Thought for the Day:

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

Sunday, September 28, 2014

I've had enough!!!


Right now, life is really tough and I'm feeling that I've had enough.

Daily, when I try doing things, I'm faced with my weakness, the many barriers to living, courtesy of this illness.

Examples:

  • I try to pull the dead tomato plants out of the planters and don't even have the strength.  So I look at those dead plants every day and it's like they're giving me the finger, that I can't even manage to clean them out (and either must ask to my roommate to do them - feels like grovelling - or sit and look at them indefinitely as they mock me).
  • I try to go through some boxes full of old papers, and get shaky just lifting piles of paper!
  • I do laundry and carrying the laundry up the stairs has me winded and laying in bed for an hour afterwards.
  • Similarly, I change the cover on my duvet and have to stop for breaks from the weakness in my arms, and being winded.
  • I manage to move our light aluminum ladder in the yard but my muscles shake and twitch for hours afterwards.
  • I run a quick errand to the drug store and get the spins, lightheadedness standing in line. I feel so sick from the ordeal that I sit in the car afterwards in tears.

How do I feel? Angry, frustrated, a failure, useless, helpless, emasculated!!!

I HATE not being able to do things.  And being someone who is fiercely independent, makes it even harder.

This past week I decided to drive myself to a park which is an hour away.  I haven't driven that long since 2010.  I put my tent and sleeping bags in the car so that if I made it to the park, I had a day/night to rest there until I had to drive back.

I've been feeling so trapped and angry and alone lately, that I just wanted to escape, to be able to do something for myself. Daily, there are things I want/need, but just have to let them go, because I'm unable to do them myself.  Or similarly, I try to do them and either manage and pay, or worse, can't manage and end up feeling more useless and indescribably frustrated at how hard seemingly simple tasks are.

To boot, I'm lonely.  I have almost no friends or acquaintances in this town.  I can't remember the last time someone here actually asked me if I'd like to do something with them/spend time together? (early July?).

And have I made any friends in the last five years? No. How do I meet people when I don't work, when every time I attempt something out in the community, the real world, I fail due to my limitations.  (e.g., if I'm at a restaurant I'm lightheaded and so focused on how ill I feel, I'm not very social).  I guess I'm saying I don't blame people for not wanting a friendship (or hell, I'd take a shallow acquaintanceship) when I'm miserable to be around, and rarely make the effort the other way.

But I'm feeling done.  I'm just tired of this life.  I'm beyond frustrated with my inability to do better, and to cope with my limitations.  I'm not managing and I feel alone and useless and incredibly unloved and unlikeable.

After returning from the park, I spent the whole day in bed, weak, achy.  I felt (quite literally) like someone had clubbed me in my sleep.  I had a horrible sore throat and a fever.

You know, the worst of it was the drive, something about driving is super draining.  I did OK sitting out in the park on the most glorious day of the autumn!!!  And since there were critters running around our campsite (mostly skunks and foxes), my dog was up most the night growling and on edge (and keeping me up).

So after maybe 4 hours of sleep, I woke up just before dawn.  The sunrise was amazing and our campsite was on the water, so I took photos and enjoyed the sunrise.  Similarly, the many times I was up in the night enabled me to so see some Aurora (they weren't that great) and the splendour of a sky full of stars.  Since I live in the city, it has been two years since I've really seen a good dark star filled sky.


As well, spending the day just laying around, enjoying the peak of fall colours was a real gift.

But the drive home was awful, and I realized why I haven't attempted a drive this long since 2010.  On the other hand, I wonder how I'll mentally cope much longer knowing I can't drive very far and 'escape'.  It makes me feel even more alone and incapable of having any power over my life.

I just see no use in me being alive.  I live off the government (disability), I make no positive difference (that I can see) to anyone's life.  Obviously I'm depressed.  And while a day in the splendor of fall was a great tonic (I wasn't depressed the whole day), now I'm both sicker and more depressed realizing I have to live through (how long?) of sick hell pay-back alone, with no one who understands, no one to talk to which might 'take the edge off'.

I'm posting some of my photos from my amazing day :)
Do you have a favourite?

Note: The feature you see in some of the sunrise/sunset shots is something known as the 'Sleeping Giant" here.  If you use your imagination you can see someone laying on their back (head, adam's apple, chest and feet).








Long Shadows: Woman and her monster?

I loved the evening light on the rocks


sunset from my campsite

dawn







early morning swamp (drive home)

14 comments:

  1. I cannot imagine what it is to grieve the person you once were at the same time as trying to come to terms with who you are now. I cannot imagine the frustration you feel to not be able to do the things that give you the greatest peace. I cannot imagine how it must feel to know there is no cure, no perceived light at the end of the tunnel. But I do know that you somehow have the inner strength to share your world with us through your words, photos, art, and experiences, and THAT MAKES A DIFFERENCE. To many. Let the tears come, let the anger come... and let the peace come to your spirit.

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    1. Thanks for your kind words. It can be devestaing as you say to see no light at the end of the tunnel, which is what it was feeling like when I wrote this post, but even knowing someone read it and knows how sad and frustrated I was, helps.

