Now that May is over, so too is Lyme Disease Awareness Month for 2016. I want to send a big thank you to everyone who entered my Lyme Disease Awareness Giveaways for this year and thank you to all the sponsors for donating something to help make the prize worthwhile. They are all amazing brands and I highly recommend you check them out if you haven’t already. Also check out all the lovely green manis that people did for Lyme Disease Awareness this month under the hashtag #LymeAwarenessNails on Instagram.
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| What is Lyme? Source – lymestats |
I focused on various facts with my Instagram posts throughout May but I never really explained just how bad the symptoms of this disease can be. I have decided to share a paragraph with you from my submission to the senate enquiry so that you can understand what I go through.
The symptoms I have had, have changed over the years with some coming and going for what seems to be no reason. I have tried to write down all my symptoms but there are so many, so I know I have forgotten some. I have unrelenting fatigue that is not helped by sleep. I can have 18 hours of sleep and feel worse than I did before I went to sleep. I can also have insomnia for days in a row and suffer from post-exertional malaise. I have widespread pain that includes bone pain, muscle aches, burning pain when skin is touched, back pain and pins and needles. I am often left awake at night as the pain is so excruciating that I can’t sleep. My muscles are always knotted causing referred pain and tension headaches and I often suffer from migraines. Joint hypermobility causes a lot of pain in my joints, and has resulted in bursitis in both hips that is only made worse by cortisone injections. I have balance problems which means I fall over frequently and also have bouts of vertigo. My blood vessels have been thinned significantly by Bartonella meaning that I am always covered in bruises. TMJ causes a lot of pain in my jaw joint area but it also results in facial muscle spasms and pain across the whole face. One side of my face is drooping lower than the other at the moment. All the muscles in my body spasm, shake and jerk, when it is severe it seems like I am having a mild fit – this is very painful. I have had prescription lenses my whole life but since being ill, my eyesight has worsened without a known cause. When I’m feeling sicker or more tired, my vision becomes blurry and I am unable to read or focus on anything. My immune system struggles to deal with any sort of virus that I pick up and I often end up needing to take short term antibiotics to clear up infections. I have constant cold symptoms and my glands are always large and painful. I have frequent sweats and chills. Most nights I am kept up by a high temperature and I sweat through anything I am wearing. The shakes from the chills can be really violent if the sweating has been profuse. I have been treated for Grave’s Disease and diagnosed with Sjogren’s Syndrome. I have also had cortisol testing which is lower than normal but not classified as Addison’s Disease yet. Sometimes I feel as though I can’t get enough air into my lungs. It is different from asthma and asthma medications don’t help relieve it. I can take deep breaths and inhale lots of air but the air hunger doesn’t go away. I have had a lot of tests on my cervix and bladder as they are both very painful. They are inflamed from unknown causes. I constantly need to go to the toilet. Medication for irritable bladders has not worked to relieve any of the symptoms. I also go through stages of hair loss. I have lost eyelashes, eyebrows and head hair at various times throughout this illness. The hair falls out in chunks which makes it noticeable and it grows back thinner than it was before. I always have some form of rash that can be itchy or sore and my eczema has worsened. Digestive upset was one of the first symptoms as a child. I would get excruciating stomach pain randomly and doctors weren’t able to help. As an adult I was diagnosed with Gastritis and IBS. I go through cycles of diarrhoea and constipation with strong intestinal pain. For a while my vomiting caused me to be underweight until I was prescribed Ondansetron but I am only able to get 4 of these wafers a week on the PBS so it is only able to just keep my weight stable as I still have days where I vomit, when I don’t have the wafers available. I still suffer from severe stomach pain and nausea which can stop me from eating anything. I have become intolerant to many foods that I was previously able to eat without issue. My cognitive function has been severely affected. I was a high achiever through school and found it really easy to learn and complete needed tasks but this is no longer the case. I am only able to concentrate for short periods of time now, I have short term memory loss and word finding difficulties. I can’t think properly as it’s like all my thoughts are in a fog, I know they’re there but I can’t access them. Bartonella is known to affect the emotional centre of the brain often resulting in higher rates of anger and rage. Doctors have commented on how well I manage the emotional aspects, especially with how bad my Bartonella infection is, but it’s a constant struggle to do so and very draining. I currently have control of the anxiety and depression but it has taken many years, medications and techniques to get here. I own a wheelchair and used to use it to leave the house on sicker days for a while, but I had so many terrible experiences with cruel people that I now prefer to stay home than go out when I would need to use it. When my health isn’t doing so well I have to allocate my energy to the most important tasks of the day. Sometimes I have had to choose between eating and having a shower. Food is usually the priority, but after a few days showering wins out. There have been times when I have needed help to just have a shower and those times are really hard to get through.
