I have decided that I have to start writing notes to myself about my daily struggles with Lyme Disease. I want to remember the details of my bad days and the range of symptoms that I suffer from. My memory is bad so the only way to do that is to write it down. When a symptom eases I second guess myself and assume that I was just over-reacting. I just assume that my suffering wasn’t as bad as it really was. I want to ensure that I stay committed to the Lyme Disease Awareness campaign even if I get better. So this is a way for me to document my struggles and make sure I never forget about my fight those who are still struggling.
The last few days and weeks, have been horrible. I usually wake up with acid in the back of my throat which means I don’t have much time to get to the toilet or a bucket before I throw up. If I’m lucky, I have time to take a fast acting nausea wafer. Even if that works, it doesn’t stop the stomach pain. My stomach muscles hurt from always contacting, and nothing helps stop that. I also wake up drenched in sweat. Every doctor I have seen knows I’m sick just by my constant fever and sweating. My body is trying hard to kill the bacteria with heat but it’s not working. This often turns into sweating with chills and severe shaking. The shaking also comes with large body jerks that feel like an electric current has been sent through my body. Then there is widespread body pain. The pain ranges widely including deep aching bone pain, throbbing muscle and tendon pain, and a burning skin sensation. There’s also headaches, teeth/jaw pain, painful muscle spasms and widespread weakness that leads to collapsing. Every part of my body is affected. My ears have ringing, my nose is overly sensitive to smell and my eyes are often too blurry to read. My whole body feels like it weighs a tonne and that my chest in particular has got bricks sitting on it, making it hard to breathe. Even if I can breathe enough, the feeling of suffocating, commonly known as air hunger, is really distressing.
The physical symptoms only scratch the surface on bad days. I used to consider myself to be smart but now I can barely put a sentence together. I forget even the most basic words and often don’t pronounce things correctly even though I know how to. Thinking alone, is extremely hard. All thoughts and memories feel like they’re behind a thick fog and the harder I try to get to them, the further away they get.
Then there’s the emotional symptoms. My bad days consist of cycling through depression, anxiety and irritability. The hardest part is that I’m aware that I don’t feel like myself but I can’t change the feelings and reactions to people. When I’m like this I try to stay off social media because I can accidentally get angry at people, but most of my support is online, so it can be a catch 22.
When people read about what I go through, I often have people judgementally saying “why do you paint your nails then?” or “why do you foster dogs then?” The answer to that is simple. I still deserve to enjoy life and those are the things that I get enjoyment from. I have had so many things taken away from me so I want to hold on to these, even if my energy is depleted by doing so. Fostering also gives me purpose and without that I can feel as though I have nothing to live for. Purpose and hope are what get me though the hard times.
I hope you gain some insight into my life from these sort or posts. Just be mindful that I don’t want pity, I just want understanding and support. I have tried to remember most of what I go through on bad days but I know I have forgotten things. I have also left out some symptoms I find too embarrassing to write about. I do hope that my treatment will start to work soon and that I will be free of suffering, but Late Stage Neurological Lyme Disease is hard to conquer. Kind words of support are always appreciated and help me to stay positive. There is always hope in life x