I realise I haven’t been posting on here much lately. I have come to notice that November usually works out to be a bad month for my CVS. I was sick for 5 days from October 31st ( which fell on the 6 year anniversary for my partner and I) to November 5th. Then again from November 12th to November 18th I had a very severe attack which lasted 7 days. I only managed to get myself to work 3 days out of 10, making things hard in more ways than one.
This is the 2nd Year I have documented an attack from the 13th till the 18th, 2 years in a row I have had a severe attack for the same duration of time, starting on the same day. the vomiting was so intense, I could do nothing but heave and drag myself towards the bathroom to gain relief from the shower or bath. My partner had to juggle work, his own injuries and of course me, All at once, Which I know was not easy for him to do. These are times when you begin to feel like a burden to others. You really begin to curse yourself for not feeling better, Or being able to deal with this monster in a way that doesn’t affect other people. However in a perfect world, I wouldn’t have to deal with it at all.
There are so many basic things that some people, (myself included) take for granted. For example; being able to shower yourself, dress yourself, standing upright and being able to eat or drink are just a few things I am unable to do during an attack. I even find it hard to speak, At times being completely unresponsive when being asked questions by family or medical staff.
Once again the vomiting was relentless, the abdominal pain was almost unbearable and my energy levels were basically non-existent. My partner wanted to take me to the hospital around day 3 into the attack, But I opted for the radio doctor first. He arrived a few hours after we made the call, he seemed to have heard about Cyclic Vomiting Syndrome and knew there wasn’t much he could do. So he gave me a shot of maxalon to try to ease the nausea and suggested I go to the Emergency Room if this persists as there are many complications that can arise with this condition.
Once the radio doctor left, I tried to get some sleep as that is usually something that can help me out of an attack. Unfortunately for me, this time it was not the case. I lay there for what felt like forever just trying to sleep through the pain. I hate this feeling, The feeling of being poisoned. Your body violently rejecting anything and everything that is in your system, Even if you haven’t ingested anything for hours or days.
During this time I had unfortunately run out of my “go to” medication I use to try to stop an attack. My 8 mg Zofran wafer script was empty and I was in no state to get to the medical center for a refill. It’s hard during these times, you run out of the medication you need and are usually unable to physically get yourself out to replenish them, and once you are ready you aren’t able to afford them as you have had too many sick days off work. Again, making things harder in more ways than one.
November 19th 2016, Exactly one year since my diagnosis, One year since I was told there was no cure, One year since the reality hit that this illness was something quite serious, and it isn’t going to be going away anytime soon. This was something I could potentially be stuck with the rest of my life. Although I have come a long way in my CVS journey so far, I still have a long way to go.
I have become overly frustrated with the lack of knowledge about my condition, It has made treatment and also acceptance quite difficult when needing medical assistance. It has also impacted my own knowledge about what is going on with my body, as I am learning most things from other CVS warriors. However on the 6th of December, I made an appointment with a new doctor who is still fairly close by to where I live, I couldn’t believe how nervous I was going in to discuss everything. This doctor however seemed highly interested in my condition and listened to what I had to say. He was also asking questions which made me aware that he had some knowledge on CVS and seemed willing to help. He discussed with me that he wasn’t too knowledgeable about the medications available, And then he mentioned that he was going to discuss my symptoms andoptions with other doctors who are involved in neurology and Gastroenterology to get their opinions.
It does bring some comfort and relief that I seemed to have found a medical professional who is not only knowledgeable but most importantly interested and genuinely caring about my condition. I am hoping this is a step in the right direction, It’s too much of a coincidence that I had a 5 day attack on the same day 2 years in a row, It has prompted me to keep a third journal for next year documenting my attacks to see if there is a particular pattern.. I have said it before and I will say it again, this is a constant learning process. There is still a lot yet to be learned.