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Adventures in Covid (?) Land

Updated: Aug 31, 2020

There are very likely almost as many covid experiences as there are people on the planet. This experience is solely that of my family. If your experience is different to ours it really is okay. I share/over share our experiences in case they are of use to others. If this is not useful to you I will not mind at all if you scroll on past.

I’ll start at the start. At February half term, some kids at my daughter’s school went on a school skiing trip to Italy - yes, that bit of Italy. When they returned, school asked parents to keep their kids at home for 7 days just in case. School were not able to enforce this. Many parents took the view, ‘My kid’s fine, I’m off to work, bye.’

Ten days later on the 5th March our daughter woke up unwell with a raging temperature and sore throat. She quickly began to sound like she smoked 60 fags per day (cigarettes for people outside the UK). I had never seen my daughter so ill.

I had my suspicions but didn’t over think it too much.

On 11th March, I received a phone call from my son’s school to go and collect him as he had a temperature. By now his school was pretty vigilant. He was waiting for me in the school reception area with the headteacher and the school nurse who urged me to get him seen by a doctor, just in case.

I managed to get hold of our GP surgery and both my kids were seen by a GP. I shared my son’s school’s concerns and the GP phoned Public Health Wales who replied, no need to test as they’ve not been anywhere. Ah, those heady days when we thought we had to travel to the virus. Little did we know the virus is only too happy to travel to us.

Anyway, the kids were declared ‘fine’. Viral thing, the usual. My son had such a raging temperature he got the shakes. Soon followed by the 60 a day smokers’ cough.

Friday 13th March, I popped into the GP surgery to collect routine prescriptions. Preparations were being made for it to be closed to the public.

We are a family of accomplished hermits. Our daughter finds life too loud and busy - we live in a small town, she attends a small school, feel free to make your own sensory processing/autistic spectrum diagnosis. The kids’ dad is the most successful hermit of us all. Due to a degenerative neurological condition, resulting disability and generally poor access outside of our home he has been socially isolated for years before it was trendy.

Despite our already hermit like existence, we began to self isolate.

On 18th March, I woke up with a temperature, the worst head ache and feeling like I’d maybe been run over. I, too, quickly developed the insane hacking cough.

On 23rd March, the kids’ dad, Rohan, woke up with the temperature and the aches. This is what I had been dreading.

Rohan has had MS for 20 years this summer. His MS trajectory has been steep. For 15 years he has been entirely wheelchair reliant. In recent years his health has generally become very vulnerable. He spends more time being unwell than well. There is a whole other blog on the MS roller coaster yet to be written.

In recent years, if Rohan picks up a cold he will end up in the GP surgery on the nebuliser. As well as the obvious neurological issues respiratory issues have become his Achilles heel.

With this in mind, while everyone else was panic buying bog roll (toilet paper outside the UK) I panic bought a nebuliser because I’d watched the GP surgery get shut down. At around midnight on the 16th March I found a nebuliser in stock, reserved it and drove a 50 mile round trip to get it the very next day.

When I became ill on the 18th March, I phoned our GP surgery to try and plan for Rohan’s care in the likely event that he too became ill. The GP sounded like she was reading off a script and she sounded scared. She refused to prescribe him any meds for the nebuliser. She could not understand that Rohan has respiratory issues but is not under a respiratory consultant.

He’s under a neurological consultant. At his last routine appointment the neurologist was discussing his respiratory issues and explained that they are likely neurological in origin. She has referred him for assessment for a CPAP machine. It might be a while.

So, the GP I spoke with refused to enter into any dialogue about what the plan might look like for Rohan. Every question was answered with, ‘He’d go to hospital.’ ‘Well, he’d go to hospital.’ After a while it started to sound a bit like ‘computer says, no.’

I gave up. I felt really poorly and simply didn’t have the energy to argue. It’s important to mention that the GP I spoke to is probably a lovely person and a decent GP doing her best. I’ve never met her. I haven’t met most of the GP’s in our surgery. We never get ill.

I took to FaceFriend to ask our wonderful friends for advice. They did not disappoint. We are exceptionally blessed. For hermits, we have the most incredible support network. It turns out that lots of people have nebulisers at home. One of our gorgeous friends posted us some meds. I was mightily relieved. Enough so that I luxuriated in feeling absolutely horrendous for a few days as a break from emergency planning for Rohan.