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  2. Stunningly beautiful images! Yes, I can recognize "sleep giant". Hard to pick a favorite because each one of them looks so well done!

    Nothing is more suffering than living with chronic illnesses. I am out of words to say, except that I still believe there is a hope.

    Another day an online friend introduced a supplement to me: Padma Basic. It's supposed to be extremely good for immune system. The formula originally from Tibet, studies by some European medical scientists and its effects seems to be widely proven. You can find good deal on Amazon. I just got mine today and will see how it works for me (I immediately decide to try because it's also good for cardiovascular problem).

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    1. Thanks for your words Yun Yi, I hope the Padma is still helping you.

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  3. Thank you for the beautiful pictures. You're a truly talented photographer. My fave is the first with the autumn leaves.

    It really, really sucks to be chronically ill and have those thoughts you shared. I know because I have them too! Only on disability, a drain on society, no friends...it's hard. Harder than hard! And no one who hasn't been through it themselves can understand. Your posts do have meaning for me and I'm sure many others too. If you want an Aussie penfriend, give me a buzz - not quite the same as IRL friends but when you're sick you have to compromise! x

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    1. Thanks for your comments Siobhan, nice to know someone else is is a similar boat and hanging in there. You are right, I don't think it's something you can understand unless you've been through it.

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  4. I am so very sorry you feel so desperate at times and I wish I could do something for you that would help. I live with this condition too and I understand, but I have not been as sick as you are for a long time. Please hold out hope that there will be some relief for you too. Sometimes it's just when we are about to give up that a change or shift will happen. You just never know when that will be for you, but I do hope it's sooner rather than later.

    I have read every one of your posts for the last couple of years or more, and I think this is the first time I have commented. My heart goes out to you and I sincerely hope for better days for you. It is incredibly difficult to accept that this is our 'new normal', but once we do, it is a little easier to work within our confines. I know how very difficult it is for you and I wish only the best for you.

    Hugs and <3 Caron

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    1. Thanks Caron, it's nice to hear that you are not as ill as you once were. I think I've stopped hoping for something to change, because I can't bear to have my hopes dashed again. On the other hand, you're right, people do improve sometimes and I'd LOVE for that to happen. I accept living in these illness confines sometimes, but othertimes (obviously) not. I hate not being able to do all kinds of things that I imagine myself doing. Thanks for taking the time to write. I appreciate it.

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  5. My favorite, ( besides your dog photo), is the swamp and the mist in the distance.
    I think you have to give yourself some credit for doing work toward your PhD, no matter how short the work time.is during a day.
    It's horrible watching the world go by. This blasted illness robs us of everything that we cherish - friendship, seeing grandchildren, travelling, socializing, following our interests and dreams. But it's the only life we have so somehow we have to drag ourselves out of the depths of despair if only mentally (because we can't knowingly do something that we'll pay dearly for).
    For me sometimes SiriusXM radio helps, there are hundreds of talk shows, something for everyone, mostly call ins, so you get a feel for the thinking of the outside world. I get it on my old iPad, could also on my iPhone. You don't have to buy their radio. It crashes often and you have to reinstall. Just a thought. Music does not help me, to much excitement for my brain.
    It's too bad more people don't comment telling you how much your posts mean to them.like the one above because I'm sure they are out there. Your writing means much to me, it breaks the isolation.
    I've followed the intentional housing movement for a long time, especially what's called co-housing. Too bad there's no place for us in a community like that, but it appears to be for healthies
    . Well, I hope a little ray of light found you today. from Leah. .

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    1. Thanks for you sweet comments Leah. And for letting me know reading this blog means something for you. I know it can be pretty depressing at times because I vent about how miserable and sick I am a lot on here. But it's nice to know my voice doesn't just drift out into space, and that there's someone out there that reads and knows about my struggles (and has even experienced similar struggles).

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  6. I meant to write intentional communities, not intentional housing. There are now intentional communities created for older people, but the focus remains on the relatively healthy elderly. . It would be wonderful if a movement, similar to the co-housing intentional communities, began focusing on people of all ages with chronic illnesses, but we're all too sick to even think of forming one. Leah

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  7. Hi please do not give up. I know how you feel when you say nobody understands how sick you feel and even if you have friends and family in your life they do not understand this illness and that can be so hurtful. Try to think of all the nice things in your life. Your dog for one. He looks a lovely dog. Animals can give great comfort when there is sometimes nothing else to hold on to. I know also when you say how hard it is to make friends when you are so sick. Hold on this will pass. All the best Jackie Dublin Ireland.

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    1. Thanks for the caring note Jackie, I am feeling a bit better now. My sadness and frustration over being so ill seems to come and go in waves. But it's nice to know that I'm not the only one.

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  8. G -- Your photos are GORGEOUS!! Thank you for sharing them with us. I'm so sorry you're having a rough time lately. I've been thinking of you and wanted to send some love and hugs and good thoughts your way. Please hang in there! There's always hope on the horizon, even if it's too cloudy for us to always see it. xoxo

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