Today was one of the hardest days of my life so far – and I was delivered good news. Not only was it good news, it was the best possible news.
I sat in that waiting room, my stomach made itself comfortable sitting in my throat. My anxiety was through the roof, I could hardly breathe. I had been preparing myself for this moment for months now. I knew it would be okay, I’d made peace with it. I was just desperate for some sort of answer. Just breathe. It’s okay.
We walked in and sat down opposite the doctor. I was so sure I knew what she was going to say that I almost didn’t hear her tell me exactly the opposite to what I expected. “Your results are perfect; you don’t have Multiple Sclerosis.” My brain and spinal tests all came back perfect. I should have burst out of my seat with joy. I should have cried the happiest tears and danced the happiest dance. I didn’t. I sat there and stared blankly at the doctor. What. “You’re fine.” I’m not fine actually, I can hardly walk, I can’t lift anything heavier than a glass of water, I can’t spend more than half an hour out of bed, I can’t remember what I spoke about earlier that day. I’m not fine. The tears welled up. I had prepared myself for the opposite for so long that I had no idea how to take this news. WHATS WRONG WITH ME. I wanted to scream this at her, but I was still frozen. She was baffled by my response, “this is great news! You should be so happy!” But I wasn’t. My mum and my partner were just as shocked as the doctor by my lack of joy. They were so thrilled. BUT WHAT THE FUCK IS WRONG WITH ME! She began to wrap up the discussion – because I was fine and there was nothing more they could do. I finally began to speak – or splutter. “But what am I going to do? I can’t keep going on like this. I can’t do anything. I’ve stopped my whole life because of this shit. It’s getting worse every fucking day! What the hell do I do? What is wrong with me!” The doctor didn’t know what to say. She had no answers for me – I realise that now. At the time I honestly expected her to figure it out there and then. Ok so it’s not MS then what the fuck is it! Overwhelmed with my emotional outbreak she fumbled back through my notes – confirming what she said before – “your results are text book perfect.” I DON’T CARE THAT MY RESULTS ARE PERFECT – MY WHOLE BODY IS CURRENTLY FUCKED UP. I was beyond frustrated. No suspicions of what else it could be, no other avenues to try, nothing. Not knowing how to deal with me she left the room to get her senior – the head neurologist. When she left my partner and mum bombarded me with “you should be happy!”s and “stop being so negative”s. Shut up. Both of you. Just SHUT UP. I needed an answer. I needed closure. That’s what today was meant to be. Cue the full on snot sobbing ugly cries.
The head neurologist walked in a few minutes later – with nothing new to say of course. “your central nervous system is fine.” Blah blah blah. Ok great. But what the fuck do I do about not being about to walk or lift or remember or not be in pain all the fucking time. Nothing.
I walked into that room clinging onto the hope of finding an answer, desperate and anxious to know what was wrong with me – but I didn’t get this. I had spent the past months clinging to this date – this is the day, just suck it up until then and after that you can get it sorted. But of course, there’s no answer. There’s no explanation. There’s no magic pill to make it go away. There’s no next step to get things sorted. There’s nothing. I felt sick to the stomach as I dragged my numb and frail legs out of the hospital. Nothing.
I spent the 90 minute car ride home in total silence. I jumped on my phone and began to google every possible combination of my symptoms; as I had a thousand times before. I googled things with similar symptoms to MS and went through copious illnesses I’d never be able to pronounce and eliminated them all one by one. Nothing. No answers. No solutions. I then googled if other people were eventually diagnosed with MS despite the negative MRI and Spinal Tap results. Yes. Pages and pages of forums where people discussed many years of symptoms and no diagnosis. So many horror stories of people going through what I am now for years – decades even. I don’t think I have the strength to wait another day let alone another fucking decade!
Up until now I’ve been so positive, so strong. After today I feel so weak – I want to give up. I want to curl up in my bed and cry for the rest of forever. There’s no light at the end of my tunnel; all I see is darkness. This is not me. I can do this, but I’m so exhausted that I don’t want to. I know I can get through whatever this is, but in all honesty, I can’t be fucked. I’m physically, emotionally and spiritually drained. I’ve got nothing left to give, even if it is to myself. Nothing.
So yeah, maybe I did get good news today. But I didn’t believe it. I had so many unanswered questions. I have no idea where to go from here.