And this cannot go on long-term, because my mom isn’t made of money. And it also means, I can’t function well. And I can’t do all the normal things someone does in life.

So while I know it isn’t my fault and I shouldn’t feel guilty I am still keenly and deeply aware there are consequences to my illness I have no control over. And it is like this vortex of suck just spreads. And we are not to Blame for these consequences. What ifs are not what actually IS. So yeah if I were healthy I’d have a career and social life. But that isn’t the life I have now. This is my life. Not some hypothetical. So I shouldn’t blame myself for the consequences of my illness. But we have to deal head on with those consequences. I can’t work. I have no money. If my insurance goes though I will have a severely limited budget. And that is something I have to deal with all the time, forever.

What I know is this:

  • Don’t feel guilty about what isn’t in your control
  • It is not your fault all these things are happening
  • But we still have to deal with the fallout of our illness
  • And we cannot blame ourselves for being ill.
  • And being dependent on the people around us shouldn’t make us feel guilty, it just means we need help sometimes. From my spouse doing all the shopping. To my driving me to my appointments. People care for us and want to help.

And hopefully if I say that to myself over and over I’ll believe it.

Half-life

This feeling that we are not living we are just existing… is a common one. Or this feeling this ins’t a life, it is a half-life. It is pretty normal to feel this way because our limitations can be extreme. Illness can wax and wane. At times we are incapacitated by it and other times we have mild functionality. And it means everything is an effort. And every effort we make into doing anything at all crashes us. It is normal to think that.

We just feel like our existence is meaningless and that the world wouldn’t be a different place if we never existed.

And in these times I tell myself:

  • I am worthwhile to my family because they love me
  • I may not be very productive, but I try to do minimal things
  • My self-worth is not tied to working. We are more than that.
  • And the things I CAN do are worthwhile. The little things we do, when we can, mean something.
  • I may be ill, but I am still me
  • That I have value to those around me that has nothing to do with how productive I am.
  • That no one blames me for being ill. And no one thinks it is my fault.

And I usually focus on self-care when I feel so utterly worthless. Or work on my hobby for short periods of time, to make me feel better. So maybe it is a half-life. But it is my life and we have to looks for the gleams of sunshine in it.

Having a pity party is normal. Sometimes we just feel so stressed by things out of our control. But in the end, we still have to live our lives and deal with the consequences of being chronically ill.

Read also:

Guilty of being chronically ill

Dealing with lower functionality

Chronic illness and worry

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9 comments

  1. Thankyou, for putting into words how my life feels and how I used to feel. The worthiness and self value based on what I accomplish or contribute to the world. Instead of my new reality, based on the fact that if I make it out of bed and change from my night grown might be the only thing I am able to accomplish today and that is enough. At least I’m alive to do that.

    Liked by 1 person

  2. Thank you for writing this. I see you. I get it. And I know how hard it is. Chronic illness sucks, and it means everything to be given permission to just let it suck sometimes. we all do have to work on knowing that we are not required to earn our existence, or love, or acceptance. We matter. You matter. Fight on, brave warrior. I appreciate you.

    Liked by 1 person

  3. Phenomenally good- just shared this link with Migraine Headaches Support Group over on MDJunction.com- thank You so very much Nikki for sharing such an awesome eloquent article on your blog with us! Have regular migraines plus also have Fibromyalgia like You, too, so can identify with You so very much! Though am an ambivert ENFP unlike you who is more introverted, still, see a kindred spirit in You plus really enjoy your blog so very much! This post reminds me of the fabulous Jane Austen quote- โ€œ Iโ€™m half agony, half hopeโ€! Am an optimist yet there are times when everything becomes so overwhelming – you have to keep it real ;-)!Sending warmest wishes plus risso dolphin smiles across the miles to You from here in Devon in south west England to You in Canada :-), Clara ๐Ÿ™‚

    Liked by 1 person

    1. Thank you so much for you comment. I’m glad you found something to relate in it. Although I wish neither of us could relate to it. You know I have real envy for ambiverts, they have the best of both world! But yeah I am pretty firm on the introverted side.

      Like

      1. Nikki,Great to get your reply as have followed your blog for a long time plus shared links to your sublime snippets over on my groups on MDJunction where am a group leader there. Being an ambivert is a blessing as well as a curse in some ways as is being an Empath-yet have embraced this about me now ;-)! Love introverts- have both introverted as well as extroverted friends plus married an introvert! Our dog Sebster is ambiverted like me- loves people yet needs to recharge batteries too- it is so funny ๐Ÿ˜‰ how alike we both are plus he is also gluten intolerant like me! Keep posting your excellent eloquent posts that will keep sharing links to, okay! You are awesome!! Hugs from here in Devon in England to you in Canada, warmest wishes across the ocean Clara the ambivert ๐Ÿ™‚

        Liked by 1 person

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