long covid treatment in Liverpool [UPDATED] 💀

I thought it would be good to keep track of how I have (and haven’t) received support for Long Covid in Liverpool. By good I mean useful for other people in the same position. By good I also maybe mean an interesting document for people with other post viral illnesses who are looking at the reaction to Long Covid and feeling some type of way. So, this is my shitty timeline. And this is why I have lost faith in health professionals, or rather, the terribly organised structure that these health professionals work inside the NHS.

2021

January: Got sick with COVID. 111 hooked me up with an inhaler. Thanks 111.

Mid February: Fatigue and brain fog were unreal. I called the doctors because I was already worried about my symptoms not letting up, and the man I spoke to was very kind. He wrote me a referral to the Long Covid Clinic there and then, and he ordered an ECG for me.

Late Feb: I had a very bad breathing day and called 111 who sent an ambulance over. The paramedics asked me to go and up and down the stairs and then took my vitals. Spike in heart rate, big drop in blood oxygen, and hyperventilation meant I was taken into hospital in the ambo. I was put in a Covid-positive A&E ward which was pretty stressful given I was staying with my support bubble which included vulnerable people (but all was well). The hospital gave me an ECG which was clear, and took bloods. CRP levels were high which indicated my body was still busy fighting an infection. Doctor told me to high heart rate won’t kill me and everything would just take time. I went to my GP-arranged ECG later that week and everything was clear then too.

March: I was super concerned about how bad my symptoms continued to be so I called the doctors to check in on the referral and they said it had been sent back to the GP because it was too soon for my condition to be considered Long Covid. The GP said there was a three month clause in place but tried another referral just in case they’d get away with it — same thing happened. I was annoyed but fair enough. In the meantime, I was asking for help directly from there. It was around March that my muscle pain kicked into gear and the doctors tried me on different medications but nothing worked.

April: At the end of April, the GP put a third referral in to the Long Covid Clinic for me and I naively thought yes, this will be the one.

Summer: I waited all summer to hear back from the referral. I checked in with the receptionists at the doctors a few time who said they could see the referral was still pending. But in the meantime I sought help from my GP for relief from various symptoms (to no end). Every time I called the doctors, a different GP answered the phone and they each contradicted each other when it came to advice for muscle pain and fatigue. They sent me for multiple blood tests over the summer to investigate different things. When I would call back for results (as they’d never be proactive in getting back to me about them), yet another doctor would be speaking to me on the phone and the contradictions would continue. It was demoralising and exhausting, and it felt like it was a useless little performance between all of us. Waste of time. Nothing came off the blood tests.

August: My fatigue was so bad by August that I was no longer able to go outside easily. Every single thing forced both a crash and crazy muscle pain. So basically, things were no longer bearable. I did some googling and I managed to find the email address for the Long Covid Clinic I had been referred to. I just wanted to know how much longer it would be until I spoke to somebody, just a little ETA as a treat. They emailed me back right a way requesting to call so we spoke on the phone. Fuck me. The lady that answered, who was lovely, told me that after my GP had referred me in April, the Long Covid Clinic had gotten back in touch with them first week of May to request more information about my case. And like… my GP had just never replied. I had been sat there all summer, body in agony, politely waiting because I thought things were in motion. And I would still be sat here politely waiting if I hadn’t sent that email. Now, the extra rough thing about hearing this is that the person on the phone to me also said that my referral now was pretty out of date - meaning, the blood tests and ECGs I had had were all too long ago now and I’d need to have more.

As someone who was struggling to walk around the block, this was hard to hear. I then went and told my GP about all of this who denied the LC Clinic had ever been in touch. At this point, with nowhere to put my anger except for blog posts like this, I knew there was no point finding out exactly which party had fucked up. I just wanted my ticket. I wanted to be seen. So, I went to the hospital for an ECG. I got more bloods done. I called the clinic regularly to make sure they had received my new test results - they hadn’t. I called the GP regularly to check they’d sent the results to the clinic - they said they had. Why I was expected to be the middle man communicator is fucking beyond me, but nothing would have happened without me doing that admin and I RESENT that so deeply. The only movement happened when, sat in an in person doctors appointment, I asked the GP to directly call the Clinic and I watched them speak on the phone to one another. The Clinic had also told me on a phone call that the doctor who was assigned to the clinic had recently left so they were simply waiting for the next one to start. ‘One’? Great. But they got in touch eventually with a date for my phone appointment - it would be the last day in September.

