I’m still hanging in there. I’m finding posting these updates helps me keep attached in some way to my old life, so I’m going to crack on with them. So many people have said to me it’s refreshing and reassuring to see and hear the truth – that not everyone is ‘living their best life’ and climbing a mountain in the Pyrenees or trekking through the Amazon. If you don’t want misery and suffering, please stop reading. If you’re a friend that wants to further understand what I’m going through, then please carry on.
I worry greatly that some people think that I’m just ‘tired’. Have a bit more sleep mate. Get your feet up and watch a bit of Netflix. Oh how I so desperately wish that was the case. I thought I’d take you through a ‘standard’ weekend in my life, which isn’t really a weekend, because every day is pretty much the same to me now.
Saturday morning. I’ve been up since 3:30AM, because I’ve gone to the loo in the night, and after this point I’m usually too terrified to go back to sleep. What the hell is happening to my body? Why is it seemingly poisoned, unable to function with any kind of normality anymore. My heads pounding and I’m hot like I have a fever. This has been my status quo for the last 3 months now.
A relatively new, horrible symptom I now have, is severe dizziness whenever I stand up – so bad that at times I nearly faint. This happens 20 times a day, at least. It’s deeply disturbing, as waves of fear come with it, as I fail to understand why my body is so broken.
I lie there for a couple of hours, so unbelievably exhausted, I just can’t comprehend getting out of bed. It feels like 100kg weights have been attached to my arms, legs and head, and moving requires me to drag them with me. There’s the added downside that I see absolutely no point of getting out of bed and living through this horror show for another day.
Eventually I convince myself that I have to get up, and keep trying. I can’t give up. Mornings used to be my jam – I’d spring out of bed before 6AM without the need for the alarm, so excited to start the day. Now my head is fuzzy, I’m slightly confused as to where I am and what day it is. I stagger down the stairs and collapse myself onto the sofa, the effort enough to require me to sit there for some time.
I have the additional problem that it’s a Saturday. Parkrun. Some people will think I’m foolish to keep attending, but I have my reasons. Primarily – it’s the one thing I have left that still attaches me to my old life. This ‘thing’ has pretty much taken everything else from me. I’m lucky to still have Katie and Stan here at home with me, but I have nothing to offer them in the way of fun or happiness, so it can be pretty bleak at times.
This is my one outing away from the house during the week. Katie has been continuing to train hard (reluctantly – she worries that it’s making things harder for me, but I strongly disagree. Watching her pursue her goals is one of the only things that gives me snippets of happiness and pride) and is scheduled to go to Dulwich, a fast course, in search of a fast time.
I want to go with her, to offer some support, so we head across to South London together. I’m driving, but I feel fairly nauseous, which is an extremely common symptom for me every morning. I’m also mentally and physically exhausted, which is par for the course pretty much all the time, despite having done absolutely nothing for the last 7 days.
We arrive and I try to stay positive until she’s left my company, as I don’t want her to be worrying, and concentrate on herself for a change, so she can try and have a good run. As soon as she’s gone I’m an absolute mess. That hour sitting in the car has made my legs feel so weak that it’s a real struggle to stand when I get out.
As I wander towards the start line, I see so many people jogging around the park, warming up or doing fitness classes, riding their bikes. Just observing them makes me feel knackered, and it seems impossible that I’d ever be able to do that myself without quickly passing out from the exhaustion of it.
The minutes before the start are bordering on a traumatic experience. It makes me realise how much this illness is changing me as a person. The loud, self-assured, grinning like a manic Joe has gone, replaced by someone who can’t make eye contact with anyone, and chooses to stand 10 meters away, staring into the distance until the last possible moment.
I felt like a 5 year old child, lost and scared. This isn’t my place anymore, and I can’t relate to who any of these people are. I hear snippets of conversation about people’s weekend plans – going for brunch or heading to the pub with friends. Tears are forming in my eyes, as I contemplate the rest of my weekend, crashed out on the sofa, trying to forget the amount of discomfort I’m constantly in.
I gather right at the back, and set off at a brisk walk, watching everyone charge away off the line. I know people will be saying I shouldn’t even be there, it’s going to make things worse. We’re at the stage now, where no one has a bloody clue what’s best for me, and I’m of the opinion of nothing can be any worse than what I’m going through right now, so I may as well just get on with it.
I try and ‘run’ for a few minutes at a time. When I say run – everyone has their own ideas on what that constitutes, and works at their own individual levels. I’m travelling here at half the speed I normally would, not much faster than most could walk briskly. But my body can’t do it. My heart rate elevates to quite scary levels – the numbers I’d usually see if I was doing a hard session or racing.
I panic and stop. At this moment in time, it feels like I’m dying. My body doesn’t know how to work like a normal persons does, and I worry I might collapse from the strain of it all. There is no way my mind can cope trying to process how ill I seemingly am, and I’m paralysed with fear regarding the future.
