Luke Ostler

The Benefits Boys return for Long Covid Support

Fundraising for Long Covid Support
raised of £1,500 target
by 68 supporters
Event: Williams BMW Rochdale​​​ Run, on 8 October 2023
Long Covid Support

Verified by JustGiving

RCN 1198938
We support, advocate and engage in research to improve lives of people with Long Covid


Update: the big day came along with some beautiful weather and the Benefits Boys set about their task with gusto. Nerves were high, and after a strong start I had a hairy moment with a sharp bit of glute cramp at the lake, but it soon settled down and we all turned on the afterburners for a determined last third.

It was an emotional moment for me as I crossed the line, thinking about how your amazing donations will help people going through the same things as I did I over these last two rollercoaster years.

David scored a magnificent 2:19 time, while me and Karl soldiered to the end with 2:23 and 2:28 respectively. Thank you so much to my two teammates for helping me through it and to conjure up a spectacular fundraising effort, and most importantly thank you to all of you ❤️.

The Benefits Boys are back and ready to run the Rochdale half marathon again on 8 October, and for one member of the gang it’ll be a very emotional occasion indeed. The very short version is we’re raising money for a charity that means a lot to me, Long Covid Support. If you fancy donating please go ahead and don’t feel you have to read my (very lengthy) story… but if you’ve got a few minutes to spare and/or need some more persuading, read on.

It feels a little strange writing about myself when fundraising, and doing so is bringing back some painful memories, but I owe it to all long covid sufferers, and to myself, to tell my story.

When we three last ran the Rochdale half in 2021, that time for Parkinson’s UK, I expected it to be hard, but not to feel like the whole lower half of my body was on fire, nor to feel no sense of elation afterwards but instead a strange grey depression. We’d just raised a huge amount of money and seen just how generous and amazing our family and friends were, but I just couldn’t feel it. When I developed a strange crushing headache that night I realised I’d better take a test, and yes – I’d caught covid for the first time and had run the race fully viral loaded up. Exactly the opposite of what any doctor would advise you to do.

Naturally I was worried and over the next few days I suffered with depression, brain fog and some very strange alternative despair and euphoria-like feelings. Bodily I felt fine apart from some predictable aches, and I didn’t take any time off from work. So far, so fairly standard covid. A few weeks later everything had gone except the headaches, but when they were still hanging around after a couple of months I started to get really worried and spoke to a doctor, who said to wait until 12 weeks – and at that point they might do something.

Being a keen exerciser, I wanted to get back into my sports, and knew I should ease myself back in gently, but after doing even what had previously been light activity for me I’d feel a little light headed or would develop a headache. I could cope with this and continued to build things up, but one night when lifting some light weights I felt a strange pain in my head. The next day was when my nightmare truly began.

When out walking I suddenly felt as if I was on a boat – a feeling I’d never experienced before (on dry land) and which filled me with terror. This was around 12 weeks after I had covid – a common point for long covid sufferers to develop new and often far more severe symptoms. When I asked the GP to be referred to the long covid clinics he’d mentioned to me in an earlier call, he said they didn’t deal with neurological symptoms, and there was nothing further he could do. This was all it took to tip me into a pit of spiralling anxiety, and I began to shut down mentally and physically.

One morning following several days of dizzy spells and a thumping heart I parked up for work, got out of my car and felt a sharp pain in my head that seemed to increase the further I walked down the road. Panicking, I inched back to my car, feeling the eyes of confused motorists on me. Conceding defeat, I called my friend Phil and asked if I could stay with him for a while.

I owe a debt of gratitude that can never be paid to my friends for what happened next. Baz drove from Liverpool to Rochdale to collect me and take me to Phil’s house, where he and Hannah looked after me for weeks on end. Feeling that to carry out any amount of physical activity was horrifically risky, I stayed glued to Phil’s sofa. In those weeks I felt utterly trapped and that my life as I knew it had ended. I couldn’t think straight and thought I’d lost the ability to carry out any activity I’d ever found enjoyable, while the dizziness and headaches ran riot. After a few weeks I very gradually returned to work, an hour at a time, and started to walk outside, increasing my range a few yards at a time. Therapists said I had severe depression, anxiety and PTSD, while doctors convinced me I was suffering from vestibular migraines and put me on a plethora of medications and supplements.

