• A different kind of NY Christmas…

    I am now 3 weeks into my treatment! I don’t really know how to express into words how hard this trip has been. I have never felt so utterly drained and empty inside… I knew this was going to be tough but I honestly don’t think anything can prepare you for how difficult this really is. It’s not all doom and gloom though! I have continued to learn more and more about Lyme disease and how it has affected my body. I understand a lot more about how chronic illness works and how the body can heal from being so sick.  I have been surrounded by a team of people who work together to push you through the pain and suffering that Lyme disease and it’s treatment brings.  It’s by far the most supportive and encouraging environment I’ve ever been in.  My symptoms are taken seriously. All of them. I have spent over 10 years being diagnosed with various conditions but not once has the underlying cause been addressed . Just to put that into perspective…I was always told I had asthma but medications would often make me feel worse and even landed me in A&E struggling to breath. I have now discovered my symptoms caused by ‘asthma’ are in fact caused by a Lyme disease co infection called babesia. Not something that can be treated with an inhaler!!  I’ve not only tested positive for Lyme disease but more than one Lyme co infection and multiple virsues. This explains so many of my debilitating symptoms including my severe gastro issues. I couldn’t believe it when my dr told me that Lyme disease can ‘live’ in the ear, and damage it. I won’t go into my rant about how puzzled I am that not one dr thought to test me for this throughout the entire time I was suffering. But this sadly seems to be a common picture for a lot of people due to the medical professions  lack of understanding.  It leads to unnecessary diagnosis’s and procedures that often leave people worse off. The NHS failed to understand the complexities of my illness more than once. Many dr’s do not understand how it can affect a person. All the conditions I have been diagnosed with this year (POT’s, gastropareis and issues with autonomic system), can ALL be caused by Lyme disease. My immune system is also really supressed which explains why I’ve spent so much time in hospital trying to fight off ‘mysterious’  infections. (sorry I ended up having a bit of a rant after all…).

    My treatment has not only involved IV anti biotics to kill off the infections but drugs to help my body detox from all the toxins that are now being produced as a result. This has been a sickening business. As the anti biotics make the Lyme bacteria ‘die off’ this  can cause what’s known as a herx reaction as toxins are released. This causes inflammation and essentially makes all you symptoms worse. Each week I have had a new anti biotic added to my treatment regime, so as you can imagine, my body is VERY angry! Symptoms that were just in the ‘background’ before treatment have now become a much bigger issue for me. This includes deep aches and pains in my joints and muscles, mainly in my legs. This makes getting to sleep very difficult. My worst symptoms before treatment, the dizziness, headaches and vomiting, are now even worse than ever. I should hopefully start to turn a corner soon. My dr is working hard to get my pain under control. What I absolutely love about this clinic is that they use both conventional and natural medicine. If you don’t want to use powerful drugs that have side effects, you can try something natural and more gentle. They encourage you to try therapies such as acupuncture to manage nausea and vomiting instead of anti sickness drugs (which actually have no effect on me at all anymore). One nurse in particular is into her essential oils so I often come back from clinic smelling like peppermint or ginger oil. This stuff seriously works! One therapy I am completely amazed at is Craniosacral therapy. My therapist is amazing and I can feel relief in many of my symptoms after seeing her. I find it so incredible how alternative therapies can have such an impact on your body and the way your body can heal. Things like diet are also massively important in the recovery process.

    Despite the gruelling 3 weeks, I had the pleasure of meeting this truly amazing lady. .. She had already gone through her 6 weeks treatment but stayed on an extra two so it was like we were destined to meet. She gave me so much strength to keep fighting through my first week of treatment. After day one I already wanted to give up! But she inspired me to keep going. She was going through the toughest two weeks of her treatment so we crossed paths when we needed each other the most. We shared stories and laughed together through the pain. It is so incredibly heart warming to find such inspiring people who can make such a huge impact on your life. Another friend who I’ve met on this journey  summed up these special friendships perfectly – ‘through tragedy in life, we can receive the very best treasures’. Yes I have been to hell and back with my health but I have also met some of the bravest, most determined and inspirational people who have become lifelong friends. The people who will appreciate the little things in life more than anything and  who understand you better than anyone. These bonds are so completely priceless.

    As Christmas approaches I find myself thinking ‘how an earth has another year gone by?!‘ , and ‘how am I still stuck being so sick….’. When you are chronically ill your Christmases completely change. It can be hard to feel festive when you put most of your energy into getting through the day.  As with any special occasion you just want to be doing what you always remember. It is a sad reminder that you are sick and unable to do what you once could. But it’s always that time of year where I can reflect on how far I’ve actually come. This year has been particularly ground breaking when it comes to my health. I’ve continued to fight . I’ve pushed for answers and haven’t accepted dr’s telling me to ‘just accept the way I am‘.  In July I felt totally helpless when I found out I had Lyme disease but everything finally made sense and in turn it all fell into place. I am now being cared for by one of the best Lyme disease dr’s out there (he IS the best in my opinion!).  To me this is the best gift I could wish for. My health! Nothing is more important than this. I have had my mum and dad by my side, holding my hand as I wobble through the snow and driving me through the crazy roads of NY. I often wonder how they put up with looking after me but they never complain and just get on with it. We work as a team and they make my life as stress free as they can. It will just be me and my dad for Christmas which is going to be very strange but we will celebrate as a family when I am home in January. For now I will enjoy the peace and quiet of our little apartment! I have got my heart set on getting out over the long weekend (I get Monday off as the clinic is closed for the Christmas break), even if it’s just for a few minutes. There is a farmer’s market next to us and a festive little park so this is my Christmas mission. If I make it, I’ll be sure to let the world know! Merry Christmas everyone!

     

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