Tomorrow, May 18th, marks 4 months since I was prescribed Amitriptyline, so far the results have been quite fantastic. It has taken a month or two between my Dr and myself to get the dosage level right to ensure I wasn’t taking more than what was needed, but we believe we have finally found the right balance.
I am currently taking 30mg every night before bed. I have noticed quite a decrease in the amount of sick days I’ve been having. I mean, sure, I’ve still been unwell between now and my previous post. However, my CVS days have been much less intense and severe, they have also not been as frequent since being on this medication.
Today, May 17th, marks 15 days since the last time I was sick. This is a huge accomplishment, my body and my pay check are starting to look a bit better. I have also managed to finish some projects around the house which has been nice and fulfilling.
I am finding that my menstrual cycle is still a major trigger. I have learned to prepare myself and watch my cycle closely on a phone app I have downloaded to almost “predict” when I could possibly not be well. During these times I ensure I have plenty of anti nausea medications as well as ensuring I am drinking a fair amount of water to hydrate my body as much as possible just in case.
CVS is still such an unpredictable illness. Although I feel as if now I am going through a small remission period, there is always the chance it will come back with a vengeance as it has previously. With CVS, just when you think you have everything figured out, or that you are just starting to understand the illness, something else happens and throws you a curve ball. With this, You no longer understand your CVS cycle and have to take new things into account.
CVS is still such a monster. In 2016, just in the few facebook groups I am a part of for CVS support, we have lost 13 people due to CVS related issues. With CVS, it won’t kill you directly, but it can cause many many complications, a lot of which are lethal, and have unfortunately proven themselves to be so.
I still have my fatigue days, where even the simplest of tasks can be exhausting. I have slowly learned to listen to my body on these days and try to look after myself. I am highly thankful that My new Dr has found a medication that has been super helpful with my CVS. It has helped with my energy and appetite, as well as lessened the severity and the consistency of my attacks. I just hope that things only continue to improve.
I have been labelled as somewhat of an advocate for CVS, trying to raise awareness in anyway I can find. I am now an admin for an Australian CVS group and have also gotten myself a beautiful tattoo on my wrist of the blue CVS ribbon, it says “CVS it takes guts” and then has the year I was diagnosed (2015) I also have purchased a CVS warrior t-shirt from an online site that I plan to wear as much as I can to get the conversation going and to try and get CVS recognised around the area. Making more people aware could hopefully lead to further research into this debilitating illness and could possibly help others get a proper diagnosis as well as proper treatment and care from medical staff.