So, back to 23rd March. Rohan wakes up with the temperature and the aches. Paracetamol is good stuff. He’s doing okay. I had observed in the kids and in myself that, apart from the fatigue that could fell an elephant, by day 14 we were really pretty much over it.

Rohan was doing really well. As he got closer and closer to day 14 I almost dared to hope that he would get away with it. Day 12 he nosedived. We cracked open the box fresh nebuliser that I’d hoped we would never need and that we would laugh about what a silly cow/stress head I am. The meds our friend sent very probably saved Rohan’s life that night. The ventolin inhaler was doing nothing. It would have been an ambulance job for sure.

I love hospitals as much as the next person. If there is a chance you might die they are fabulous places full of wonderful professionals. But here’s where it gets a bit complicated. Rohan has an edss of 7.5 *last time he was assessed* This is a measurement of his disease progression. An edds of 10 would be indicative of being dead. For a few years Rohan’s neurology care plan has been ‘palliative’. My understanding of this is that his disease progression means that he is not a suitable candidate for disease modifying drugs. In my opinion this is not the same as a DNR. It has not been possible to contact the neurology team for confirmation of his care plan in the event of a hospital admission because they have been redeployed.

It’s worth mentioning that we’re in Wales. We love it and wouldn’t live anywhere else. Educationally and medically everyone’s needs are far better met in Wales than they were when we lived in England. During the pandemic, Wales has managed to maintain most of its services whereas England has cancelled cancer treatment, organ transplant, etc... Rohan’s neurology isn’t based in Wales. In a genuinely great bit of joined up thinking it is just over the border. This is why we can’t get hold of them.

My gut feeling has been to keep Rohan out of hospital for the reasons above and because he has very limited independent skills. If he is cared for appropriately it will take up a lot of staff time. If he’s not cared for appropriately, and unfortunately it does sometimes happen, I will not be able to support him because I won’t be allowed to visit.

So, I phoned the GP surgery, spoke with the same ‘computer says no’ GP. We went round in circles a bit as to why I couldn’t take a man who is hoist reliant and very poorly, breathless and wheezing in bed to an assessment centre a couple of miles away. A couple of phone calls later she arranged for a nurse practitioner to come round and assess him.

Remember, there is no testing. We’ve been nowhere because we’re hermits and the kids were given the all clear on the 11th March - just a generic bug. Even so, I intercepted the nurse practitioner at the garden gate, explained the situation and offered to do the assessments myself if he tells me what I need to do. I know, right. You can get a long way with a paediatric first aid course every 3 years.

Anyhow, the very lovely man said it was all good and he was happy to come in. He was wearing a polythene pinny over his home clothes. He had a pair of regulation gloves and a mask like the ones you get when you’re sanding your floors. I’ve seen better protected dinner ladies.

I think this might have been the point where we found out Rohan had a chest infection? My chronology might be a bit squiffy as no one was getting any sleep for weeks.

As Rohan became poorlier I moved downstairs and camped fairly comfortably in our living room. Rohan is a downstairs person. He has a bedroom and bathroom on the ground floor. Our daughter was very worried about her dad and also wanted to sleep downstairs. Our son camped in the living room too because he doesn’t like to miss out.

Rohan’s condition worsened so that his nebuliser meds would wear off after 3 hours resulting in mad coughing, wheezing, struggling to breathe.

By this point I had got hold of a fabulous GP. It’s a lucky dip who you get when you phone our surgery. This one is amazing. Incredibly sensible and pragmatic. She was willing to prescribe nebuliser meds as she understood the unusual nature of Rohan’s situation. She explained that nebulisers are not recommended at the present time because they produce vapour and if Rohan did have covid it would increase the risk of infection for me and the kids. She suggested measures I could take to keep us all safe. I explained the irony of the situation that a man who has been socially isolated for years through no choice of his own is unlikely to have left the house independently and gone and caught covid or anything else. Rohan’s hand shaking opportunities have been limited for some years. More likely that he has caught whatever he has from me and the kids. She agreed this was likely the case. I still really appreciated her advice. She agreed that on balance Rohan would likely be safer at home.

