Mourning The Person I Once was. Coming to terms with chronic illness.

I have had Hydrocephalous ever since birth and have had over 20 surgeries to treat it over the course of my life I’m now 25. Even though I had to have surgeries as a kid I was always back to “normal” afterward and would go back to daily life as if nothing happened. But back in 2011 I had a VP shunt revision that changed my daily life forever. For whatever reason this surgery triggered a chronic headache condition that is still challenging to this day. After this surgery I ended up having another one a few weeks later to place a different type of valve in my head in hopes to resolve the headaches unfortunately that wasn’t the case. Even though I had these headaches for a few years I was able to manage them for the most part with daily maintenance medications and abortive meds for break through pain. Bunt in 2013 I had to have another surgery because the tubing that goes from my head had broken off and needed to be replaced things have never been the same since.

After this surgery my chronic headaches became almost completely unmanageable I was in such extreme pain on a daily basis I had to move back home because where I was living I couldn’t get the right specialists. When I first moved back home in April of 2914 I thought I would be back to baseline in a few months unfortunately that wasn’t the case. Over the course of a few months I went through countless medication changes and tests before they discovered I had an infection in my shunt. At first I was relieved that there was finally an answer to the cause of the extreme pain. I figured that once I completed the IV antibiotics and had a new shunt that things would be normal gain. But for whatever reason my body had other plans and I had a traumatic toxicity to a headache control medication that forced me to spend a few days in the hospital and having to start over finding a good maintenance headache medication.

After a few months it seemed like I had found one and I would be able to go back to normal life. Unfortunately the headaches became extreme again in fall of 2915. My neurosurgeon decided the best course of treatment was to place an ICP monitor for 48 hours to see what my brain pressures were in different positions. This required surgery to place the monitor than two days in ICU to monitor the pressure. After the test it was determined my shunt was way over draining causing the increase in headaches. They did another surgery to correct the issue. For 36 hours I felt better than I had in years and really started to feel like I might get my life back but unfortunately that wasn’t the case. I had been sent home the day after surgery because I was doing so well only to end up back there less than 24 hours later. I ended up back at the hospital and they found that my shunt wasn’t draining enough. Instead of doing surgery right away they gave me IV steroids for 24 hours and sent me home only to end up back there and needing additional surgery.

After the series of surgeries I had in 2015 things were somewhat okay but my headaches were still way to frequent and no medication was helping it started to get to a point where the slightest changes in weather could amplify the pain I can’t even fly on airplanes or go anywhere with a change in altitude without debilitating pains. I had another three surgeries back at the beginning of the year because I was once again over draining and had another ICP monitoring and 2 more revisions. Since then any kind of pressure change even going up and down a hill will cause debilitating pain and so does wind. Because of this all the things I use to do just aren’t possible because the intense pain just isn’t worth it. It makes me very sad because it means all the active things I used to do just aren’t an option anymore. I used to do tones of sea kayaking, downhill skiing, hiking, traveling and other things but at this point these things just aren’t possible any more.

Generally this doesn’t bother me anymore because I’ve realized I need to accept things as they are and find a way around it. But then there are days I seriously mourn the active outgoing person I used to be. There are days I get stuck on loops of all the happy memories I have of all the things I used to do and knowing that I’m most likely never going to do those things again. In so many ways I have accepted things but I still really wish I could do these things. I have a lot of shame because of it. In some ways I’m embarrassed to meet new people because I don’t have anything to talk about anymore. As many of you know with chronic illness it’s hard to find people who really “get it”.  hope that one day I can do these things but as of now I’ve been told these are issues I will have the rest of my life which is why I’m in acceptance mode because It feels like there really is no other option.

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