September: The day before my call with the LC Clinic, I wrote down all of my symptoms on a piece of paper. I wrote down all of things I had tried to combat them or help ease the pain. The call lasted just over an hour. It was a man who was clearly new to the role, like I had been told, because the shit he said made me want to scream. The call involved a very long survey of symptoms and my ability to do different activities, and how sick I felt like I had become overall compared to my past self. I felt very attended to over this part of the phone call, because whenever I had spoken to the GPs, they were always in such a rush. But then we got to the business end and I asked what they could do to help. He told me pain wasn’t something they were ‘really able to treat’ because ‘pain is so different for everybody’ and ‘your muscle pain might not even be related to Long Covid.’ Pre-Covid, I never even got sick. I have had the flu once. But I was never sickly. So you are telling me that this one symptom, named as one of the top Long Covid symptoms, isn’t LC after all? Literally what is the point, and where is the logic, or the effort, or anything at all?

I asked if he was keeping notes about all my symptoms because I was now going to be applying for PIP and they would be getting in touch with any health professionals involved in my case to confirm the gravity of my symptoms. It just so happens that this man on the phone, a Dr Gardner, also started going off on one at the very end of the phone call about how Long Covid was such ‘a very British thing.’ He told me other countries don’t have Clinics like this, and started to infer that it was a British attitude to be so fatigued (or to pretend to be fatigued, is what I was hearing…) in order to stay off work. Full on benefit scrounger accusations coached in scientific pontification - and the kind of shit that someone says that only lands ten minutes after the fact, after the phone call has ended, and it’s too late to say ‘what the fuck?’

Finally, wanting to know what the Clinic could actually do for me beside give me this very long survey and then call me a benefit scrounger, the man said the only thing the Clinic offers is a referral to The Breathing Programme: a 10 week course at Liverpool’s Heart & Chest Hospital. He told me that every single person that had gone through the programme had felt better afterwards and that if I wasn’t better, I would be referred back to the Long Covid Clinic and we would go from there. Even his attitude here felt very uncaring and pointed - like, everyone else has taken this so don’t even question it and you’ll just get what you’re given, good bye. I couldn’t believe I was about to go through another referral. I just hoped this one was smoother than the last.

October: I never heard from The Breathing Programme so I got in touch with them myself to enquire. They told me they had called me, I’d never answered, and because of that I’d been re-referred back to the Long Covid Clinic. I know, this sounds like a joke. I am asking myself why I’m even typing all of this out. I was also having trouble communicating by this point in the year because my symptoms had sent me completely nocturnal ie. I was asleep when their phone lines were open. I asked them if I could please arrange things with them over email because I just hadn’t had that call they claimed they’d made. They emailed me back at 7pm one evening to tell me they don’t arrange appointments over email. Via email. 7pm. Yeah. I’m not sleeping during the day because I’m lazy. I have a disease lmao. Their attitude trying to even arrange a time to speak to me was ableist. And I had to speak to the Long Covid Clinic to rearrange the referral as well.

November: I spoke to my GP about the insane sleeping problems I had developed and she said she would refer me to a sleep clinic. Say ‘referral, referral, referral’ three times in a mirror and I’ll appear behind you.

Late November: I have my PIP assessment call. It is depressing. The woman on the phone asks me at one point if I still have friends. I was pretty tired on the day but not at my worst. I answer the questions and crash afterwards.

Early December: I don’t hear anything from the sleep clinic and the GP hasn’t given me a copy of the letter or emailed it so I have no trust it’s even been sent, given this year. After an in person doctor’s appointment, I ask the receptionist to look at my referral to the sleep clinic and let me know if there’s a phone number on it at all. There was, made a note of it. Set an alarm to wake up early to call them, slurring on the phone. They tell me that the sleep clinic (The Sleep Station) lost funding for the Liverpool area a while back. Haha. If I hadn’t checked on this referral either, I would have been waiting forever.

Mid December: Calls with the Breathing Programme begin. 2 so far. Now, consider that this is it. This is the ONLY thing that the Long Covid Clinic have referred me to. This is the thing they claimed had helped EVERYONE they had sent over there. And the first call I have is the big reveal: the only thing the Breathing Programme can do for me is graded exercise. Graded exercise, as in, the thing that has been taken out of the guidance for people with chronic fatigue because it has done more harm than good. Graded exercise, as in, the thing everybody from the ME/CFS community has told me horror stories about. They’ve said graded exercise and education about it. Nice, nice. Nice. Nice, nice, nice.

Also mid December: The Breathing Programme tell me they can’t start graded exercise - not that I’ve agreed to do it lol - until I get a POTS diagnosis. They say they have already contacted my doctor to request this. I speak to my doctor on the phone the next day and she says she can see no contact from them. I say, well, can you arrange a POTS diagnositic text anyway? No, she needs to see it has come from them and not me. Hated that. She says she will get in touch with them but I’m already thinking about how all I do is go back and forth between different doctors. I’m wondering where these missing letters and emails disappear to, like socks in the washing machine, except it’s lots of little pieces of my sanity going bye bye.

