I was woken by heart palpitations and tremors at 4am; definitely not the way I prefer to start my mornings. I took some 5HTP and went back to bed, sleeping on and off until 7am. I felt very sick, shaky and with a bad headache, and I was somewhat surprised to be feeling so much worse after feeling better last night before bed. However, by the time I had showered and got ready I was feeling quite a bit better, and was hopeful that this would continue to improve throughout the day. Once we had made it to Infusio, I headed straight to the Penthouse and Dr Kim came to check up on me. She is the kindest, most caring doctor I have ever met; she said that she knew I never complained, so when Hollis had said I was struggling she knew I must be feeling really bad. That was so lovely to hear; when you’ve been sick for such a long time, it can be easy to feel like you’re always complaining and perhaps coming across as negative when you keep having to tell people that you still don’t feel well, so hearing Dr Kim say this really made me question this assumption for the first time. Between the time I became ill and when I finally got diagnosed with Lyme Disease, I spent eighteen months being told by countless doctors and specialists that I was not as unwell as I felt I was, and that there wasn’t anything seriously wrong with me. Even though I of course now know that they were wrong, those feelings of self-doubt and like I was making a fuss or over-exaggerating have stayed with me and played a big part in shaping how I feel about myself and my illness. Throughout the time when I was undiagnosed, I often believed that I was unwell because I was physically and mentally weak, because I was somehow making myself sick, or because I was unable to cope with what should have been manageable health issues, and by the time I was diagnosed with Lyme, those feelings were already deeply ingrained. Since coming to Infusio and being able to talk with the Lyme-Literate Doctors and other patients, I had started to understand and accept the reality of what having Lyme Disease really meant, and started to come to terms with what I had been through up to this point. Comments like Dr Kim’s were helping me believe for the first time that actually maybe I wasn’t weak, in fact maybe I was at least in some ways strong for dealing with everything I was going through, and it felt really good to hear someone so knowledgeable say that she considered me to be someone who never complained. I was beginning to realise that although I had come to Infusio to heal my body, the experience and environment was also helping me make steps to start accepting my illness, and thus start emotionally healing too.
Although I was scheduled for IVs first thing, Hollis was delayed with a car problem, so an agency nurse was in charge of getting everyone hooked up. I was still feeling extremely sore, hypersensitive and swollen, so I was a little nervous about someone other than Hollis being able to get my IV started for me. The nurse was absolutely lovely, but really struggled to get a vein, so by the time I was started on my first IV it was nearly 11am. I was having a bag of NAD first thing to hopefully revive me a bit and give me some much needed energy. I sat outside on the terrace and was so relieved to be able to be feeling mentally a bit more like myself. I was able to talk with other patients, and I was beyond thankful to be finally feeling a little less nauseous. After the NAD, I started on the two bags of detox IVs which I had been doing every day since Monday, although the nurse explained that today they had extra sugar in them, to try and keep me better hydrated and hopefully allow my veins to hold up. For the first time in a few days I was feeling well enough to eat lunch, and Alex went to get me some food from Panini Kebob, a café just around the corner from the clinic. On Hollis’ recommendation, Alex and Kenny had eaten lunch there pretty much every day, so I was happy to try it, and I had rice with roasted vegetables which was delicious, yet plain enough to settle my stomach and keep the nausea at bay. We ate outside in the sun, and in comparison to yesterday I just felt so happy to be feeling human again. It’s amazing how much a couple of bad days can really dent your spirit, and I was so grateful to be reminded that my body was capable of recovering from a setback, and what a difference a day can make.
I was able to get through the IVs quite a bit quicker today as I wasn’t feeling nearly so sick, and after the last glutathione bag I was straight into the Nova Bed for fifteen minutes. I was starting to find the sessions a little uncomfortable as I was so incredibly sore and swollen from all the IVs and withdrawal reactions. Lying on the hard and hot surface was causing me a lot of discomfort, so I was grateful to get it over and done with for another day. I then had only the thymus shot to do, which was a lot less painful than yesterday, and I was finished. Before I left I spoke with Caryn, and told her that we were moving our flights so I could stay for another week of treatment. She is the most genuine and compassionate soul; although she isn’t part of the medical team, as she is in charge of looking after you whilst you are in the Penthouse, you spend so much time around her and she really takes the time to get to know every patient. She told me that she was praying for me because she could see how much I needed to get better and could feel my desperation, and I ended up shedding a few tears at her kindness and perception. I should have known by now that I couldn’t possibly get through a day of treatment this week without something making me cry! I was able to walk back to the hotel today, and we had our usual catch up with Gena and Kenny on the rooftop with a ginger beer. I couldn’t believe they would be leaving tomorrow as I couldn’t imagine going through another week of treatment without Gena by my side. We ordered from the Thai place for dinner again, and I ran a bath to try and relieve some of the swelling, whilst Alex changed our flights to extend our stay. After watching some more Junior Masterchef (obsessed!!) I was able to get to sleep, encouragingly for the first time without having to take additional 5HTP.