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.
Last 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.