It has been a few months since I last checked in, so far 2018 has been quite a busy year.
I’m still taking 30 mg of Amitriptyline nightly, and am starting the L. Carnitine and COQ10 supplements to see if I can further improve my symptoms. With Amitriptyline, I can safely say my CVS is already under more control than it was last year. I’m still keeping track of my days in my diary and I have noted about 38 CVS days this year from the 1st of January to the 5th of May.
My longest remission period for this year was 27 days. however that ‘good health’ streak was broken on the 17th of April, where I woke up with intense nausea, sweats, abdominal pain and a severe migraine. Again the vomiting was relentless, leaving me gasping for breath in between heaves. Unfortunately the attack lasted until April 20th and I wasn’t able to stomach anything during this time. no food, no water. I weighed myself once I felt ok and I was down 4 kgs in the 4 days I was sick.
Although my attacks aren’t gone entirely, they are much less severe than what they were. I haven’t had a hospital trip this year which is great. The attacks still render me useless, however I don’t feel quite so much like the walking dead. I’ve also found that I generally bounce back from my attacks quicker then the previous years as well, although it is still only early in the year, I hope that this continues.
You might remember from my previous post that I quit smoking last year in November. I am still smoke free, the 10th of may will mark 6 months since my last cigarette. I don’t know for sure if it has helped my CVS symptoms, but I believe it would have helped my overall health, in turn of course helping my CVS.
I have found that I have encouraged many others to also quit smoking, which has in turn encouraged me to continue. Every time I have the urge to light up a smoke, I think of my Aunty Rhonda, I think of how proud she would be of me for quitting, I think of how upset she would be if I started again. These thoughts over ride any cravings I may have to smoke. As soon as I have her in my thoughts, I gain the strength that she had, that motivation to keep going.
I went back for a follow up pap test after my surgery last year, thankfully I received the best results I could’ve hoped for. There are no pre-cancerous cells left and the HPV virus isn’t even present, meaning I’m in the clear and I’ll just need to go back in 1 year for another test to make sure nothing comes back. even though I have received this great news, there is no way I’m taking up smoking again. I wouldn’t only be disappointing myself, I would be disappointing so many other people.
With CVS, there are so many more symptoms than just “feeling sick” or “being fatigued”. It effects some things that you wouldn’t exactly expect. I hate how “dumb” CVS had made me. I find myself sometimes having bad “brain fog” where I at times forget what I am saying, even mid sentence. I forget simple things like the title of a movie I just selected to watch, or the name of a song. Even sometimes when typing, I find myself making simple grammatical or spelling mistakes which I know are not correct, however my brain just doesn’t register it at the time. This can be quite frustrating at times and also embarrassing as I know better, I was in the top english class in highschool. I can see the look on faces as I change the subject halfway through my story, because I realised I’ve forgotten what it was I was initially talking about.
I woke up a few days ago with both of my biggest triggers hitting me at once. My monthly period and also a bad cold. These are times where I try my hardest not to think too much about my illness, fearful of the fact that I will most likely be sent into another CVS attack. With these thoughts my anxiety rises. How long will this one last? When will it start? will I end up in hospital? Will I be OK? Will I even get sick or will I be lucky this time? these are all things running through my head. I just hope that this cold doesn’t trigger my CVS, and if it does, I hope its only a short attack. I don’t want to lose anymore weight, I don’t want to have more time off work. I don’t want to be sick anymore. I want to be cured.
if only it was that easy.