This year I’ve arranged for saline IV’s. As I have a hard time tolerating any medication, and I’m not improving enough because of it. Saline IV’s seemed to be the best solution to help with my orthostatic intolerance or rather my postural orthostatic tachycardia syndrome. What could go wrong with a bit of water and salt, right??
The update.
To start this blog off I want to thank the mother of a friend of mine. Without her this would not have been possible as it seemed to be extremely difficult to just get saline IV’s without any additional stuff included that’s administered at home. In my current state making phone calls is not really my forte and neither is writing a lot of emails in a row. It took a lot out of me. So this was just fantastic to have someone helping me out. She moved a lot of mountains to get this show on the road. Incredible. Thank you again “mother of a friend” for being such a sweet friend. You are amazing. You know who you are!!!
I knew this would be difficult for me. After my relapse in 2013 I started to have problems with tolerating people in the same room as me. No energy to process the presence of someone nearby. In 2016 this took a turn for the worst. I was living in an old house and my upstairs neighbours were extremely loud. They had a little kid running for hours on end. I couldn’t process the noise. It resulted in me being in one post-exertional malaise crash after the other. I went from being able to cook for myself to being bed bound. Even just having someone coming inside of the house for a few seconds without me seeing them would make me worse for the rest of the day or even several days. I ended up having no social interaction for about 11 months. I didn’t see anyone, call, Skype. Just short messages via WhatsApp. Avoiding any sound and light. Really extreme.
Once we installed a sound isolation cabin I improved a bit again and since I moved to a new place things improved even further. These are very small improvements and sadly the physical part hasn’t caught up but I am able to read and write a bit more. This year I even had 4 visitors (that excludes doctors etc.) as opposed to one in 2016.
The IV virgin.
My first IV was exciting of course. My best friend Frans, who’s also my carer and superhero in one, let the nurse in. She prepared the IV in the living room with the bedroom door closed. Trying to conserve as much of my energy as possible. Frans explained to her not to talk or be too energetic.
They both came in and Frans opened the curtains a bit and I covered my eyes with a t-shirt. She hung the IV fluids with a cloth hanger on the clothing rack next to my bed. Very Anil chic. She was super friendly and quiet but it was soon clear my veins were nowhere to be found. Having no muscle tone from inactivity, a darkened room and a dark skin was not helping. She was tapping on my arm forever, turning it around, looking for a better spot while Frans was holding his phone with the flashlight lit. So there she started talking. Listening for some reason is extremely heavy. My body starts producing even more lactic acid. Stiffening up like an ironing board in bed. My whole body deprived of oxygen. So obviously not a great feeling but I was laughing it off. Keeping it light.
She managed to insert the needle in one go and that was that. She turned on the IV and they left. It only took about 10 minutes, but for me, with 2 people in the room so close, it was very intense. It felt like running an uphill marathon while lying in bed. But as I rested up the days beforehand and I managed to not be in a crash that day the recovery “only” took about 4 days. The issue is that the IV only works for 2 to 3 days so it was hard to really experience what it did exactly. I did however feel like I was more clear headed than I normally was during a big crash. Like there was oxygen reaching my brain for the first time in 10 years. On top of that I normally never tolerate medication. I can only up any meds with a small crumb. Max 1/32 of a pill. The IV went remarkably well. So it was worth it to try this again.
Take 2.
The following week another friend, who’s also a superhero, opened the door for a new nurse. He explained to her in the living room what to do and once she came in she was trying her best to be very quiet. Very sweet. We turned on the main light this time. I covered my eyes with a cloth but she couldn’t find my veins either. Tapping on my arm like a bird does to get the earthworms to come to the surface had been to no avail. A failed worm charming or in this case a failed vein charming. Of course she started talking about it and I removed the cloth. Way too much light and more talking.
She climbed over me to get to the other arm. It was the first time since my relapse that I had someone this close. So intense. She went on with the vein charming and then started some small talk to probably make me feel at ease. I have no recollection of what she asked as it was a total blur. But while talking she laid her hand on my arm and moved a little closer with her face. I had to remove the cloth from my eyes again. So there was the light, her face close to mine. Me needing to process her facial expressions, her perfume and the touch of her hand on me. I was in overdrive. I wanted to scream but she was so sweet and she tried so hard. I mumbled something and hushed me not to talk…Luckily my left arm had an eligible vein to penetrate. Thank God that part was over.
