When is enough, really enough?

I’m having a rough month.
It could go well into two or three months.
I have tried everything, everything.
I feel like I’m back to square one with the symptoms that haunted me at the beginning.
I visited my Gastroenterologist, after his month vacation, and told him that I’ve lost the five kilograms I put on, am in excruciating stomach pain, have constant nausea and am not responding to any medication.

I am tired.
I am tired of going backwards.
I am tired of telling him that I’ve gone backwards.
I am tired of explaining to people why I am “still sick”.
I am tired of being the guinea pig for a range of medications that are not making me feel any better.
I am tired of being told that I have this stomach disease, but am unable to manage it.
I am tired of my body being so fragile.
I am tired of paying Specialists money, and walking out feeling the same.
I am tired of wondering if something has been missed.

I didn’t mean to take it all out on him.
It kind of came out like projectile vomit.

But, he apologised.

I thought he’d then wipe his hands clean of my case, but he rewrote our action plan. New medication, one more test to make sure we haven’t missed anything, bloodwork and even a possible reference for a Neurological Gastroenterologist somewhere in the inner city.

The medication isn’t helping, and I still feel absolutely crappy, but I dragged myself out of there and said “thank you for helping”.

There is no manual to tell you how to handle a Chronic Invisible Illness. (Note to self – write an Invisible Illness Manual).
It’s all about trial and error, and taking chances/trusting complete strangers with your body. What is wrong? What is right?
I wish I knew.
It would have saved me many nights of excruciating pain and trips to the ER and Doctors.
You see every Specialist you are recommended to, you take every test, you try every medication and you even resort to trying out those people who “worked miracles” on your friends and family, in hope that they’ll be your knight in shining armour.

But, I keep coming up with blanks, and I’m sick of it.

When do I put my foot down and say, “I refuse to do this”?
No more appointments, no more referrals, no more medications, no more “have you tried this/seeing this person?”, and no more tests.
How can I manage something that currently cannot be managed? (And not by choice – my body is unresponsive to everything we have tried).
Do I keep pushing myself/spending money to see Specialists in hope that someone will find something different?
Will I ever find management or am I running in circles? Am I making myself more unwell by obsessing over the unknown? Over management that seems to be nonexistent?
When do I find peace?

I am surrounded by the darkness of this illness.

My life is my illness.

I cannot enjoy the company of friends or my loved ones, graduation, a career, driving, walking… without feeling these incredibly debilitating symptoms.

And, the sad truth is that nobody really cares.
Your Specialists take your money and send you away.
Your Doctors pump you with medication, painkillers, antidepressants.
The Government just want you back at work.
The ill just want to play a game of who is suffering the most.
Your friends aren’t interested in your sob story because they have bigger things to worry about than you being ill.

The bloggers like your post within two seconds of posting it, (almost never reading) but your stories are never really HEARD.
Your family have had enough, and just want you to be the person you were… “Normal” again.
Your partner is under immense pressure because they have become your fulltime carer/financial aid/transport/nurse, instead of lover.

Wouldn’t it be more simple if I just disappeared?
When is enough, really enough?

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46 comments

  1. I wish I got magic powers to say, Heal! Damn it. I am sorry you are going through this horrible illness. Sorry about your lousy friends and family and the government. The specialist too. Hang in there, there is somebody out there who cares.

    Liked by 2 people

  2. You’ll find peace when you allow things to be as they are (good or bad). When you feel an anxious thought coming, try this: watch it, but don’t judge it. Allow it to be there. This way, you are breaking the link between your thought and emotion and are creating inner space. You are surrounded by all the love and help you need. Always. Namaste.

    Liked by 1 person

  3. Reblogged this on Invisible Pain Warriors and commented:
    When I read this, I almost felt as though I had written it myself, or if it had been transcribed from my own thoughts. I believe almost every person suffering from an invisible, unmanageable, chronic illness has felt this way at some point. It shouldn’t have to be this way and, in a both comforting and tragic reality, we are not alone.

    Liked by 4 people

  4. This post is really sad 😦 I’m fighting with depression, and I feel similar. It sucks, you see doctors, you take medications, and it still feels like they don’t do anything for you. I don’t know what to say except the fact you’re not alone. Even though my ilness is different, some of the things we have to deal with are identical. Hang in there, it’s never going to be fine, but it’s maybe gonna get at least a little better ❤

