I’ve included a detailed list of all the tests I’ve had, symptoms I’ve got, and potential causes for what’s going on at the bottom of this post, for those that are interested/have asked
It felt like something really significant changed within me in the last week. Up until this point, I know I’ve been thoroughly miserable to be around, but this was different. I think I’ve finally mentally thrown in the towel and given up – it’s all become too much.
It was Katie’s birthday at the weekend, her 30th, so a bit of a milestone. I spent the entire week trying to psychologically prepare myself to be better, and to be present. The last 9 months have been so horrifically hard for her as well. In what was meant to be one of the happiest years of her life, with a wedding and everything and comes with it, but she’s had to deal with our life being completely overhauled for an unspecified amount of time. The uncertainty and despair would drive anyone crazy.
So I was absolutely determined that she would have a good birthday, whatever happened. However sick I felt, or however miserable I was, I would not let it show and she would have a relatively ‘normal’ weekend. I want it to be clear, that this isn’t the way she would have wanted it. She’s utterly selfless. She’d much rather sit at home doing absolutely nothing, if that was what would make me feel more comfortable. But it can’t always be about me, especially if this just continues on forever.
So we went on ‘holiday’ for a night. Not very far, just 30 minutes up the road to Wimbledon. I couldn’t trust myself to be any further away from home. We had a nice hotel, went out for dinner for the first time in over 3 months, and went to the pub like ‘normal’ people do. The following morning I’d arranged a few friends to ‘surprise’ her at parkrun, and it was amazing to see her smiling.
Parkrun was as traumatic for me as last week. I’ve gone from loving big group situations to feeling out of place, and so unsure of myself, bordering on scared. I found even just fast walking putting pressure on my chest and struggling to breathe. Thankfully, I’ve got some great friends, with Paul and Niall walking around the course with me, listening to me moan on about life.
Afterwards, I’d booked Katie into a spa as a little treat, so I dropped her off and went to sit in the car in Richmond park. This was strategically planned (always the master tactician), as I knew I’d need a release of emotion, so I had my daily cry whilst watching the world go by. I don’t usually hide my feelings like this, but there was no way I was putting a downer on the weekend.
I’d arranged another surprise gathering at a pub in Wandsworth, pretending we were going somewhere else entirely, so she was shocked to see lots of our friends waiting in the garden. Having being worried for weeks that no-one was going to be there when we turned up, I was so grateful for people making the effort to come and put a smile on her face.
I knew this was going to be a tough one for me. It had (by my pathetic standards) already been a long 24 hours, and this is the kind of situation I now struggle the most in. Again – I stuck to the theme of everything is fine as long as Katie is having fun. Deal with real life tomorrow. I also knew that once she’d had a few drinks, she’d be having fun regardless. Christ – did she deserve a drink or two after all we’ve been through.
I don’t want people to think that I’m bitter, or not happy to hear and see all my friends doing well. I love you all so much, and all I want is everyone I love to have amazing, fulfilling lives. It’s just so hard for me to now relate to these lives, and imagine I’ll ever have my own one back again. I’m flooded with complete despair when I think back to all the things I used to do, the adventures I had, the memories I made. All I want is the ability to make more memories – but this seems to have been permanently taken away from me.
I had to go to the pub toilets on three separate occasions, to sob, hysterically. Complete loss of control. I hate to think what the guys having a wee thought if they overheard. Walking through the beer garden was so hard. I couldn’t bare to look at members of the public, being normal, so carefree and having fun. I’m just in so much physical discomfort all of the time, it’s just so hard to grasp that there are lives that exist where you’re able to have fun and be comfortable.
I’m pleased to report that Katie had an excellent day, so that was objective achieved. The following day everything came crashing down, as I failed to keep up the positive attitude any longer.
Something inside me has finally snapped. I think it might be complete loss of any kind of hope. I just feel so, so incredibly sick – my body is completely broken, and it’s impossible to see how it can ever recover. Everything is so un-enjoyable and difficult. I don’t have the energy to do anything more than move from sofa to sofa within my house.
I’m telling myself I’m not going to leave the house anymore, except for emergencies. I seemingly keep randomly uttering the same statements ‘It’s too hard’, or ‘It’s too much’ – like a record on repeat. I just can’t cope. I could never imagine it would be possible to feel so desperately sad, all of the time. Anything seems to set me off – watching a family walk around the shops, or seeing someone cycle commuting to work. Everything reminds me of things I can’t do anymore, and it’s like a stab in the heart, each and every time.
I’m absolutely desperate to be better, and to have some sort of life back. I can’t handle the relentlessness of constantly feeling sick – it’s exhausting being exhausted. I’m struggling to get more than a couple of hours of sleep each night, as I’m either worrying that I’m going to die, or experiencing a raging headache and temperature.
I’m not a reclusive creature, I crave social interaction. I’m in this horrible catch-22 situation where it’s so sad and exhausting trying to engage in real life, but also horrible to have to suffer through this alone, knowing that no one out there can help me. People say all the right things, and I appreciate the support more than anything in the world, but I know they can’t fix me. I’d give everything I’ve ever had to just have my health back.
