‘The future is looking bright’. That’s how I ended things in my last post. Talk about tempting fate. 6 days later, I recognised some early warning signs of feeling a bit sick, so I immediately stopped all exercise and other commitments, in a hope that this would fend off any relapse back into hell. Wrong.
It gradually got worse, day after day. I tried to fight it by not leaving the house, sleeping 12 hours a day, eating the best foods I possibly could. I was so desperate not to be sick again, especially with the wedding just 8 weeks away. But this thing, whatever it is, is pure evil.
My constant headaches were back, along with the fever-like temperature and absolutely crippling exhaustion. I think the tiredness is quite hard to imagine for those that haven’t experienced it. This isn’t ‘I really need a cup of coffee I’m struggling to stay awake’ tired. It’s more like, every muscle in your body isn’t working, and any movement feels like you’re moving through treacle, and your brain is in the same situation. Processing things seems so much harder than normal.
At first, I tried to stay strong. I really did. I knew I had to, for my family and friends, especially with the wedding on the horizon. We were in once in a lifetime territory, and I couldn’t afford to squander this time – I’d never get it back. Katie deserved to have the most exciting, fun, lead-in to the big day and beyond, and I wanted nothing more than to give her that.
But I failed. As the weeks passed, my health continued to get worse, not better, despite my new strategy of 100% rest and nothing else. I was off work again (my symptoms were so bad there was no way I could work anyway) and I just stayed indoors as much as was possible without going insane. I didn’t really have a choice to be honest. Taking the dog for a walk took too much of a physical and mental toll – that felt as hard as any marathon I’d ever done.
I desperately sought help wherever I could, visiting countless professionals from different areas of medicine and beyond, in the hope that a magic answer might be lying around somewhere, yet to be unearthed. I spent 90 minutes every single day (paying a small fortune at the same time) in an oxygen chamber. But nothing I tried or did seemed to make a difference. It was cripplingly sad and frustrating.
The scary thing was that the exhaustion and fatigue were actually worse than my previous months of sickness, which to me showed a worrying trend in the wrong direction in terms of my future life. I could see everything unraveling in front of my eyes.
My stag weekend rolled around, and my best man Dave (massive fan of the blog) and I had already extensively talked strategy re; the trip, knowing that with just 2 weeks before the wedding, I was going to have to be really careful with my energy levels. I was sick with worry and regret around what could have been, and cried for hours in the morning before heading off, cursing the fact that my life has crumbled into a million pieces.
I know it sounds pathetic, but having a stag, being surrounded by the guys you love, and being able to laugh and create memories, is always something I’ve looked forward to ever since I was little. It felt like not only was I not going to get this, but I wasn’t ever going to be able to create any meaningful memories in the future.
In reality, I shouldn’t have been worried. The lads were class, and just being around everyone gave me a huge shot of adrenaline and happiness. I was able to get stuck into most of the stuff that they had planned, although I wasn’t able to drink anything which was rubbish. It was slightly heartbreaking to have to cut things short on the Saturday night in Bristol city center, and I dragged my heels home as everyone else carried on into the early hours of the morning.
The weekend did take an awful lot out of me, and I was absolutely knackered for a few days afterwards. But we were in full wedding prep mode now, and there was loads of things to take care of. To be clear – Katie said on numerous occasions that I didn’t have to do anything and she’d take care of it, but those who know me know that’s not my style at all.
I knew in the week of the wedding, I had to try and be super strong, and push the fact that my physical symptoms felt as bad as ever to the back of my mind, because Katie deserved to be super excited in the build up to her wedding, like any bride should, but especially her after the hell we’d been through in the last 6 months.
But I failed again. I was just breaking down with the weight of the illness. I wasn’t worried about the wedding day itself, I knew it would be incredible. I was just terrified about what my life was going to look like long term, convinced things are never going to be the same again. I tried to hide this from Katie, but it was just impossible. I was absolutely broken.
Thankfully, the day was absolutely AMAZING. Better than we could have ever expected or hoped. I didn’t need to ‘pretend’ I was OK or that I was having a good time. Adrenaline coursed through my body, and for one day only, I was normal Joe again, absolutely loving life, feeling so blessed to be around everyone that I love and care about.
Katie looked beautiful, and seeing her having so much fun made my heart melt. We could both briefly forget about the current situation and I even allowed myself to have a few beers for the first time in months – absolute bliss.
People love a happy ending, and I wish I could give you that. But the reality is still pretty bleak. I’ve actually developed new symptoms, including one where every time I stand up, I go really light-headed and dizzy, losing my vision momentarily and on occasions nearly passing out.
I can’t begin to describe how demoralising it is, waking up every single day for months on end, and within seconds coming to the realisation that you’re still not any better – you’ve got a really sore head and getting out of bed feels like scaling Everest. It strips down your morale, just a little bit more every single day. You feel more and more helpless, and worthless.
As the weeks go on, individual days become harder to navigate. Getting through the next hour becomes a struggle, let alone getting to the end of the day. Whatever this is, it has taken away every single bit of joy and hope I used to have in life, and left me with nothing but misery and bitterness. I hope people don’t see me as a miserable person, but know that this illness is bringing out the negativity in me.
I struggle with the loneliness and isolation, but I refuse to subject my friends and family to any more misery. It seems like as time passes, I have less and less to offer socially, and I know people aren’t going to put up with this rubbish forever. People are going to just (quite rightly) crack on with their lives, and I feel like I’m just going to be permanently left behind.
I know it’s really tough for others, because it’s so hard to know what to say and how to act around me. It’s becoming increasingly harder to feel part of ‘real life’, and when I see ‘normal’ people out and about I really struggle to process and understand why that can’t be me, just wandering to the shops or going out for a nice lunch with my family.
It doesn’t feel like I’m living anymore, just existing. This illness has stripped away everything that used to be fun and good, and left me a shell of my former self. I’ve never been so scared in my life – worried that this is going to be the way it is now, for good.
I tell myself I’ll keep fighting, and there are days when I look for new solutions, try a new approach or make the most of the moment I’m in. But there are also days when I completely give up and lose the plot, and don’t see the point in anything anymore.
I’m not asking to run marathons again, or do another Ironman or crazy long-distance event (although I’ll never lose hope of doing so). I just want to be able to open the front door in the morning, with my dog, and my beautiful wife, and look around and take in the world, without feeling like I could collapse at any moment. We’ll keep trying.