Tired.

My stomach is aching.
It hasn’t been this way for months.
I can feel every tiny thing that I consume, struggle to digest in my stomach.
The medication is meant to work.
Why isn’t it working?
How did my stomach just… change?
I think back to my diet over the past few days.
I must’ve slipped up, I must’ve slipped up somewhere.
But I can’t find where I went wrong.
It bubbles and gurgles away; bile rising to the back of my throat.
I sit outside for air, I drink digestive tea, I chew Peppermint Gum, I take anti-nausea medication, anti-stomach cramping medication… anything and everything.
The feeling doesn’t change.

I scroll away at Social Media, feeling further isolated from society.
Birthdays being celebrated under the stars,
Falling in love and going on romantic dates,
Exploring the world,
Working for great companies,
Absorbing knowledge through courses,
Tasting new cultures,
Engagements, weddings, children,
Conversing with friends over coffee…
And meanwhile, I am stuck here… alone.

This illness has stolen everything from me.
I am forced to cancel on people for gatherings because I am too unwell to attend.
I feel an anxiety when my symptoms are at their worst – I feel embarrassed to be in public. I feel embarrassed to feel nauseous, and have to hold onto someone for balance support.
On the other hand, people let me down too.
They aren’t willing to negotiate. They don’t understand that I’m unable to do “normal” things anymore.
If you’re too sick, then don’t come because I can’t put up with it”
“Lets go for dinner at this place… oh, you can’t. Maybe you can come with us when you are better”

Is it selfish of me to ask for these people to squeeze me into their routine, and alter the program a bit?
So, I can’t go out for dinner or ‘out’.
I can’t move from my bed.
But, you can come and sit with me for an hour?
Talk to me?
How silly, Cass.
People won’t alter their lives just because you are sick.

I was forced to stop working and studying, so my days are filled with mindless television and the struggle to walk to the bathroom and back.
I am unable to drive, and most days I am unable to look at my laptop screen or mobile.
I sit here and watch the sky change colour from dawn till dusk, and repeat.
Meanwhile, everyone is off living their lives.
I am forgotten.
My sibling works now, as do my parents. They are rarely home, and IF they are, we usually have appointments to attend. They do so much for me – their entire life has been revolved around me. When they decide to go out with friends, on days like today, I nod my head in agreeance.
I will be fine on my own, I tell them.
I lie.

Inside, I’m crying out that I need them to stay. Stay here so I am not tempted to leave.

No. They need to go. I need them to live their lives, even though mine has stopped.
On the days like this, where the depression swallows me, I picture my lifeless body hanging from the outdoor gazebo.
Why me? I ask. What did I do?
They can’t fix this, nor the Doctors.
Nobody truly understands, no matter how much I explain it to them.
Nobody understands until they go through it.
I rewrite my Goodbye letters over and over.
They are not perfect yet.
I’m tired of feeling, of being hopeful, of listening to advice, of fighting my own body. I’m tired of being told what to do, what to try. I’m tired of missing out. I’m tired of falling behind.
I’m so tired.

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59 comments

  1. I “like” how you express yourself, but not what you’re going through. I know I don’t know you, but if I did, I’d totally sit by you at have dinner there. It’s too bad people don’t get that you’d need to socialize, too. It’s so true…no one will understand, but hopefully someone can empathize. As far as social media goes, it can be addicting (and I’m thinking of Facebook now)…about a month ago I decided to stay away and I’ve felt a lot better from it. People don’t tend to be ‘real’ on there anyway, that’s one reason I started to write here…people are writing about real life (for the most part), as ugly as it can feel sometimes. The fakeness feels so isolating, even if it’s parties and wedding photos. ❤ and hugs.

    Liked by 1 person

  2. Sweetie you are loved
    We all have very hard days, nights, years
    I was alone tonight & drank more than my allowed 1.5 glasses of wine but I stay because there is a greater reason – yet to figure it out but yours will find you to
    Love mini

    Liked by 1 person

  3. I think I can understand your situation. Every situation is different of course but I am 22 and have been chronically ill for 11 years and over that time attempted suicide more than once. But there are things worth living for, that you can still experience. I live for the love of my family, hugs from my mum, the feeling of my dogs fur against my skin even when I’m too tired to cuddle him properly, the sound of the birds in the morning, the feeling of fresh air on my face and more. There are still things you can live for. Hugs

    Liked by 1 person

  4. Hon, :/ Your words are running around in my head all day, before I even see them written.

    Today, my family had a huge gathering where I live, I left and was gone the whole time, because I knew the depression of seeing them would be terrifying, my stomach would twist and turn, ache and vomit.