    Liked by 4 people

  5. I am sorry things are so rough. I often talk to you in my head and I feel like you are with my daughter and I on our trials and tribulations. She put on a few kilos and I guess with my great optimism and no doubt a strong case of denial, I thought this gastroparesis was going to be a thing of the past. Maybe not go away but get managed. So, I moved onto trying to get her vocal nodules sorted out. These have been caused by a mixture of shouting, straining her vocal chords and acid reflux. The news hasn’t been good and so she has weekly speech appointments about an hour’s drive from home and she is angry. She’s staged a few hunger strikes. Screamed. I get it. Believe me given my own health issues, I get it but it’s so different being her Mum and being the bystander instead of the sick person. She had been very depressed and I hear your sentiments in what she says too although she’s not doing too badly. She’s just at that early just diagnosed I want to blow up the world stage. Hang in there. I don’t know why you are going through this…and my daughter as well. She’s not happy having something rare. Anyway, take care. Love & blessings, Rowena

    Liked by 3 people

    1. Lovely to hear from you Rowena. I’m happy that she is at least feeling okay With her stomach.
      I wish there was a cure for it. I am desperately trying everything, with no success. I can’t understand what I am doing wrong. I’m booked in for another Gastroscopy next week with my Gastro performing it. I doubt they will find anything. Gastroparesis can’t exactly be “found” on this test.
      I have the acid reflux thing going on now too.
      Hopefully there is a cure one day for the both of us. She is kind of lucky – your daughter, I mean. I am hoping that by the time she is my age, and marking her spot in this world, there will be management or a cure. Tell her to hang in there. If she ever needs someone to talk to, I am here! I really do understand.
      Ihope you are feeling well also xx

      Liked by 2 people

      1. Thanks, knowing you certainly helps keep me going. It breaks my heart hearing her get so upset and asking the same questions I have asked and you have asked. It’s not just self-pity asking: “Why me?” when it is something rare, at least for me, it just makes me even more angry. After all, we could have won Lotto rather than getting a super rare disease! Also, someone might have a few ideas on how to manage it better.
        We have had two suggestions. One was the chewing gum to speed up digestion and the other was that constipation can cause gastroparesis. He could feel a bit of a blockage in her tummy and so he recommended a laxative. My GP has also given a form for a scan or some sort of image to see if she’s blocked up. Have been running around so much, I haven’t got there yet. She drinks Fortisip drinks, which I get from the chemist and they are great. She wouldn’t be functioning without those.
        I spoke with her teacher yesterday and the cheeky monkey wasn’t concentrating in class and then he noticed her sagging in PE. She told him that I’d given her no lunch and that she hadn’t eaten since lunch the day before. Fortunately, I help out a lot at the school and he saw through that and checked her bag. Hello! She wonders why she is having trouble making friends. Breaks my heart but I also get frustrated because she doesn’t help herself but then she gets pains from eating and it goes round in a vicious cycle. I feel like lying in a little boat and just drifting out to sea for a few weeks. I know it wouldn’t be smooth sailing but in my dreams it’s so peaceful. I went to Monkey Mia many years ago and there is a salt lake there like the Dead Sea where you can just float and it is so incredibly relaxing and healing. I’m off to have a nap and I think I’ll start dreaming of being there again. Take care and hang in there. Love and hugs,
        Ro

        Liked by 2 people

  6. I know a lot of people dealing with this feeling of going round in circles at the moment and being utterly frustrated. Doesn’t necessarily help when you’re in it, or make it any less heartbreaking, but you’re not alone!
    Please keep trying, well done for making it this far and well done for putting it into words x

    Liked by 2 people

  7. Really, I also felt as if I have written these lines about myself that is why I’m reblogging this post. I also have enough of these docs and specialists who take money just give us more toxins in form of medicines and then blaming us for not doing exercise and other such things. They really don’t want to spend time on such complex cases. So they just lecture us about exercise, meditation, psychotherapy and other such things which we have already tried. But they will never stop writing tests and medications in vain. I guess we have to take charge of ourselves and decide what is good for us. We all are together in this search, helping each other because only we understand each others.

    Liked by 2 people

  8. Boy do I hear you! We’ve had some truly awful specialists. I will mention that I haven’t read all of your posts.. and your illness is not mentioned.. Have they given you a diagnosis? I’ve seen the gastroenteritis or was it paresis? Here is what I can tell you. My son’s condition is pretty rare.. and hard to diagnosis, mainly because MOST doctor have NEVER heard of it.. even “specialists” in the field. You saying that they don’t care is right on target. That is what it took for us to finally get help. And none too soon. He almost didn’t make it. It took me still fighting to get REAL help to get something done. Don’t stop fighting if you feel you aren’t getting the care you need. We don’t fight hard enough for ourselves. Our “care” providers.. should do exactly that.. care.

    Liked by 2 people

  9. I certainly read this before I liked it. I also certainly feel for your pain. I genuinely wish there was something I could do for you. I genuinely hate having any kind of stomach pain and just trying to imagine what you are going through is like torture. Please, I know I can’t do much but if I can I’m available. We’re here for you!

