Graham talks about life before, during and after covid and the impact long covid is having on his life and the support he has recieved.

before I became ill. Um, I was quite an active person. Um, I had been involved in scouting more or less since I was eight years old. Um, and more recently as a, uh, obviously, as a leader, Um, I've been a leader for about 30 years

Um, I'm married. I've got two grown up Children, or they say they're grown up. They're both in their early twenties, both still living at home

Um, so most of my activities would revolve around scout type things. So camping and a little bit of sailing. Um, you know, and we used to take our young people, uh, on expeditions and camping trips, um, cooking on open fires and that type of thing

Um, with it you'd associate with scouts. Um, my main, um, hobby, I suppose, um, is, uh, would be motorcycling. I've always been into motorbikes since I was, um well, since I was 16 and I could own a motorbike, But prior to that, because my dad, um, had motorbikes

Um, So I you know, I was a keen motorcyclist. I was an advanced rider, or I am an advanced rider. Um, and, uh, I would I used to volunteer as a, uh, a blood biker

Um, moving, uh, blood samples and platelets and donated breast milk and whatever for? For the NHS. October 2020 towards the end of October 2020. I tested positive for covid

Um, initially didn't feel too. I had a cough. Um, that just after I remember catching the getting the cough on a on the Monday, um, and normally, if I had a cold or something, um, by the within 24 hours, that would have turned to a runny nose

And in this in this instance, it didn't, um I didn't feel brilliant, but I didn't feel that unwell. Um, but by the Thursday, um, my sense of taste and smell had gone, and that was kind of by that point in the pandemic that was thrown, That was one of the red flags. Um, so myself and my wife, um, went to the testing station

Um, and within 12 hours, I got, uh, got a positive result back, um, following on from that over the next couple of days. Um, I just kind of stayed in bed, uh, but didn't feel I don't recall feeling particularly ill. Um, but luckily my wife, um, is a is a nurse, and we have a pulse oximeter

So we kept an eye on that, um, and it did start to drop. Um, and following on from that, we did speak to or, um my wife spoke to, uh, 111. And they advised just getting some, maybe seek advice from the hospital

So, um, in the end, we phoned an ambulance. Um, and they took me to the local local hospital. I was admitted on to the ward

Um, I have only vague recollections of being on on a on the initial kind of covid ward. Um, just amongst the groups of, you know, a number of other people in a similar situation. Um, but then So I was on the ward for a couple of days, and then several days later, um, I just I must have deteriorated

I vaguely remember being wheeled to, uh, intensive care. Um, I I vaguely remember it. It was it was dark, and there were no lights on

But again, I'm not sure whether that I imagined that or not, um, and more or less my next. So this was kind of the first few days of November. Um, 2020

Uh, my first. After that. My next recollection is I woke up, um, and I was in, you know, in intensive care

Connected to all kinds of pipes and wires and whatever. I'd had a, um, a tracheostomy installed, um, and it was two weeks before Christmas. Um, so initially, um, I did I vaguely remember being told that by an anaesthetist that the drugs that they use can induce, um, hallucinations and vivid hallucinations

And, um, some times they may be unpleasant. Um, for the most part, mine were, uh, and I did suffer that, but but for, I don't know, perhaps three or four days, um, I had a recurring one, which was very bizarre. Um, that sounded like a, um large, um, two cylinder motorcycle, like a Harley Davidson or something

Starting this was the kind of first thing in the morning. It seemed to be, um, it it started. It was really, really close by and then accelerated off at speed

And and that was it. Um, I had a weird hallucination with, um Well, I thought that it it seemed that there was, um, a a drone flying around the ward. Um, but in the end, it turned out that, um it was just the the kind of the computer terminals that we have on the IC u um are bolted to the ceiling, Um, on a kind of, um uh, a spring arm kind of thing that we can push a map away and pull them down

And it it must have been related to that. Um, but, you know, other than that there was one or two that weren't particularly pleasant, But, you know, and they were OK, um, the the physio I received in IC u was was amazing. Um, there was one physio in particular, um, who worked on, uh um, well, as mo as early as possible mobilisation

