This isn’t a sequel to 28 days later, although at times it feels I am in a zombie movie!! We have hit the 196th day since I was wheeled down to theatre for my cranio-cervical fusion. As my Dad says to me each year on my birthday “Where has the time gone”?
In the weeks and months following surgery I have had an overwhelming need to be quiet, be by myself and alone with my thoughts. Initially I had no idea why, it was just an overwhelming feeling that I had no choice but to run with. During this time I was in quite a negative mindset but struggled to articulate to those closest to me how I was feeling. I could divulge my symptom list no problem but I just could not share what was in my heart and head at the time.
I have mentioned previously that when I was diagnosed with EDS, aged 31 after a lifetime of symptoms I was actually initially elated. I felt validated. All those years of suffering and not knowing why, I finally had an answer. Of course at this stage I did not truly know the extent EDS had ravished my body. Not long after the diagnosis I was diagnosed with POTS , a condition within itself but often seen along side EDS. Another debilitating and invisible condition. Then followed the diagnosis of cranio-cervical instability. You simply do not expect to face your own mortality aged 32. We all have ideations of being old and grey, tucked up in our warm beds, myself included. I was petrified, I was scared my life would be cut short and there was still so much I wanted to do. I was declining so rapidly it was alarming. I could no longer hold my head up, walking became difficult as I lost my balance and once severe unremitting vertigo set in I felt like I was on the Sea Cat crossing the Irish Sea, only minus the Guinness and giggles!! I was struggling with my bladder, nausea, tremors, breathing and heart rate. All these bodily functions we take for granted were fading, malfunctioning….I was in bad shape. We had to fundraise for the surgery and my campaign and health issues could not have been greeted with anymore kindness, warmth and love from those closest to me to absolute strangers reaching out. This was a driving force for me to keep going however I also struggled being thrust onto social media, newspapers and television. I felt vulnerable, exposed and more than anything embarrassed. I am such a proud person and was so scared people now looked at me differently, pitied me and did not see me for me anymore. I felt lost in it all and at the same time full of gratitude. I was a basket of emotions but I was too unwell to work through those emotions, too unwell to think about them. My main aim was to make it to surgery and get on that flight to Washington. I had no expendable energy to concentrate on the impact being diagnosed with three major life altering conditions had on me within less than a year….
The impact…I remember walking into my physios room, I was having a bad day to begin with and she asked me how I was getting on. Before I knew it tears were rolling down my face, it felt like I was letting go of months upon months of emotions. A box of tissues later, I composed myself enough to talk and I was surprised at what was leaving my mouth. I never would have envisaged my physio being the person I shared all my thoughts with but it just felt right, it was time. I told her how lost I felt, that I didn’t feel like me anymore, I had no confidence, I didn’t fit in anywhere, I didn’t like myself, I had nothing to give, I couldn’t do anything, I wasn’t better, I felt under pressure, I felt a failure, Id let people down, I couldn’t look at myself in the mirror as I didn’t look like me, I felt a burden, I couldn’t get used to my new neck movement and that I couldn’t accept this is to be my life. I told her how hard I was trying but not seeing the results I expected, that the recovery was tougher and slower than I imagined, I told her I’m pushing myself daily to the point of huge amounts of pain out of frustration with myself. She gave me the time I needed to get this heavy weight off my chest. She then told me I am grieving, grieving for the life I had and for the life I had envisaged. She told me its a process, a process I didn’t start as I had received multiple diagnosis which hit me like a bowling ball one after another yet I didn’t have time to think about what any of it meant. We talked about how negative I was feeling about myself and how I was presuming others felt the same about me. I was in a negative thinking pattern. She informed me this is one of the toughest surgeries to recover from in relation to both time frame, pain and adapting to your new neck movement or lack of. She thought I was doing extremely well and pushing myself too hard, too fast and to be more gentle and kind to myself. We discussed how anyone before a surgery no matter mild or major has a two pronged thought process, the first being realistic expectations and the second being the little voice of ‘hope’ in the back of your head that this will cure everything, I will go back to ‘normal’. I most definitely had this, the sensible side of me knew the surgery was to ultimately save my life however the little hope thoughts were there and I had inadvertently set myself up to fail with unrealistic expectations. She told me I could not fully move onto acceptance until I had allowed myself to grieve, to sit back and allow myself the time to actually really think about the magnitude of the last year especially. I was given a little homework sheet to challenge the perception of myself and thoughts. Needless to say no physio took place this day but in so many ways it was so much more productive. It was a turning point for me….
From this point I have allowed myself to cry and not drown in my thoughts. I am learning to open up about my ‘real’ thoughts. I am working through them day by day. In society we can be so hard on ourselves, I need to put extra hours in, Im not doing what I should be doing, Im no good, I could have done better and miss our achievements no matter how small they maybe. I am definitely making myself take note of my achievements, reflecting on how far I have come. Six months ago I was losing the ability to walk and living my life from my bedroom and today on certain days I can manage short walks, my headphones go in and I lose myself. I have been to two family events and managed a few hours of utter enjoyment and normality. I am starting to find myself again, bit by bit the pieces are coming together. Some days are easier than others but I am moving forward. Am I still grieving? Very much so however I am a million miles away from what I was six months ago and for that I am eternally grateful.
This past year has taught me that I am stronger than I ever thought I could be, I didn’t give up no matter how much I wanted too. I have no idea from day to day what I will wake up too but the one certainty is that I face whatever it is head on, with my head screwed on, literally!! Having multiple chronic illnesses is like trying to extinguish a major fire, you may extinguish one flame and another rises and another. You just cant get on top of it and at times it burns you out, drains you and can suck the life out of you. My life will always have challenges, there is no getting away from that but I will always try my best to face them.
I am healing well from the surgery, my wound is remarkable. The mans a genius, he should really take up embroidery as his needle work is phenominal !! My undercut is growing back nicely. I had my 3 mont follow up scan and the hardware was still in place. I will be having a CT scan in around 3 months to check that my bone is actually fusing which is vital for a successful fusion. It feels strange living without a rib and a fused neck as its changed my whole posture and body, there is a definite trade off when you lose the ability to move your head/neck however I take the trade off happily to be sat here able to write this. I have been having many other investigations over the last few months which haven’t been easy and I will post about themsoon.
I truly cherish the good days/moments, Suck it in like its my last breath making the most of them and manage the bad ones as best I can. When faced with so much uncertainty time becomes a precious commodity, its important to make the most of what you have when you have it. I cherish those around me even more than I did before, I take note of my surroundings more, I embrace the capabilities I have that day. I look at the world through different eyes now. For the first timein two years I am starting to feel alive again.