    Liked by 1 person

  10. I read your blog, fully, because your words are my thoughts somedays. I wish I had the answer as to when to call it quits, but it’s different for everyone. I quit on finding a diagnosis too many times to count, especially when I was younger. Now that I’m older, I see my body slowly shutting down, and I refuse to leave this earth until I know why. Maybe I need validation, I dunno. But just follow what your body is telling you to do. It won’t heal you but it’ll probably make you feel better emitionally.
    I’m truly sorry life has been so rough. I hope you have some relief soon. Everyone deserves a good day now and again at least, especially you. 💙

    Liked by 1 person

    1. You are always so lovely. I am in between finding more answers and just losing my mind. I guess I will neve rlive “normally” until I can manage this. It is extremely frustrating. I hope we both find the answers and management that we seek!
      I said this to someone earlier, but I am happy to have you/the regular bloggers back on here! ❤

      Liked by 1 person

      1. Thank you. I’m glad everyone is back too, sadly I missed everyone.
        I think the hardest part in waiting for a diagnosis comes just before and just after testing. The constant questions left open and the tests themselves are hard enough, but the possibility of being let down once again is heartbreaking. However, in not knowing, we can’t truly treat the problem. So it’s tough either way. I hope the answers you’re waiting for come sooner rather than later. I’m back finalizing testing this week and next, which will entail a huge post I suppose but we’ll see.

        Liked by 1 person

  11. Please don’t do anything you may regret. I can’t understand how you feel, but I do understand chronic pain. Celebrate the good ones and may God bless you with a diagnosis and pain relief.

    Liked by 1 person

  12. I’ve been there, when you feel like there’s no point in trying anymore, there’s no point in anything. This happened to me last summer, and I actually took some “time off.” I decided I wasn’t going to see any more doctors or try any more “alternative therapies” I stopped my current treatment plan because I felt like it wasn’t helping. It took me 8 months, but I finally got back to a place where I felt like I had the will try again, after so many failed attempts at different treatments. Sometimes you need to go into your shell and take a break from everything and everyone, (I’m not saying it has to be 8 months long), but a rest can be good.

    You just have to survive, things may not get better right away, but they will get easier, because you will get stronger. The human spirit is uniquely indomitable.

    Liked by 3 people

    1. Can I ask what you did when you stopped everything? I am at that stage. I have a diagnosis but it could be a misdiagnosis. I don’t want natural or western medicine. I just want to stop and breathe for a minute. Everyone is so focused on pumping my stomach with things… maybe it needs a break too.
      You are incredible. I have no idea how you have managed. I only hope I can, in time… somehow xx

      Liked by 3 people

      1. I just got to a point where I didn’t have the energy or will to try anymore. I told everyone close to me that I didn’t want to talk about it for a while, and that I didn’t want their promises of “magic cures” (which I’m sure you get a lot of too). I kept taking medication that I was already on, because otherwise I’d have to have dealt with the withdrawal of coming off that, and it would have taken more energy, but I didn’t try anything new. I don’t even think I saw a doctor in all that time.

        It was really really good for me, to take some time, as you said, to breathe and let my mind heal. It was then that I really came to terms with the fact that my life is going to be changed forever by this.

        Expending energy on constantly having tests and seeing doctors that I would have to re-tell my whole history to, I think does more harm than good sometimes. Especially when you know they’re likely going come up with nothing new.

        It does mean accepting that you can’t get better as quickly as you’d like, but I think that’s important to do with chronic illness.

        Thank you! So are you! ❤ I hope what I've said helps xxx

        Liked by 3 people

  13. Please don’t disappear. The parade of specialists and tests and medications is tiresome, but all the information of what hasn’t worked is important for the eventual answers that you are looking for. I appreciate your saying that the doctor apologized and is continuing to work on trying to help you. I am so sorry to hear that things are so very difficult right now.

    Liked by 2 people

  14. This is all so tough. I want you to know that I never favorite your blog without reading it. I often struggle with commenting on blogs because of my social anxiety or I’m squeezing the reading in and don’t have a chance to write to you. But I always read the entire thing before I favorite or comment. I know not treating your mystery illness is tough because you’re so disabled by it but one thing people with chronic illness’s learn is that taking care of yourself is more than just doctors appointments, sometimes we wear ourselves down trying to do all the things we are “supposed to do” to get better, sometimes it’s healthier to take a break and take time for yourself so you have the energy to deal with doctors and crap. I know this will probably feel a bit like shitty advice since you likely struggle with energy constantly because you can’t eat, just remember to try and keep things in balance the best you can. Also I know it seems crazy but I really care about you. I think about you throughout my day, I talk about you to my husband. Before my diagnosis I was dealing with mystery symptoms too, I understand many of the things you are going through and so I genuinely feel for you. And as far as whose illness is worse you definitely win right now so I don’t want to play but I can relate to various symptoms on occasion and try to sympathize with the rest. I’m sorry you don’t have any answers yet. And I’m sorry you feel so isolated. Just please remember someone somewhere is hearing you, thinking of you, and caring about you.

