chronic pain, my journey, vascular compression syndromes

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The few minutes I manage to escape

I am barely managing the pain level at the moment. Tremendous stabbing pain in my left flank, my bowel decided to go on holiday and another frustrating waiting. I am not even sure what is happening right now or what the future plan is, I haven’t received any satisfying answers from the doctors. In fact, I cannot give any updates for now. Standstill. I don’t often cry anymore, but the physical pain has been too much in the past few days. Along with that there is quite a lot of emotional burden as I don’t know what the future holds for me. When I say ‘I can’t take it anymore!’ it means that I am struggling after having survived three surgeries, including being on the edge of death, uncountable pain spikes, many disappointments, accumulating pain… I don’t think the medical staff understand that. To be honest, I think that there are only very few people who actually do. I don’t blame anyone for that, I don’t even care that much (as long as they aren’t close ones…). It’s ‘only’ pain, isn’t it? But, the professional staff should have a certain amount of understand for that. To live is to suffer (and to suffer is to live). Friedrich, I am afraid, I still haven’t found its meaning.
At least I haven’t lost any more weight (tho being at 39 isn’t really a success considering the fact that I desperately needed that gastro review in order to come up with a plan to gain weight).

Enormous pain. Still no weight gain let alone a proper plan. 

This morning a few newspaper published an article * on the interview I gave last week as well as a short video with a slightly misleading caption (don’t get me wrong, Bo is a wonderful buddy, but he cannot take this pain away) [this is the original one (almost)]. It does contain some mistakes and does not exactly convey my message nor the desperate situation I am actually in, but it’s hopefully a further step to raise awareness about the horrific journey we have to go through, us patients and close people around us. The pain. The illness itself, the lack of support and understanding in diagnosis and treatment. The major effect it has on our lives. It inevitably affects our studies/work, relationships and our perspectives and principles. Nonetheless, I am happy that they included the picture with my mum. We had our ups and downs, but she has believed (in) me throughout and supports me in such a way that she doesn’t even remember that she has her own life. I wanted to give up. What kept me going (and still keeps me going) was the fact that like her there are people who care so much for me. It would be too selfish to give up, my fight is also my mum’s fight, my friend’s fight, they are also waiting for that smile again. On the photo, I also wear my hempy Christmas t-shirt. I have been opioid- and hemp-free for almost three weeks now, but I am not convinced that this is the right path. The beginning of the video also reminds me of what I have actually been through, rather ironically, it does make me laugh. After the surgeries in 2017, I was driving on easy street every day. I ate just to throw up (which itself was an tremendous act as it wouldn’t go downwards, but also not upwards), I spent hours and hours on the loo, I screamed and cried, I almost died, I got kicked out of hospital, I visited a horror movie-like rehab clinic for two days, rushed with the ambulance car to the next hospitals, I was advised to see a shaman, we spent my birthday, Christmas and New Year’s Eve in a little yellow room (which we decorated of course) and I enjoyed my parenteral Christmas dinner, I screamed more and cried more… Whilst all that was going on I kept doing my maths and physics problems (still under the utopian impression I would recover in the following weeks) and read about quantum gravity, of course on pirimitramid 24/7.

At this point I want to say thank you to the people who helped me to go through this, who built me up, knew how to distract my mind and when to leave me alone. I know that I can be very difficult, that I refuse help and that I don’t necessarily show in what condition I am actually am.

DSC_0824Last night, when I was again not able to sleep because of the pain, I received a message from Dean Karnazes (after CB kindly forwarded him this post) wishing me ‘strength and endurance‘ and that I should stay strong until the day ‘we may run together’. That’s definitely another reason to stay focused and keep fighting (despite the fact that it is really, really difficult right now). But then I remember the days I was able to run through the woods in Koblenz and greet the morning sun or along the canals and the Thames under the moonlight.

I remember how lucky I was. I remember that there is a life worth fighting for. Memories are like tiptoeing on a rope, they can strengthen you, but one shouldn’t get lost when strolling down supercalifragilisticexpialidocious memory lane….

I really hope that my little journey will remain of short duration, but, (unfortunately,) everything is relative…

Currently, in M83-Wait mood.

 

 

 

  • *it’s not necessarily the arteries which crush each other;
  • I had one big surgery, which solved some issues and opened up new problems, the other two surgeries were due to complications, not to fix the initial pain; I also have some more scars than one;
  • the stabbing pain in my upper stomach was due to MALS, the stabbing pain in my left flank at the moment is due to Nutcracker;
  • I didn’t know that I live in Oval, I stayed there with my mum and Bo for a few days before I was admitted to hospital;
  • it’s nice to mention the slight weight loss within the first few months, but the current situation is much more dramatic;
  • NCS can also occur due to compression between the aorta and spine, the left renal vein can even be compressed or strangled due to other reasons;

 

We are not alone. My website is listed on Top 100 Chronic Illness Blogs post, it is worth to have a look at them.

My friend Juliet is also in quite a similar position as me, I wish her all the best that she will finally find relief soon and can live without limits! Please have a look at her blog.

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3 thoughts on “No Updates Available”

  1. In the world of ambiguity and chance we are always people who play the odds.
    I think you understand the statement better than anyone. To suffer is to live.