I carry on walking, tears now freely flowing down my face. It’s impossible not to think back to the life I used to have, and all the wonderful experiences I’ve been lucky enough to share with my friends and family. My heart breaks into a thousand pieces when I consider the concept of me never being the same person again, living this quarter-life, on my own. It’s shattering.
The Dulwich course is 3 laps, and I know Katie will be coming past me after I’ve barely completed one, as she races towards the finish. I compose myself because I want to be there for her, and I’m still fiercely proud of everything she does. I spot her coming and run alongside her momentarily, offering some support and words of encouragement – she’s absolutely flying. My heart swells with pride, and for a fleeting moment, I’m able to suppress the deep sadness that I feel on a constant basis.
I then need to contemplate getting myself around the next two laps to the finish line. 5 kilometers feels like an ironman, as I run-walk my way to the end. 32 minutes, and it’s absolutely ruined me. My body feels like it’s decaying, and I’m really light-headed.
I watch some faces that I recognise from the running scene wandering off away from me. The old Joe would’ve gone and had a chat, regardless of my own circumstances, but I can’t, and instead hide away, trying to hold myself together. I can’t be part of their world anymore. My body has given up on me.
Katie’s off doing a bit more running, and I wait in the car, determined to be positive in her presence and hear about how well she’s done. She’s absolutely smashed it, running 18:03 for 5 kilometers – a huge personal best. Obviously I’m delighted for her and ask to hear more about it and get the full download.
The conversation naturally fades out, but I’m determined to stay positive in front of her, just to at least give her an hour or two of happiness. I fail. I can’t do it. I break down into a million pieces, taking her through the above experience. I’m so utterly terrified about what is happening to my body, and how after nearly 9 months of symptoms, it’s probably the worst state it’s ever been in physically. I’ve genuinely convinced myself that I’m slowly dying.
I gather myself on the journey home, and spend the rest of the day anchored to the sofa, trying to get through individual hours until I make it through to the end of another day. I just drift with no real purpose, too mentally tired to follow up on some emails or concentrate on a good book. The thought of going to bed is terrifying, as I know I’ll have to repeat the whole process again tomorrow, but having Katie there to comfort me and just keep me company is a huge, huge help.
The next day, I’ve signed up to volunteer at junior parkrun, a 2km event for under 14’s. It something to get me out of the house and give a little back where I can. Another thing that makes me desperately sad is my complete inability to do more things like this. I want to come out and support all my friends doing races, and volunteer at numerous running and triathlon events, but my health doesn’t let me, and it frustrates me so, so much. Even if I could be involved in just a little part, and know I was helping, it would perk me up no end.
I think the most horrible thing happening right now is the death of the old me. It’s like I’m staring through a window, outside looking in. I used to be so social, happy and loud and annoying. As I further recede into my shell, I’m finding social situations more and more difficult. I see it as a life that I’m not allowed to be a part of. Why would anyone want to see me. I’m not fit for purpose anymore.
I really don’t want to come across bitter, or like I don’t care. I care so much about my friends and family, and so want them to live, happy, fulfilling lives. But that whole concept seems so alien to me – I can’t imagine having my body and life back to take part in it all. It all seems so far away.
One of Katie and my main frustrations, is people mistaking this as a mental illness. There are undoubtedly huge mental implications of whats happening to me. It’s fundamentally changing who I am right now. But this is brought on by the severeness of the physical symptoms, and the way they completely incapacitate me on a daily basis.
I still have the motivation and drive to live my old life – it’s not a case of me being able to ‘will myself’ better. I’ve tried that, and I still nearly collapse when I stand up. I can be as happy as Larry for 48 hours and I’ll still have a pounding headache. Whatever this is, it has it’s claws in deep, and it’s stealing my entire life.
The support and advice I’ve received from all corners of life has been both amazing and overwhelming. When I hear that someone has taken something positive away from something I’ve shared or said, or even if someone simply tells me they’re thinking of me, and to keep my chin up – this keeps me going for another few minutes.
If I’m being completely honest, it’s becoming harder and harder to keep going. There’s not a day that doesn’t pass now, where I’m not a blubbering mess. I try and distract myself in any way that I can, but having nothing to fill my time with, I have hours to let my mind wonder to all the horrible possible future scenarios. I’m forgetting who I used to be, and how to act in day-to-day situations.
I know people have got it worse than me. I’m probably being incredibly selfish by thinking this is literally the end of the world. To me, it feels like it is right now. I just want a scrap of normality back. I couldn’t give a toss if I never ran a marathon again. I just want to be able to take my wife on honeymoon for a few days. Or just out to dinner for that matter. I want to tell her that I’m not suffering anymore, and she can look at me and know I’m telling the truth.
We’ll continue getting every test under the sun. We’ll continue seeking help. I’m not ready to quit yet.