    Liked by 2 people

    1. This was so lovely to wake up to. Thank you. I really appreciate it. It is far from shitty advice. I do need to try my hardest to balance things, despite the symptoms. I need a break from the doctors and their commentary/theories.
      I hope you are in better health today xxxxx

      Liked by 1 person

      1. I’m glad, you’re welcome. The doctors and all that come with them are definitely overwhelming, I do my best to space them out. It’s better to decide you need a break than to give up completely. And thank you, I’m lucky enough to actually be having a rather decent day. Hoping you have some decent days in the near future. ❤

        Liked by 1 person

  15. God, this one hit me hard. Ain’t this the truth. And this is what we have. You act like yourself and you can’t express your emotions because too much emotion will annoy or bother others. Everyone just wants the “normal” person they had and loved. I can’t even begin to explain how similar my feelings are to yours.

    Liked by 2 people

      1. I was about to say the same thing. I can honestly say I was never diagnosed with anything else except depression, but that was when I was younger. I haven’t been back to the therapist or the hospital in about three or so years and I’ve been avoiding it because of the sheer fact that they will try to medicate me and take my money. Whenever I went to the therapist I never felt loved. I felt like I was giving a stranger my parents money to talk to some lady about problems she didn’t care about so she can give me drugs, when I could have easily gotten them on the screen. but I know for a fact I have something mentally wrong with me. I snap easily these days over little things. It feels really nice that I’m not alone. I mean I knew I tecnecally wasn’t, it’s just as you put it before, refreshing. I really enjoy reading your posts and I enjoy the way you write and explain your emotions. I’m glad I found your blog because now I know that I’m not completely alone. Thank you for putting how even I feel in writing for me. Haha

        Liked by 2 people

      2. Oh I have been there! Except a bit different. My therapist was trying to tell me that I wasn’t sick and I was given antidepressants to “help”. It turns out that I was sick, so I never saw her again. I take anxiety medication every now and again for the bad days.
        Depression is still an illness, remember that.
        Oh thank you honey. It means a lot to me. I just write what I feel. It’s very raw and some people don’t like it, but I have received good feedback too. There are many others suffering like us. You’ll find a few of them on here! Connect! Explore! You have a friend in me if you ever need to vent or chat!
        (:

        Liked by 2 people

      3. Anxiety is what gets me. And that’s what I love about writing that sometimes it can get so raw and make some people feel either strongly about the situation or uncomfortable. It’s such a beautiful way to express emotion. And I will, I’m still new on here, but it’s only been a week or so and I really enjoy trying to explain what I feel now, it does help me a teeny bit. And thanks! Same to you!

        Liked by 2 people

      4. Oh wow you are so new to this hehe. I hit my fiftieth post yesterday. It was a bt overwhelming haha. Writing is a beautiful way of expressing ourselves and it makes it worthwhile when someone says, “i understand entirely”.
        I cannot wait to read your future works (:

        Liked by 1 person

      5. I just hit my 24th, lol. I tend to write shorter posts though because sometimes I feel like shorter ones will keep people’s attention more. Honestly I’m not sure. I could also be lazy. I’m hoping I’ll get better with my writing in the future, but thank you! Hopefully we all stay strong together, I’ll be here!

        Like

    1. Depression may not (or may) be physical pain, but it is pain and another kind of invisible illness. and I too have found it difficult around other people – if you don’t tell them about what’s going on with you, then it’s a lie or you can’t get that close, or if they do get to know you, there’s only so much you can hide. and then, like you said, your life is your illness…your friends become your caretakers instead and there’s only so much they can take before, understandably, they split…and I feel guilty for unintentionally burdening people…and other people get down because they can’t help me and it spirals… what are you supposed to do when all the treatments don’t work? when is enough enough? and wouldn’t it be nice to just be you do normal stupid silly mundane things, rather than every thought revolving around the illness… maybe try to create settings to decrease attention from the illness? like having a date night with your partner or a game night with your friends. “today is (I don’t know) poker night and no mention of the illness for the next hour, anybody who does, even me, has to increase their bet” or something… maybe try to find some silliness somewhere, or put on some good music. I don’t know. It sounds like it’s hard. But at least you’re trying. which can be difficult. so that has to mean something.

      Liked by 1 person

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