    But to suffer is to also have hope to not suffer. To suffer is to hope to die with as few regrets as possible. To suffer is to hope that there might be a brighter future. Choosing to suffer is acknowledgement of the value of your own life and its potential also including the value it had to others…..
    But it is not easy at all and by any stretch of the imagination…..it is really hard but it reveals how great and of importance the potential outcome that we want is!! And that it is something truly worth fighting for.
    Vita 😁
    We can change the world and make the lives of so many other people better. Now is that not a noble cause worth fighting for 😊

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    1. Sorry, I have had a hell of a marathon of doc appointments today, but I wanted to reply to that.

      Are we those people?
      I agree, but hope shouldn’t be the major driving force.
      Hmm, we don’t choose to suffer. We suffer, physically and emotionally, and we can choose to accept it.
      We can open up to it and actually pay attention, actively experience it whilst we are aware of the fact that we chose it that way. Only if you fully experience it you can learn how to let go.
      To combat suffering and the rebellion itself against this absurdity could give the (necessary/desirable) meaning…
      That’s why I agree with many aspects of Buddhist philosophy. If you want to get rid of all your suffering you have to eliminate greed, hatred and delusion. In my opinion, the latter is the most important one. In the end, delusion is the uncontrolled state of mind resulting from the distorted view we have developed. We created a tug of war by attaching ourselves to things we want (or think we want) and by resisting the things we desperately don’t want.
      Furthermore, it means that doing things out of self-interest does not only mean to act unethically, but also doesn’t help with this fight. Being grateful that the people around me or even strangers are happy and healthy, being full of (love) and compassion for them… (I can recommend the loving-kindness meditation: Do it with a close one, a stranger and an ‘enemy’, which don’t need to be persons per se) – contemplation to for short.
      My conclusion: Expect less, appreciate more.
      If one can follow this it might become pain without suffering or at least it can move a large extent away.
      It is not the desire to be well again, but the happiness and love received by others, here and far away.

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  2. One can never know unless we try. Often those who made the biggest changes to society were often called insane, or delusional but this is the burden of those who try to choose a better future. Watch over me because I will go for it regardless 😁

    No, you misunderstand, everyday one does not choose to take their own life is an aspect to suffer. To every human, dying will stop all the pain and suffering that they may feel but it removes everything else.

    We are human, we cannot be so arrogant. Hope is almost all we have. When one is under circumstance a lot of the time one does not have a lot of control of their own circumstance. So is it wrong to want better circumstances? What if its all you have? It will keep you sane knowing that there might be a better tomorrow. Hope is subtly different to greed. When the hard times come gratitude and hope will almost always to wonders for the state of mind.

    Yes i agree delusion is the worst, actually coupled with ignorance. But if something is important enough one hopes for the non zero odds. Even if the odds are against it. To be delusional is to not acknowledge that the odds are low. It is not delusional to want an outcome and want to reject others because of what it would imply…its when ignorance is involved. To not give up because its important and something you want to fight for or protect. Some things you never give up on e.g. a better life for your own children.

    I think a lot of Budhist philosophy is good on a personal level but analysing the economic and historical state one must acknowledge that there is correlation between development and the ideals of the people. They were so bound by the past and the present they did not look to the future….

    Morality is subjective, unless you choose to obey a set of somewhat pseudo axioms that really have no backing but just ‘feel right’ . yes you can almost morally justify anything because in essence it really does not exist (well one cannot prove it does).
    Do not dismiss that humans are fundamentally selfish, some more selfish than others. This is acknowledged and it is displayed in the example where a judge is not allowed to hold his role if the defendant is family. The people who we truly love like our parents i don’t think its unjustifiable to act unethically.
    Is killing wrong in all circumstances? What if it is to protect what you love? What if it is to protect yourself?
    Morality is a tough one, i’ve spent many many many hours thinking about it and still not much.

    Almost every action we take even the ‘selfless ones’ we do it cos it makes us feel like we’ve done good which makes us happy. Or you do something so you are less sad. It is not so black and white. I would say one of the few acts i can think of is forgiveness but even that can sometimes have self interest.
    One must acknowledge the existence of their own subconscious and be honest with it. One can reject aspects like I might reveal some vulnerabilities to certain people but I am aware that I am rejecting somewhat my hardwiring. Everything needs a bit more nuance to give it value to discuss but in person when i see you vita 😊

    I don’t know what this entails but i’ll look it up. It sounds like being more aware of different aspects of your character (from name) which I have been doing for years now.

    Yes I do have to take a step back to appreciate, I expect less as a sceptic. It feels I can see pretty far into the future. Appreciate the comfort and company as people come and go. Continual pain above a threshold will lead to suffering. All you can do is take means to modify a threshold and if that helps for you there must be some wisdom in it. I agree with the appreciate more, i’m not so sure on my comfort with the implications of expecting less, I think it goes against who I am.
    My path is one that focusses going forward and only looks back to get insight to take a better path 😁
    (Thats a lie but i actively try avoid dwelling but i’m working towards it)

    Hehe sorry this is so long, forgot its not text 😅

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