Late December: I see a letter at the door and it’s from PIP - my application is unsuccessful. I will read it properly in the new year but I cannot emotionally deal with it at the moment loool. I only scanned it but the bit I saw was essentially saying I was too articulate on the phone and that I also write articles online… I mean, does anyone know how you are supposed to articulate the state you are in without articulating the state you are in? Psychic powers? A documentary? I don’t know what I am supposed to do. It’s a joke. Nice way to end the year. My mistake in this whole process might be having hope for treatment when treatment for post viral conditions throughout history has been… non existent. Suspicious. Bad. Should I even be annoyed about any of this when there is no cure in the first place? What am I expecting? And in fact, am I doing myself more harm just by doing part-time NHS administration. So much time and energy. So much sadness, too.

2022

Mid January: I record this podcast with my friend discussing everything that has gone on and the emotional toll - https://anchor.fm/gabrielle-and-zarina/episodes/A-Year-of-Long-Covid-e1d5p5d

Late January: When I was speaking to the Long Covid Clinic last year, they were based in Aintree hospital. The appointment I have is in a health centre in Speke..? It turns out to be a game-changer. The doctor explains that his team have taken over the LC Clinic. It’s a full reset. I have to catch him up on the symptoms I’ve been facing for the past year. He says The Breathing Programme have been in touch because everything sounds like PoTS. He does a standing test with me - it involved taking vitals lying down and then taking them a few more times while I was standing for about 5-10 minutes (I have no idea how long it actually lasted, I got so dizzy). Because my heart rate shot up over 30bpm, I was diagnosed with PoTS. He said that within Long Covid, there seemed to be different phenotypes of patients occurring. Some people have particularly damaged lungs so their breathing is shot; others are dealing with fatigue and only that; and he said the category I seemed to be sat in was the dysautonomic one. By that he meant that Covid had messed with my autonomic nervous system - the bodily functions that should just happen normally, like blood flow and temperature regulation. This is why I have PoTS: my heart doesn’t do the normal thing when I move, instead it goes into overdrive, goes into tachycardia at the drop of a hat. It’s no wonder I am exhausted all the time when my heart is acting like I’m sprinting when I stand up. But this categorisation also explains why I have been running hot all winter, and why the summer heatwave left me bed bound. He said the nervous system being out of whack like this is probably why my pain has been so weird as well. He asked if I was sensitive to the touch and I said yes. It’s very weird to know your whole nervous system is making mistakes. This diagnosis and this conversation really clarified so much for me and made me feel validated and more secure. It was a delight, as well, to speak to a doctor who had taken as much of an interest in Long Covid as I had been forced to take. You would think doctors would just know this stuff, but a few days later when I spoke to my GP on the phone to ask for beta blockers for PoTS, he asked me what PoTS was. So, you know. That’s what we’re working with here. Gotta thank Paul at the Long Covid clinic for doing his job. He also advised me to start taking antihistamines so starting both those things now.

February: I only started taking the beta-blockers yesterday so this update is about to end but the first day brought on the worst headache I think I’ve ever had… but it also did slow my heart. I wasn’t feeling the mad pounding in my chest I’ve been so used to for the past year. I walked to the offy at the end of my road and back because I wanted to see how it would feel and I said to Michael that it was like my heart wasn’t in my chest anymore, like I felt dead. Dead because of how loud it has been for a year. I didn’t get out of breath walking because my heart rate wasn’t going mental to make me breathe harder… this is … idk, it just feels so normal. I feel normal. Maybe this is really going to work.

March-May: I did The Breathing Programme’s rehabilitation programme. I was really cautious about it because of fears of post exertional malaise, but I felt like I was able to find a happy balance in terms of activity and rest. I built up some strength. I would not have been able to get anything out of this if I hadn’t started on beta blockers. I ended up buying some hand weights when the programme came to an end because I was feeling really enthused by it all. I had missed activity so much.

June-July: I wanted to carry on with the bits and pieces of strengthening exercises I’d learnt from The Breathing Programme but the heat was kicking in and my ability to do things absolutely folded; the single biggest aggravator if POTS symptoms is heat. I was still on the beta blockers but it couldn’t top the weather and the consecutive heatwaves.

August: The Long Covid clinic had been checking in with me regularly. I told them in August that I’d been having a side effect whereby my fingers and the tip of my nose were ice cold. They took me of bisopropol (2.5mg btw) and suggested ivabradine. Throughout August I took ivabradine instead. Unfortunately, I had worse side effects on that, including flashing lights in my vision and numbness in different parts of my body. On a phone call with the Long Covid Clinic, I also asked for a referral to psychology to look into brain fog problems and ways to mediate that.

September: I’ve gone back on bisopropol because cold fingers are better than flashing lights. I also release this podcast episode discussing POTS.

— — — To be continued — — —