    So,

    I went off on my own, when my family was having a blast (I suppose) here. I walked up the mountain, that took about an hour, than I drove around and wasted time at three different libraries, after getting anxiety at one, I would go on to the next.
    I remembered I had to put my buddies dogs away so I went to his house and killed 3 hours, watching “lets be cops.” Then, I felt awkward having my truck out front of his house so long, so I left. Figuring people would still be at the party, I drove around for hours, no where to go, just killing time. How antisocial is that?

    The fear and depression of hearing all the families achievements kept me away.
    Some were getting married, I know of, others just had kids, great promotions for a few, etc, etc. I felt worse when I came home, and I wanted to pass out on the bed, I was stopped and told about how wonderful the party was and how great their achievements all are…

    Don’t get me wrong, I love my family, well I’m sure you love yours too, It’s just I know how you feel when all those things are brought up. I feel so small, like I haven’t amounted to anything, and if I can just get over this illness I can press forward and be awesome too.

    Your words bring sadness to my eyes when you are down, but smiles because you put some much into them with so much beauty. Some day Cass* I won’t say more b/c we don’t like to hear things but, it’s true, someday… I’ll let you figure out what it means. (Think wellness).

    Smirks*

    Liked by 1 person

  5. You have something more important than all that bollocks on social media: talent. You can write.

    Hope your symptoms can be got under control and that things will start to improve. Sending lots of love. xxx

    Liked by 2 people

  6. Oh, darling. It doesn’t seem possible, does it? That in this day and age, with all the much vaunted medical breakthroughs, that someone, somewhere can’t get to the bottom of your illness and actually HELP you get well. I feel you, I truly do.

    The depression aspect, the having to at least LOOK like you’re coping so other people close to you don’t worry…..it sucks your emotional energy, it swallows your soul.

    Poor, beautiful. Cass. I’d come and sit with you for hours if I wasn’t on the other side of the world. In a heartbeat.

    I know you’re in terrible pain, my lovely, talented, lonely friend. But my God, your writing is stunning. I’m rebogging this.

    Very much love, dear Cass. Xxxxxx

    Like

    1. This does not feel like it is worthy of a reblog! It is horrible in comparison to my other work! I am such a mess tonight. The symptoms are incredibly bad – so this was a little whinge for me.
      Thank you for your kind words as always. I hope today has treated you kindly xxx

      Liked by 1 person

      1. No, honey. I think it’s one of your best. It’s raw and powerful, and many of us relate to what you so stunningly describe. And too late, it’s already reblogged!

        Today has only just started (8.26am here, what time is it with you? 5.26pm on Sunday?)

        Big hugs, darling. X

        Like

      2. 540 on a Sunday!
        I am trying to tell myself that this will pass eventually. It has to. I had a good week, this is my bad one I guess. I hope it improves. It does help to write. I just hope people don’t think I am constantly whinging!
        I really am just using it as a release so I don’t lose my mind xxx enjoy your day!

        Liked by 1 person

      3. Sweetheart, you NEVER come across as a moaning Minnie! NEVER! So you can get that thought right out of you head. You express feelings that most of us make a poor job of doing, and it’s good that your words help illuminate those who are ignorant of the suffering we are forced to endure. Never stop expressing those feelings.

        And you’re right, it WILL pass, in time. Sometimes it can clutch you for weeks, sometimes days, sometimes *only* a few hours. It’s in part because our hormones and neurotransmitters are out of whack. The combination of reactive depression as we grieve for our old lives, together with the chemical depression we get from everything physiological being screwed, is a killer. It WILL pass. It always does. You just have to hang in there and grit your teeth in the meantime. And it IS a MEAN time. A bitch of a mean time.

        We’re all here for you.

        Got any cottage cheese, or will that upset your tummy more? Man, I wish there was something concrete I could do to help you. ❤

        Xxxxxxx

        PS On the plus side, if you're still feeling like this come your meetings, they will have to believe how badly your illness has affected you. No-one can fake this level of depression and despair.

        Like

  7. Reblogged this on effingfibro and commented:
    A wonderful and deeply moving post from my friend Cass. I had to reblog this. It’s such a stunning piece of writing, and captures our isolation and desperation so perfectly. Be well soon, darling Cass. X

    Liked by 1 person

  8. Sometimes I wish there was a way to bring chronically ill people together. It seems like many of us are lonely and feel as though we’ve been left behind. I know I’d find my way to you to be your company if we were close enough. I’m alone a lot so if you want a little virtual company, when you can manage to look at your screen, just shoot me a comment. Hang in there.

