#8- Reality;

I remember going through the stages after my diagnosis. Denial, depression, anger and acceptance (one I am still working on). Although there is still so much to be discovered about CVS, one thing that I have learned about having a chronic illness is that you lose more than just your health.

You find yourself cancelling plans with friends and family due to “having a bad day”,  you find yourself calling in sick to work far too often. You begin to worry that they will start to get tired of hearing the same old excuse, you begin to worry if they even believe it anymore.  The feeling of anxiety arrises about having to call them and explain, and you become frustrated with yourself that it has once again come to this.

With this condition I have had to come to the realisation that at the age of 23, I have a lot of limitations in regards to what can be done. Certain job opportunities I once had high aspirations towards now became impossible due to my condition. Overnight trips away from home concern me for I fear of waking up and having an attack somewhere away from home, not only would I be away from my usual medications, I would also feel the embarrassment of being so ill in front of others.

I learned that plane trips and cruises are not recommended for CVS sufferers as they can trigger an attack. Imagine leaving for a holiday only to arrive at your destination having to spend at least a day severely ill in your hotel or hospital bed? My plans for overseas travel have basically diminished. Even smaller things like getting a new tattoo or becoming excited about an event could trigger an attack for me.

Speaking with a Doctor who has some knowledge on CVS has informed me that fertility or pregnancy could be an issue. Although as it is such a case-by-case basis, it is hard to tell which way I would go. Either I will have difficulties with carrying and can have a miscarriage up to 6 months into the pregnancy (as CVS attacks put that much strain on the body that it can trick you into an early labour). I could fall pregnant and become even more ill needing to spend most of the pregnancy in hospital. I may not have any changes at all, Or the morning sickness from the pregnancy could throw me out of the CVS cycle and in turn cure me.  It is quite a gamble really, and is something my partner and I have had to discuss regardless of the fact that we haven’t fully decided on even trying for children yet.

I have also learned that I now have limitations on what I can do in a day, with CVS comes chronic fatigue. I find even on my good days, a little bit of exercise or energy is highly draining. Some days I would leave the house with legs feeling like lead, and the second I place my small and almost weightless handbag on my shoulder, it begins to throb as if I were holding it for hours. I have found some days I’ll have some house chores to do, but once the dishes have been done and the bench has been cleaned I am already exhausted and needing rest. These are days I find it hard to not be frustrated with myself and feeling like I wasn’t doing enough, even though I was really giving it all I could.

With any Chronic illness, although we can learn a lot from others I believe it is highly important to listen to your own body. Not to push yourself too hard and to forgive yourself when you aren’t able to complete something or see someone due to illness. As in the end, We are all just doing the best we can to get through the day with a smile on our faces despite any discomfort or pain we may feel.


2 thoughts on “#8- Reality;

  1. Terrified I will never be able to have children with this illness. Period is an unstoppable CVS force for me, I don’t see how I could even stay off contraception long enough to hit the safe trying zone.
    I always thought I would wait to have kids until I was better. Now I’m getting close to 30 and it only seems to have gotten worse each year.
    They need to be diagnosing this earlier, giving people more options and understanding of what their future may look like.


  2. I know how you feel 🙂
    I’m diagnosed with CVS and all the things you’ve mentioned are pretty similar to what I go through.
    On a recent summer holiday to Portugal, I got stressed and excited. This left me being sick for most of the trip.
    I’ve also experienced the embarrassment and frustration of people who do not understand what it’s like.
    I take medication which has helped me prevent recent attacks and learning some coping strategies (quiet time, support) helps. I only get 2-3 attacks a year now.
    I do a blog/vlog Diary Of GB. You’re welcome to check out the blog page and on my Youtube channel, I’ve posted a CVS vlog. xxx
    Blog – https://diaryofgb.wordpress.com
    Diary Of GB – https://www.youtube.com/channel/UCZUN4ay7BKTuYDKLFJr2dHw
    CVS vlog – https://www.youtube.com/watch?v=a-kHW8K8qPE


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