After a few months I was back working and gained the confidence to return to live at home, but my trials were far from over. My symptoms plumbed new depths of horror; there were spells where I experienced the entire world as a wobbling, unnatural and unholy mess, and even in my better moments I felt that I was floating through space rather than walking. Worse still was derealisation, an excruciating feeling of not being connected to the world, and of moving through it like a knife cutting through butter. Friends and family became 2D shapes on a television screen as I looked at them from the other side of the glass. Although the sharp head pain when doing anything physical had subsided, at this point I was confident enough only to take 15-minute walks; I was lucky enough not to experience the unending exhaustion that a huge percentage of long covid sufferers do, but I’d get sudden energy drains and would have to lie down for half an hour. Screens would make my head whirl, so TV was out of the question, and even a swaying wire was painful for me to look at. I hadn’t previously imagined even close to the levels of discomfort the human body can conjure up.

Although I was functioning at a basic level, I felt as if the happy, laid back person I used to be was gone, and life had become a gruelling task rather than something to be enjoyed. Many times over those months I told myself that I’d just get to the next important date in the calendar, and if things hadn’t improved by then I’d end it all. Making those deals with myself was the only way I summoned the strength to keep living.

Then came a decision that changed the course of my life and was the best I ever made; I took a course called the Lightning Process, that taught me to convert my crippling anxiety to hopeful predictions. I instantly felt able to attempt so much more, and take tentative steps back into the things I enjoyed and desperately wanted back in my life, which managed to distract from my still dreadful symptoms just enough to give me fresh impetus.

The road since that point a year ago has been bumpy to say the least. I’ve tried every treatment I could find in the corners of the internet and spent most of my savings on doing so; oxygen therapy, injections to reboot my nervous system, hormone replacements. It’s hard to know if anything physical has helped, and the only certainty I can give is that working hard on my mind has borne fruit. Mindfulness and accepting my new reality, with all its rough edges and trials, have done more for me than anything else and have very slowly, but surely, brought about substantial improvements. A fast-scrolling phone screen or a hectic game of football can still spike up the dizziness a little, and with it the accompanying activity, but now I take some deep breaths and let it just wash on by. Today I’m back enjoying my life, and I know that if I handled this (eventually!), I can handle anything life throws at me.

The last diagnosis I had, and I think the most likely at this point (although that darned virus certainly kicked it off) is Persistent Postural Perceptual l Dizziness (PPPD) – a condition for which there are no medications. One inspiration for me has been my fellow Benefit Boy David, who himself has had feelings of dizziness for several years now, and progressed through an anguished start to come fully to terms with it. You’d never know David had any dizziness unless he told you, and that’s what I’m aiming for.

As long covid sufferers go, I’m one of the lucky ones. During my journey I met and spoke to so many others with unimaginable combinations of completely debilitating symptoms, including most of mine, and some of whom had been stuck that way for years on end. People who were ultra marathon runners and now couldn’t wash the dishes without being consigned to their bed for days as a result. It’s those people that I want to help, using the gift I’ve been given of a return to the life I love, helped and facilitated by all the amazing people who've supported and put up with me along the way. For a long time I cursed that race in 2021, believing that it had been the trigger for the hell that followed. So to complete it now, something I thought I’d never be able to do again, would mean an incredible amount to me. Turning my experience into something positive for the long covid community would mean even more.

About the charity

Long Covid Support

Verified by JustGiving

RCN 1198938
Our mission is to improve the futures of people with Long Covid by ensuring equitable access to high quality healthcare, employment rights and welfare services through peer support, health and work advocacy and research engagement.

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