I wish you were reading a blog about another marathon, triathlon or adventure that we had been on. Tomorrow (2nd September) was meant to be the day we were going on honeymoon, but instead I’m looking forward to yet another hospital visit. The following weekend will be Ironman Wales, something else I’ve given away my entry for. I have lots of friends taking part, and of course whatever happens, I’ll be following their fortunes carefully and thinking about them during the day. I wish so much I could be there to support, but my health just won’t allow it at the moment.
I’ve had lots of people asking what help I’m getting, and also providing suggestions for things I could try/look into, so I thought it would be helpful to quickly detail what I’ve had done so far, and also what the main ‘theories’ are to what is actually going wrong with me.
- > 25 blood tests including checks for Lyme disease, EBV, celiac, thyroid etc.
- Heart echocardiogram and ECG
- Brain MRI
- Chest X-Ray
- MRI on spine and pelvis
- Urine tests
- Sports and exercise medicine consultant
- Head/neck massage
- Hyberbaric oxygen chamber (very expensive)
- Magnesium supplements
- Various vitamin supplements
- Various sleeping tablets
- Resting (all of the time)
- Brain fog
- Severe headaches
- Complete lack of body temperature control – usually feverishly hot
- Crippling exhaustion and fatigue
- Dizziness and loss of sight regularly when standing up
- Aches and pains in my legs, despite having not left the house for days
- Clicking joints
- Shortness of breath – sometimes it feels like I can’t breathe
- Heart palpitations
- Lack of sleep/problems sleeping
- Memory loss/total loss of concentration span
- Serious mental health implications due to all of the above
What is actually wrong with me (theories – ordered most likely to least):
- Chronic fatigue/ME – caused by a reaction to a virus I had at Christmas time. Essentially ‘post-viral fatigue’
- Long COVID – This is a form of post-viral fatigue. I’ve never knowingly had COVID, but in reality, is there anyone in the world that hasn’t actually had it?
- Vaccine injury. This nightmare all started approximately two weeks after my 3rd ‘booster’ jab for COVID. This isn’t as commonly recognised in the UK, but I know for example in countries in Scandinavia, they’re already paying out to individuals they accept have been ‘injured’ by COVID vaccinations.
- Undetected Lyme disease/other viral illness that I’ve already been tested for, but for some reason hasn’t been picked up.
All my blood tests have come back completely normal, suggesting I’m healthy, when quite clearly from the above, I’m not. Activity wise, I’m down to small walks which leave me very, very tired. It goes without saying that I’m not running or cycling at all.
11 thoughts on “My spirit has finally been completely broken”
❤️❤️❤️💚💚💚 I love you and Katie, Joe!!Very very much Phil xxx
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Hello! I messaged on twitter but thought I’d drop a comment here in case you’re not very active on twitter (like me). My friend Celia sent me your blog and I just wanted to let you know that you’re not alone – I’m going through this as well, and it’s really impossible to understand how horrific it is until it happens to you. Also, there are things that can help, and that many people are recovering. Please do get in touch if you’d like to chat – I’m also a member of a few support groups that have been really helpful if you’re interested in getting involved. Sending lots of love, Tessa
Stay strong buddy. Never give up. For whatever it’s worth, sending you a load of love. Dan & Jen
So sorry to hear what you’ve been experiencing Joe, but know we’re always thinking of you and will help however we can. Katie is a superstar. It was a great idea to list your symptoms, tests, etc. Really hope you get to the bottom of it and a doctor reading this is able to help. X
Just read your latest blog. Very hard to read and feel so helpless in what we can do to help except of course pray. We all know you will get better but so frustrating for you not knowing when. You have excluded so many diseases so presume viral or post viral. It seems to now be a waiting game for this virus to go away. We can only imagine what it feels like to be you at the moment.
Love always – Nan
by liking this I am implying to just hug you mate. You arent aline though. You have Katie. And she signed up for this. She is there for you man. You can get through this, you can. This is not your forver. Peace and Love.
Hang in there Joe. You will be back and kicking all our asses again. Take care mate, sending you all the best.
Thinking of you, I’ve followed your blog etc ever since you paced a Surrey half that I ran.
I am so sorry that you are going through this, it must be so hard to have lost (for now) the activities that obviously brought you so much joy.
You are very brave for sharing this and I very much hope to read about your road to recovery.
With my very best wishes,
Hi Joe – I read your blog a few years ago after you posted a race report on the slowtwitch triathlon forum. I haven’t visited it for some time and was shocked and saddened by the recent posts and everything you are going through. I remembered reading a story of another triathlete who was a doctor who went through something similar and thought you might find this helpful: https://gallagher80304.medium.com/
Wishing you all the best for getting some answers and some improvement – it sounds like there is a way back if you can track down the right medical help.
Hi Joe, this sounds unbelievably awful. A friend used to suffer from POTS syndrome, and many of the symptoms seem to be similar to the ones you report here. I imagine the doctors have considered it as a possibility already but wanted to mention just in case it’s an avenue as yet unexplored. Really hope you find answers soon.