A beautiful thing about illness is the longer ago it is, the less you remember how bad it is. I had started getting used to being less sick and more functional. The last few days have reminded me what it is to be totally leveled by your illness.
Minocycline is no friend of mine. If you remember my earlier post I was on it for 4 days before I knew I had Lyme. 24hrs after coming off it because I felt lightheaded I had an allergic reaction to it.
For the last 3 days I had doubled my dose of minocycline and was really struggling with severe lightheadedness but I thought I was going to make it through. Last night I had a allergic reaction that reminded me how awful neurological symptoms really are. I sat watching the hours tick away last night while I had the same reaction I did almost 2 years ago. It felt like someone had pumped cold poison into my veins and lit my skin on fire and was scary disoriented. This attack fortunately only lasted for about 3 hours into about 2am. For the rest of the night I sat fully awake, spinning & disoriented until 6am when I caught 2 hours of sleep.
When I woke up I knew the medication was still going strong. I couldn’t put words together easily, my processing was off… I called my mother down to help me walk because I was so lightheaded I kept having to crouch to the floor for fear of falling over. As the day went on the severity of the symptoms lightened but even tonight almost 20 hours after the attack my brain is struggling. Spinning, disoriented, shaking, lightheaded…. neurological symptoms are hands down the most awful thing I have ever been put through.
After these long hours of awful symptoms, many alone, I am reminded why suicide rates with Lyme patients are so high. No one should ever be subjected to how sick this disease can make you and how alone it can leave you. With mine, I know this reaction will pass and maybe eventually people will call again. All I can say at this point is I wouldnt wish this isolated hell on anyone. There is no excuse for not finding a cure.
The other day I put up the same status on my personal Facebook and my Facebook with mostly Lyme friends. One got 26 likes and 20 comments. One got zero and zero. This might seem shallow but this is such a truthful reflection of what life is like with Lyme.
I probably have about 3 people I would consider my friends these days (non lymies). I love them very much but they are very busy with their lives and dont have time for me much. Don’t get me wrong, I appreciate literally everything they do for me and they put in whatever they can to help… but Lyme friends, they instantly get it.
Lyme friends don’t need to commiserate on the symptoms. They say “this worked for alleviating the symptoms” or they say that sucks. Others say nothing or they say well yeah I hurt too after I went to the gym the other day. What I wouldn’t give for normal gym ache anymore. I understand they are trying to commiserate but its not eve close to the same.
I wish I had reached out to others with my disease way sooner than I did. To have people who understand not only the physical pain but all the other bs that comes with Lyme are really irreplaceable at this point. From just airing frustration, inside Lyme jokes, to being able to talk to someone who faces literally the same frustrations of not being understood by your support team. Having Lyme friends is one of the few things that keeps me from not feeling so isolated from real life. Its so frustrating we cant all help each other out physically because we are all held back by the same disease but the network of people who get it is really what every sick person needs.
I havent been keeping up with my posting as much as I intended but I have a good reason. Its because I am feeling better! Now don’t get carried away I’m not back but I am feeling significantly better.
I have been able to go run errands with my Mom for 3 days in a row without getting dizzy or needing to sit down. I’ve been able to push past all my symptoms and get a TON of things done. This is probably the strongest I have felt in over a year. With this being the first week of a new protocol and a new antibiotic this was the last thing I was expecting.
I have been able to share Beautycounter with lots of new people and get safe skin care into the hands of great people. My earnings have helped me offset my medical costs. Annnnnd my non-profit is becoming closer to a reality. Its been a ton of work but with every day it is closer and closer to being real. So excited to share these two things I love! Stay tuned for more. 🙂