Because where by the time I woke up, you know, my my arms didn't function properly. My legs wouldn't. I have no muscle mass left in my legs

Um, couldn't stand up, but, um, and obviously, I was still ventilated at that point, but, uh, they were weaning me off it slowly. Um, so they they they were trying to to, um, use various techniques of force, force and air to try and reinflate your lungs or get the bottom bits of your lungs working and to to get, uh, any mucus and a anything out of your lungs. Um, she was like a tyrant, but she was fantastic

Um, you know, and very motivational to actually make you because you're there in IC. U you. It's I don't know, having nearly died and don't wanna really? Well, I didn't, anyway

Want to to be bothered doing anything. It was just such everything. Such a massive effort

So But she got me up and standing, sat out in a chair. Um, there was a number of times where once I'd been out of the chair, I'd expended that much energy that I couldn't stand back up again to get back into bed. Um, and they had to hoist me back into bed

Um, but fairly shortly. And they do seem to pick up relatively quickly by, um, New Year, Um, of 2012 2021 I assume. Well, it was 2021

Um, I was able to be, uh, um moved off intensive care. I didn't need any of the various, um, monitoring and the permanent ventilation. Um, so I was moved off on to a specialist, um, respiratory unit in the hospital that I was in, um, on New Year's day

Uh, 2020. Um, And how how they they they had a the The team on that unit was, um, incredible. It was

They worked closely with the intensive care and some of the staff. Well, a lot of the staff cross over, so a lot of the staff work on that unit, but they also work on the intensive care. So some of the staff, um, that I came across on that ward were, um, were familiar to me because they've been in intensive care as well

But the key thing I feel, um, is that it was kind of a completely integrated, multidisciplinary team. They had or, you know, speech and language therapists who came and, um, taught to me about, Well, help me with speaking and would swallow in, and you know, that kind of thing Occupational therapists who came and and work with, uh, one of the things I I suffered with was really bad pains in my arms. Um, so they work with me with that Physiotherapists come in two or three times a day to exercise and get me standing and walking

Um, so, yes, Um, a psychologist came to to, you know, to talk through what? What had gone on and and whatever else. Um, So So, yes, that was, um that was fantastic. Um, sometimes it's kind of, like, just really can't be bothered

Um, but, um, you know, I improved. Um, Now I look back, I improved fairly quickly. Um, under their help and guidance and whatever, I was walking down to the end of the ward

Um, you know, within a couple of weeks, um, in actual fact, um, the so the end of the second week in January, um, I was well enough to be able to to come home. Um, the period that I was in that war doesn't seem like it was only two weeks. It seems like you know, it seems like it was several months, but it wasn't

It was literally just two weeks, and then I was fit enough to come home. Um, so then that that was a great relief. Um, the occupational therapists in the hospital, um, had arranged, um, for, uh, various aids at the at the, uh, at our house, Um, kind of a commode and a washing stool

And, um, bits and pieces to that arrange for a rail to be installed. Um, so yeah. Yeah

So that was great. Um, for the first couple of weeks, a physio came And, um, you know, once or twice a week to help me with, um, continue the work that they've been doing in the hospital with the physio, particularly, um, my shoulders, but again, getting me more mobile and and walking. I walked initially with a zimmer frame

And so you get me mobile and, um, walking up and down, um, to the hall and the kitchen, um, to try and improve my mobility. Um, um, they then referred me to the community. Uh, physio team

I think the first set of physios were were out outreach from the hospital. Um, and the second lot of, uh, they that they referred me on to the to the community team. Um, and the the physio that came was fantastic

And, uh, there was an o. T. As well that came

And she was fantastic. The problem I found was that they kind of only were able to come once a fortnight. So, um and I did try and do the exercises that they left me, Uh, in the meantime, um, sometimes difficult to get the motivation to be able to to to do them