    Liked by 1 person

      1. It’s weird I know there must be a ton of people near me suffering from the same or similar illnesses but I tried to find a support group in my area and got no where. Funny thing, I’ve never cared much about traveling like a lot of people seem to, but the one place I always wanted to go was Australia.

        Like

  9. I know what you’re going through! I go through the exact same thing!! It’s hard when other people don’t understand… You want them to be supportive and loving, but you don’t want to be a burden. You want to help them understand, but they can’t. They always seem to make it seem smaller than it is or simpler thank it is, even if they don’t mean to.

    Sometimes I would look on the internet, hoping I would find someone like me…similar symptoms and/or problems. When I didn’t, I thought maybe it means I’m the only one…and that’s a good thing! Maybe I’m an isolated and extreme case! I’m sad to hear you suffer like I do. But, know that you’re not alone. Now we have each other. 🙂

    Liked by 1 person

  10. And I thought I felt invisible and unnoticed. I just want to go up and hug you and give you a bland chicken sandwich from out. Stomach problems run in my family and we go to places like Ram’s Horn also known by us as the Land of Bland. I hide my depression from my grandparents who would be forever freaking out and worrying if they knew what was wrong. My parents are constantly tired and annoyed with me when I say “I’m sad.” Or “I feel like crying.”

    You are not alone. We maybe as my mom calls us affectionately calls us, “electrons on a screen”, but I tell her that there are people behind those screens. We connect with one another and we are one in suffering. Peace and blessings to you!

    Liked by 1 person

  11. i had a period of hospitalization back in 2008 i think…acute pancreatitis …they took like 15 some days to diagnose both pancreas thing and the fact that it was caused by gall stones stuck somewhere…while those 15 days were spent on IV no food or water..so when they took out the stones and fixed me up..i was asked to stay away from oil for atleast a month..just boiled boiled boiled food..
    when i was out of hospital, a colleague had her birthday party and we are all sitting out in a Chinese restaurant…needless to say i couldn’t eat anything even salad had dressings and cream which wasn’t allowed …so i simply ordered juice and sat there while the whole bunch of girls enjoyed their orders….i remember coming home and and crying so much… i was embarrassed that i was crying over a simple thing…i mean it was just for few weeks..precaution…but i cried like a baby because i have had 15 days of horrible undiagnosed pain followed with a pain boiled food …all i wanted was to live like i used to…normal.. i rem those 3-4 months during and after hospitalization being the most difficult one in terms of will power…

    i cant even relate to what you are going through but i do want to say one thing when you say –
    “Is it selfish of me to ask for these people to squeeze me into their routine, and alter the program a bit?” …no it isnt selfish…its not selfish at all…i wish i could you right now…so sending you a virtual one…

    Liked by 1 person

  12. Cass I am so sorry things are so bad right now. I hope you didn’t really mean you were polishing up your good bye letter. You would be missed. Your friends don’t sound like real friends. Would it hurt them to give up a night of fun and come spend it with you? I know we are all in our own pain, but to not be able to eat and have such pain all the time seems worse. Maybe because to me food is love. It is a comfort. Be well dear Cass. ❤

    Liked by 1 person

  13. Oh sweetie, please don’t end it. I can remember feeling, “I don’t want to die; I just don’t want to keep living this way.” I’m glad I stuck with it and I’m rooting for you.

    Liked by 1 person

  14. In the lowest moments, it is hard to know how strong you are. But you are so, so strong and an inspiration. Your journey continues, and it will have a happy ending – you will come through this, and you will do amazing things!

    Liked by 1 person

  15. I wish I could do more than just type some words on a screen in response to your words. As usual your posts give voice to what so many of us experience, feel and think, yet often can’t manage to say. I am deaf, but through this page I hear your cries of anguish and pain, your sense of bewilderment at the unfairness and cruelty of life, and you simple plea to allowed to belong once more. I silently sing those same dirges every single night with you, and even though I am also drained and exhausted to the point of despair, I always feel compelled to send you whatever energy I have left because you are a beautiful soul that deserves so much to get the chance to live. I would gladly give you my life if it could heal you, Cass. I mean that honestly and sincerely. And I think it would be the best investment I could ever have hoped to make. I am sorry that life doesn’t work that way and I can’t keep that promise.

    Like

  16. You are loved and cared about, look at all the responses you have gotten to your post. We are all sending you hugs and comfort. Don’t give up, never give up. Hang in there. And don’t forget we are all “hanging out” with each other here on the internet, you are not alone.

    Liked by 1 person

  17. Stupid wordpress! 😡

    Bottom of post reblog button doesn’t seem to work. Managed it with another post by using the reblog button in the top bar instead, in the black and white bit, came back to do yours again, and although it still isn’t showing on my site, it now says “reblogged” in the top AND bottom bars! But unless I’ve lost the plot completely, or am just extraordinarily stupid, it STILL isn’t on my blog!