I don’t really like talking about some of the more embarrassing symptoms, like the profuse sweating, where anything you are wearing ends up soaking wet, and the fact that I’ve had to be carried to the toilet when my legs won’t hold my weight. But if I don’t talk about the symptoms, then you won’t know. You won’t know that every single day my body fails me, and every time that it does I am upset and have to face the fact that no amount of will power will make my body do what I want it to. The one thing that is mine is my body, and it doesn’t work day after day, no matter how hard I try. It’s humiliating to admit, but this is my life.
There are people my age with Lyme Disease in elderly care facilities as they are unable to feed themselves and need help with every little task in life. There is no measure that accurately identifies the level of health of a patient with Lyme Disease. In the early stages of the illness, most people can work and study and look after their family but struggle to complete the tasks in the same way as if they were healthy. I was able to pretend that I had some sort of a normal life in the beginning but it didn’t take long for everything to become overwhelming. I am now classed as a Late Stage Neurological Lyme Disease patient where the bacteria has infected every organ in my body including the brain. I got a CD57 test to see how much my immune system had been affected by such a long term infection and my results came back as 4. Yes, you read that right – 4. The healthy range for a CD57 NK count is 60 to 360 cells per microlitre of blood. So you can see by that measure alone that my body is really struggling.
That’s why I run these giveaways every year in May. I hope to spread the word about Lyme Disease and stop others from suffering in the way that I have. The election is coming up (on my birthday in fact) and I hope that after that, the Lyme-like illness senate enquiry will be reinstated. There is no doubt that they will say that more research is needed but the vast majority of Lyme patients in Australia need a lot more than that from this enquiry. They need to legalise treatment of this disease and allow doctors to use long term intravenous antibiotics on patients as well as experimental treatments. I have acquired life threatening reactions to many antibiotics since I have been sick, so I need access to a wide range of treatment options, like what is provided in clinics in Germany, Sweden and USA. The research will help a lot of people in future but we need recognition of this illness in Australia right now, there are far too many lives on the line now.
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| Borrelia Takes Many Forms Source – lymestats |
Most people with Lyme Disease are too sick to advocate for themselves and this disease so they rely on the help of healthy people to do so. There are a lot of things that you can to do help Lyme Disease sufferers. You can research this disease and raise awareness by telling everyone you know and posting online about it. Things you should know and pass on are the symptoms of this disease, the lack of access to treatment and that the government can change that, and that preventing tick bites is very important. You can contact your local MP and explain to them how badly Lyme Disease patients have been treated in Australia and that we need change immediately. You can donate to tick-borne disease charities like the Karl McManus Foundation and the Lyme Disease Association of Australia (LDAA). Last but not least, you can help a Lyme Disease sufferer that you know. You can help by providing food (but check their diet first as there are lots of food lymies can’t eat), you can help them with cleaning or help by driving them to appointments. Just remember to be understanding with them as health can go up and down all the time. You can also fundraise for a Lymie in need. The costs of Lyme Disease treatment are huge and very few people will ask for donations even when they really need it. As a side note, for those who might ask in the comments, I am only in the early stages of looking into fundraising for me to be able to attend an overseas clinic as that is probably the only chance at recovery for me, but raising $50,000 will be a huge effort with a lot of planning needed, so it may not happen. Anyway, if you know someone suffering with Lyme Disease, there are lots of ways to help. Just checking in with them and letting them know that you’re thinking of them can also be a huge help as this illness is very isolating for many people. I hope you learnt something throughout the month of May and now understand why it is so important to raise awareness for Lyme Disease. I appreciate everyone who helped spread the word during the month of May, but please keep going, lives are at stake. I believe change is coming, I have to to be able to keep going every day. If you are also suffering, please remember that there is always hope. Hope will get you through the darkest days.
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