But I did do them as, as, you know, to the best of my ability. Um, one thing I would say. And I don't know what my experience would have been like, um, if the case had if it had been slightly different

Um, but as I said initially, uh, my wife is a, uh, is a district nurse. Um, her employer had been really good, and she'd had the time off, more or less whilst I was while I was in intensive care. Um, and that continued when I came home

Um, and, um, she became my kind of caregiver when I was at home. I do wonder a little bit, Um, how I would have got on, um had I not had her to look after me because I think the the carers and whatever might only have been able to come in once or twice a day. Um, so, you know, I do wonder whether she was able to come and look after me

Um, 24 hours a day. Um, she did was able to arrange for a kind of hospital style bed. That was one thing that the O

T s couldn't arrange. Um was somewhere to sleep and as our bedroom, because I couldn't manage stairs. Um, and particularly our house

We have a lock conversion. So it's two flights of stairs to to get to our bedroom. Um uh, and that was initially I couldn't manage that

I think I tried. And I managed three stairs, and that was it. It was like running the marathon

So So for the first, I don't know, six weeks or so. Um, I did sleep downstairs. Um, I went back to work on the first of April 2021 but only part time

Um, and I went back partly for, um I think the best way of putting it would be from for my sanity. Um, I was starting to get obviously very bored by that point and not being able to do anything. There's only a limited amount of TV that you can watch

So I was keen to to get back to work as soon as possible. Um, I'm fortunate in as much as that, Um, I work in i t And ever since the from the March 2020 we'd been working from home, so I had a I had everything I needed all ready to to be able to to return to work without actually having to leave the house. The, um, the occupational therapist came, did a workplace, you know, workstation assessment

I'm actually sat where I would work now, and we're still working from home. So, uh, this is where I work from. Um, and that was OK

Um, that went really well. And my employer were, you know, were brilliant. Um, just, you know, they said there's no pressure

Just come back when you're ready to come back, you know, full time. Um, And as it turned out, that was the first of June when I went back full time. Uh, and that was partly because, um, I I I got a new job

Um, it was a promotion at work. Um, I did. I applied and interviewed for it, and I got the job

Um, so I I went back to work on the first of June 2021. Um, where am I now? One of the one of the things that, uh, was a little disappointing when I left hospital. Um, I was told that I would have, you know, lots of follow up appointments

They have a a clinic, Um, on the ward, Um, which they showed me while I was in hospital. So this is the clinic to the day unit. You'll be coming back just to be assessed and make sure everything's progressing

OK, um, that hasn't happened. I've been back. So, like I say, I came out of hospital on the 13th of January

Um, and I've been back twice, and the first time was within a week or two of leaving hospital. Um, and that was literally all it was. Um, one of the physios did a did

Took a sample. A blood sample from my ear did a blood gas on it. Said it all looked fine

Um and, um and that was it. I was there for five minutes. Um, one of the things I I forgot to mention I they I was sent home with a, um with the ventilator because, um, done via a mask

And because I couldn't sleep, uh, laying lay down without it Um, And as it is, I still can't sleep. Um, completely flat without having a ventilator. Um, of some description, it's actually recently within the past three or four weeks

Been changed to a a CPAP machine. Um, but that came on the back of my second visit to the hospital, which was in November. Um, they took a a chest x-ray and said, Yeah, your lungs look fine

Um, but we think you need a We think you need a CPAP machine, Uh, as opposed to the, um, larger ventilator machine. Um, and that, as I say, that came a couple of weeks ago. Um, but other than that, I've I virtually I had one

I had one phone call. Um, from IC u A year to the day that I was admitted just to see how I was getting on. Um, but I've had I haven't had a great I don't feel like I've had a great deal of support from from the hospital

If I'm if I'm perfectly honest, Um, now I struggle. Still get. So if I climb the stairs, um, I'm out of breath

Um, I recover relatively quickly, but I'm still quite out of breath. Um, if I take the dog for a walk, Um, now I have to stop every few 100 yards just to catch my breath. But I suppose it is progressing, but it's not progressing as quickly as I would like

