I woke with no nausea and feeling well rested which was a nice surprise, and we had breakfast in the hotel before heading into Infusio for the last day of the first week of my treatment. My stomach and back were feeling sore from all the injections, and my arms were covered in bruises, so I felt it was good timing that after today’s treatment I would get a two-day break over the weekend. As soon as I arrived at the clinic I was started on the day’s IVs, and I was to receive only four bags today; Cell Prep, pH regulator, Myers cocktail and NADH. For the first time since arriving in LA the weather wasn’t great and the sun was nowhere to be seen, so I stayed inside and chatted with some of the other patients.
When I was planning to come to Infusio, one of my key concerns was having enough to keep me occupied and distracted during the long days of treatment, and to this aim I had downloaded hours upon hours of Grey’s Anatomy to my Mac and diligently packed it every day along with my charger. The funniest thing was that after all of that, I hadn’t even opened my computer so far. I had spent the entire time at the clinic either talking to the staff or other patients, and it was the most social environment I had been in for years. I felt like I was absolutely thriving being able to communicate with other Lyme Disease sufferers, and had made a couple of really good friends who I felt very connected to. One of the things that I had found most difficult and upsetting about becoming sick, was how I felt it had stripped me of so much of my identity and personality. On the rare occasion that I had been able to attend social events I was very nervous and uncomfortable meeting new people, as I felt I didn’t have anything to offer in terms of conversation and was so isolated from my peers. At my age, people want to know what job you do, what holidays you’re taking, where you go out on the weekend and what you have planned for the future. When you’re not able to do any of those things it doesn’t leave much to talk about, and it’s something that has made me feel insecure in social settings in a way I never did before my illness. On top of that, having a lot of neurological damage and symptoms has also impacted my ability to connect and talk with people in so many ways. I struggle to find words and follow conversations, and hypersensitivity often makes talking in groups physically painful. In addition, one of my worst neurological symptoms is difficulty in maintaining eye contact, which is due to a fault in brain mechanism, and I am always hyper aware that this could make me seem very strange to people who don’t know or understand that I have Lyme!
Since being at Infusio I had lost my self-consciousness about all of these things, as it felt like such a safe place with people who understood my issues completely, and my brain actually seemed to be clearer, which Hollis said was probably from the NAD IVs. It felt totally freeing to let go of this inhibition and crippling self-doubt, and allow myself to build relationships again. Of course it was wonderful to be able to talk to other patients about our experiences with Lyme Disease; about what we had been through and about the treatment we were currently going through, it felt like a really inclusive and reassuring space to share. But what surprised me the most was my ability to talk to everyone about things completely unrelated to illness. We were discussing all kinds of things; family, politics, travel, the upcoming Royal Wedding which Americans were somewhat obsessed with! For the first time in a long time I was starting to feel like I had a personality again, and like I had something to offer in conversation. It was a really wonderful feeling, and one that I hoped represented the start of getting my life and sense of self back. I actually don’t wish to go back to before I got sick, because I think I have gained a lot from this experience and hope to integrate everything I’ve learned into my life in remission, but it was so encouraging to see glimpses of my old self making an appearance. By the time I had finished the IVs it was 12 pm and we headed out to get some lunch. We decided to try Green Leaf Café right around the corner, and it ended up being a very good decision because I had one of the best salads I had ever eaten. The menu is set out so that you can build your own salad from scratch using a checklist of ingredients, which is great for someone like me who has to avoid common ingredients like tomatoes and garlic. I really wish there were more places this accommodating and with this much choice back in London!
After lunch I was called straight away for a ten-minute session in the Novo Bed, and the heat actually felt nice today as the weather was so much cooler. I was then sent downstairs for my last Global Diagnostics Scan of the week. Today for the first time I found myself glancing at the screen of the machine whilst I was being scanned, and I had a fleeting feeling of anxiety as I saw so much red. Health anxiety has long been an issue for me as a result of going undiagnosed for so long, but I made sure to catch myself and remember that I was not in a position to interpret the results I was catching glimpses of, and that I trusted Dr Kim was in the best position to use the information from my scan, and that if anything was acutely or urgently wrong she would inform me. Next up I was scheduled to go in the Hyperbaric Oxygen Chamber, which I was actually really looking forwards to. I took a magazine in to look at but I was so tired I fell asleep for the whole forty-minute treatment. The day seemed to have sped by, and by the time I was finished in the Hyperbaric Chamber it was 4pm and I had completed my first week of treatment. I said goodbye to some of the patients who were returning home over the weekend having completed the programme, and we walked back to the hotel.
I felt on a bit of a high that it was Friday afternoon and I had a treatment-free weekend ahead of me, so I suggested going to the Beverly Centre to have a look round some of the shops. However, this turned out to most definitely be one of those instances when my body just could not keep up with my intentions, and after getting very motion sick in the 10 minute Uber ride, we only managed to look in two shops and swiftly headed back home! I felt like all the adrenaline which had been pushing me through the week’s treatment had finally ran out and I was completely exhausted. I was struggling to put one foot in front of the other and I was painfully swollen and bruised from all the IVs. We ordered Sushi from Postmates for dinner and ate in the hotel room whilst watching MasterChef Junior (surprisingly entertaining!), and by 8 pm I was sound asleep.