    Wtf am I doing wrong? Is this a wordpress glitch? I see a lot of people complaining about WP……

    I so thought I’d reblogged this 😦

    L. Xx

    Like

    1. It has definitely not reblogged. I didn’t get a notification. I have from others though. I’m so confused. Why does it work on some and not on others? I do not think it is your fault. I can’t see any reblog on your page either lol
      I think it’s wordpress. Let me ask them for you and see what they say!
      (:

      Liked by 1 person

      1. I’m having problems on specific other sites, too. The Post Comment button keeps getting obscured on one, and what I write gets covered by the bottom bar moving over my text – I have the same trouble when I’m writing a new post. Top and or bottom bar(s) hide my text, I have to keep doing the ipad equivalent of Refresh (close and re-open the keypad) and put extra lines in to drop the text from out behind the bar!

        Ludicrous!

        How ru feeling? Did u see my comment about hydrocortisone etc from earlier today? Hope it helps you 🙂

        L. Xxx

        Like

      2. It must be a glitch. I had problems a few weeks back with my page, and now my follow button doesn’t seem to work on the pages of others. I am currently unable to follow anyone in return. I am so annoyed with technology!
        Ps I just replied.
        My stomach is currently okay but I had a bad night. I am afraid about what he will say…
        There isn’t much he can do.
        I feel like I have a viral infection… That yucky feeling. I wish there was a drug I could trial to kill bacteria. Maybe that’s all I need. I feel like I have a bad infection inside of me. That’s the best I can explain it. I am fearful of this beig the end in my diagnosis. There is nobody else I can consult after this man. He is the best of the best. I may as well move overseas xx

        Liked by 1 person

      3. Did you really not get a notification, or is it buried amongst the gazillions of other notifications that you must get?

        You can check my site, is def there now, but looks like it’s been there for the duration. So you SHOULD have had a notification about it. Xxx

        Like

      4. Hahaha no I promise I haven’t yet, but it is probably delayed. I am going through them all again. I have a little reblog link that tells me how many reblogs the post received. It is probably a tiny bit delayed, I think. I can see your other reblog but not my post. It’s okay. It probably is a glitch, an annoying glitch. I’ll consult the help men later on and see if they can help. Who knows, it’s probably not you – it’s me!
        xx

        Like

      1. Well, it appears to have been there from the day I thought I’d reblogged it, so that’s defo me just looking in the wrong place.

        But you can def ask chatman for me why things keep getting obscured in my editor or when making comments, AND why the comment thingy on the excerpt page gives a HUGE typing- lag – I tried to do a comment on one of Tessa’s earlier, and it was two sentences behind! One her main post page it was fine, but not on the excerpt page, where it clearly says you can comment!

        Pls let me know what he says – I’m getting sick of obscured text! Interferes with my flow, man!

        Xx

        Like

  18. If you move overseas, you’re coming here and I’m looking after you. End of.

    There are ALWAYS other doctors. Private doctors abound. It was a private doc who identified my thyroid and adrenal insufficiencies, and started me on the hydrocortisone. I would gave died without him doing that.

    I expect you do feel virus-y – if your adrenals ARE low, your immune system will be down anyway. (Like with ALL hormones, too much can have the same symptoms as too little. You need enough cortisone to stimulate and mount an immune response, but too much would suppress it – big difference in the amounts involved in that, btw, so don’t think that 20mg or less will suppress yr immune response, because it wouldn’t. It gets suppressed at around 40mg plus)

    Big hugs, darling. What time are you seeing him? Have you written any of this down to ask him about? Xx

    Like

    1. Wait so how do I test for adrenal gland function? Or is that my thyroid? I feel bad asking him to run bloods for the one hundredth time haha.
      I am writing as we speak! I also need that letter from him for the Gov!
      I see him at 11 (if he is on time). We’ll be in there for an hour at least. I’ll email you afterwards and tell you how it goes
      xxx

      Liked by 1 person

      1. There are a few ways, none of them blood draws.

        Short synacthen test. Involves suppressing your adrenals and measuring their reaction. Shit useless.
        Saliva. Widely used, available online, too, as a kit you do.

        Ummm….some others, all require you sitting there while they test your adrenal response. I like the saliva test. There’s a hair test too. Xxx

        Liked by 1 person

      2. Thyroid can be done via bloods, ditto big adrenal hormone called DHEA. That would at least tell you if your adrenals are working well enough to produce that. Mine was always rock bottom low. Xx

        Like

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