And, um, it I would like to for someone to be able to say, Oh, well, that's OK, that's normal. This is what you would expect. But I think I don't think they, you know, anybody really knows exactly

Um, how long this can take to to recover from? I don't know. I suppose it is very difficult. It's something that the new, um, and things are still developing, and a lot of people are out developing differently

You know, everybody's slightly different the symptoms, the extent that they had it in the first place. And, um, you know, the the ongoing symptoms. Um, most of the things that I did prior to being ill, um uh, I'm I've achieved or I'm well on the way to achieving

I think, um, I've not been camping, but I'm confident now that I now I've got the CPAP machine, and it's quite portable. Um, and I've got a, um a battery power supply that I bought for it that I I'd be able to go camping with with that machine? Um, I no longer I've stepped down as AAA scout leader. Now, unfortunately, uh, partly due to to the my ill health, it kind of puts your life into context

And I've decided a little bit that, um I should do things more for me and and my family, uh, rather than other people's family. Um, well, the the the politics were getting ridiculous. So that was another thing

Um, so, yeah, I've stepped down from doing that, and I'll do I'll still go camping, and I'll still go sailing. Um, the other scout leader and I have a have a sailing dingy. So we'll both sail that when I'm fitting up

Um, but we'll do it for us. We won't do it for, you know, other people's kids. Um, the main thing I can't do yet, um, which I'd like to do is ride the motorcycle

It's just I'm just not physically strong enough, but my bikes pretty big, um, are pretty heavy. Um, so I'm not confident enough to to ride it. I still have a lot of weakness in my hands

Uh, you know, my arms, um, pins and needles and things in, um, in my hands. Um, And I had a pre-existing, uh, back lower back injury from 2019 and that that was aggravated. Um, so that's still not not ideal

Um, but I spoke to my GP, um, in march, um, to say that I've got a lot of trouble with pains in my shoulders and the pins and needles in my hands and not being able to clench my fist and things like that. Um, and I was referred. Um, I believe, um, plus, I and I had a letter, um, in October, saying I had been referred, but I I did phone them up and say, um, I saw my GP in March

Why am I only getting a letter in October to say, um, I've I've just been referred. Um, they said, I don't know what how some of it works, but anyway, you know, sometimes that's how long it takes. And unfortunately, the other thing they told me at the time was there's currently you've had the letter

That means you've now been referred, but you won't be seeing anybody. There's currently a 26 week wait before they'll even look at your case and decide whether you need need an appointment or not. And so, um, you know, I don't know when that's gonna be 26 weeks from October would have been some time in March

Um, and it is now, you know, it's now March, so I don't know whether what's happening with that. I also mentioned to my GP that where the tracheostomy was That's one of the things that's it's annoying more than anything else. But it feels like there's pressure on my neck all the time, and I mentioned that and again, the GP said they would refer me to, um to E N t

But I've not heard anything at all. Um, I did chase them up, But again, um, I've I've not had anything back. They did send the check to see what's happening, but I've not heard anything back

And that was again three months ago. So, um, I don't know. It's difficult

I'm We had a holiday booked, um, for September 2020 supposed to be the holiday of a lifetime for our 25th wedding anniversary, and it was all booked and paid for. We were going for three weeks to Canada, hiring a, um, a motor home and driving up through the Rocky Mountains and and all that kind of thing. And obviously, that didn't happen in 2020

Um, that was rescheduled for, uh, 2021 game. It didn't happen. Um, we were still locked down, and I still wasn't nowhere near fit enough

I couldn't drive at that point. Um, so again, that's now been rescheduled for the September October this year. Um, I'm hoping that I'll be well enough to go, but I don't know

It's still a little bit touch and go, um, as to whether I'll be fit enough to go, but I don't know. We'll have to see Take that as it comes. Um, but other than that, yeah, I'm, uh I don't think I'm doing too bad, but yes, that's me

Thank you for listening..

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