With Frans we try to keep the visits short to not provoke any hard crashes. He either just quickly waves around the bedroom doorpost or he comes in and says a few sentences which is already quite heavy. So I always ask him to reduce our conversation or him coming in. Preferably just once. For me having someone come inside of my room feels a bit like that feeling of being on stage or giving a speech in front of a lot of people. Or a feeling of needing to move a big and heavy obstacle. An overwhelming feeling of needing to push for a big exertion. It’s a very unpleasant and intense feeling.
For me having someone come inside of my room feels a bit like that feeling of being on stage. An overwhelming feeling of needing to push for a big exertion.
Weirdly enough I’m not stressed myself. I am a super social person. I normally love having people around. I’m not scared of people, my friends or the nurse. Just my body does the opposite of what I want. It feels like my body is not able to expand the energy that’s needed and in order to compensate for the lack of energy, my body therefore produces a surge of adrenaline to be able to deal with the situation. Which obviously is not helping. I tried different drugs to mitigate the problem and that feeling has recently improved somewhat since I upped on a drug called Mestinon (I will blog about that later). One thing I can tell you though is that it’s extremely annoying and it zaps away all your energy very quickly.
Anyways the nurse forgot the tape to fix the IV so she had to get it. After that, she collected all the rubbish on my bed and she left to dispose of this in the trashcan in the kitchen. I think she came into my room about 6 times in total. So that’s 6 times of enduring that big push feeling. Oh fudge. I was so super wasted after that meeting.
This time the crash was huge. It took about 7 days to recover. It really felt like some outer body experience. My body fighting to recover but not finding the right fuel to do so. Walking from my bed to the kitchen felt like being a tightrope walker or rather shuffler getting from the roof of one skyscraper to the other on a body full of lactic acid. Terrible! On the positive side, the IV was again making me feel a bit clearer in my head rather than normal during a crash but again the crash was harder than the benefit of the IV…
Third time’s a charm
The third time I had the other nurse again. I wrote down a few instructions. Maybe things would go smoother. No talking, no touching, to come in only once etc. Oh man…isn’t this disease ridiculous!!! The bag with the IV fluid went back on the clothing rack and she started tapping. She inserted the needle but the IV wouldn’t run. Nothing happened. It didn’t drip. So we started to communicate with regards to this problematic issue. She tried for the second time, but probably missed the vein. That didn’t help. She moved to the left arm. Again a missed hit! At a certain point I had 1 needle in each arm and a third that she pulled out. Blood started spurting out from my vein over my bed. Too freaking bizarre. In hindsight a funny situation but at the time I was again feeling like my bed was on the same trajectory as a rollercoaster.
She thought that maybe the mechanism of the IV wasn’t working and went to look for another one in her car. When that didn’t solve the problem she went for a fourth and last try. This time it worked. That visit took about 25 minutes in total with a lot of talking and also light. Omg…It was really a traumatic experience! I felt so bad for her as well. She really tried her best. I could see that she was stressed out because I was getting worse by the minute.
It took me about 2 ½ weeks to recover. The crash was even harder than it had been the last time. I had no choice but to cancel the following 2 appointments. It was impossible to feel up to it. I was simply too ill. This is also exactly what happens with me during graded exercise therapy. Instead of me improving, I worsened and the crashes became longer. Obviously extremely frustrating as well as disappointing as I do feel the IV’s have benefitted me.
Square 1.
Another possibility would’ve been a PICC line but getting my butt to the hospital is a bit of an issue. I mean I had to recover 2 ½ weeks from this last date with the nurse while I absolutely did nothing but lie still in bed. So you can imagine what will happen if I have to go to the hospital. We tried to find someone to administer it at home but that seems to be hard to find and it would need to be cleaned on a weekly basis so I would still have to deal with visitors.
I came to the conclusion that with me becoming so increasingly ill from having someone in the room instead of feeling a small improvement from the IV itself, that it was unfortunately not worth the pain. Out of experience, I know it’s better to listen to my body, not to push through, because it would only result in me getting worse.
Clearly this damn disease is hard to deal with for everyone involved. It’s never plain sailing. I was sad about it though. I finally found a treatment my body seems to be tolerating as normal medication, however it’s too hard to build up and there were some benefits with the IV. Yet this time I can’t handle it because of some weird issue with having someone around me for too long…
So that’s it. No more IV for me. Would I recommend this to people with ME and especially people with orthostatic intolerance issues? Yes for sure. Sadly not many doctors are aware of the benefits or have a hard time understanding this disease in the first place. I hear of quite a few patients who are being laughed at for even suggesting it. Quite sad. Hopefully they’ll read these type of blogs by patients and I really can call myself lucky with my current GP.
What has your experience been with saline IV’s? Please let me know in the comment section down below.
Groetjes,
Anil
editor: Russel Mohan