The super sensible GP suggested I monitor Rohan’s oxygen levels and pulse with a little finger clip device we got hold of off of the t’interweb, as recommended by the awesome nurse practitioner. When Rohan was extremely poorly his oxygen was dropping to 88% The usual threshold for hospital admission is 93%. His pulse has been 120+ due to copious amounts of ventolin and the effort required to cough, breathe, be upright, etc...

In addition to the first nurse practitioner visit we have had two more visits from another very awesome nurse practitioner. He is incredibly knowledgeable and supportive. He has given loads of practical advice and he completely understands why we want to avoid a hospital admission. He felt that, whilst it was likely that we had all had covid, if Rohan was chucked on a covid ward as someone presenting with a ‘cough’ if it wasn’t covid he’d be sure to catch it. He also explained that if Rohan has had covid it would be long gone by now with regard to testing and we’re likely looking at a pneumonia type infection.

By our 3rd nurse practitioner visit I was pleased to see proper kit being worn. The amazing nurse practitioner (the other one was merely great) asked why Rohan wasn’t being supported by the district nurse team. I have made enquiries but am no further forward as to why. I think it is maybe our fault because we cope fantastically well. Rohan has sailed below the radar and then when the covid (?) poop hit the fan it was like I was asking for the moon on a stick and no one had even heard of him or knew they had a chronically ill, disabled man on their surgery books.

Every time I phoned the surgery I would have to explain all over again what was going on for Rohan, he has a degenerative chronic condition, no I can’t get him to an assessment centre unless he’s on a stretcher. Eventually, I spoke with the practice manager and asked if she could just stick a picture of a wheelchair on his notes to save keep having the same conversation. It might be the case that Rohan is invisible because his care hours come through direct payments rather than CHC? Who knows.

We have been supported by an amazing GP, a good GP, a not great GP and a completely insane GP. I will be making a complaint about the insane one. His practice is completely unsafe and his suggestion would have resulted in Rohan’s death had I followed his advice. I completely get that the poor man is terrified. At this point he had lost over a hundred of his colleagues. We have been supported by incredible nurse practitioners. One of the pharmacists was very on the ball. We have the most amazing friends and family. And Rohan has an amazing PA. Whilst Rohan has been extremely poorly she hasn’t been working directly with him as we didn’t want to risk her getting poorly. Instead she has supported the kids while I’ve looked after Rohan. The kids adore her. She has kept them entertained, distracted and calm. Her skill set is worth more than £9 per hour.

Rohan is a superb patient. He doesn’t complain and he doesn’t panic. He is really good at being ill. He’s had 20 years practice. There has only been one occasion during his covid (?) adventure that he was scared he was going to die. By this point I had already been scared he was going to die a whole bunch of times. Maybe he had been too poorly to appreciate how poorly he was.

Obviously, lying down is unhelpful because you’re lying on your lungs. So every time Rohan needed the nebuliser I would hoist him out of bed and into his wheelchair. He was just so, so tired and very weak. Being hoisted is neither dignified nor relaxing.

Because night time has been such a frightening time Rohan tried to spend a few nights upright in his powerchair. He had a wildly optimistic idea that he would be able to tilt himself back a little and get some rest. I suppose humans are just plumbing with language skills so much like a blocked pipe every time he tilted the pipes blocked resulting in mad coughing, wheezing, fighting for air and repeat.

I hadn’t slept for weeks and from the living room where I was ‘sleeping’ with two mad children on the world’s uncomfiest sofa bed - yes, I know, 1st world problems, I heard a kerfuffle from Rohan’s room next door. I went through to find him looking like human origami folded up on the floor having just slid out of his chair. He has very little core control on a good day and was so weak and knackered at this point. Because we share a horribly dark and inappropriate sense of humour we were able to laugh about this as I unfolded his legs and tried to figure out what went where and hoist him off the floor. He has lost so much weight since he has been ill that hoisting him is a whole load easier than it used to be.

When I got ill I did not lose a single ounce. To say I am pissed off about this would be something of an understatement. It would also appear that I am stress eating, another 1st world problem, and will need to be cut out of the house when lock down is over.

Rohan is currently on day 40 of being ill. He is on his 5th lot of antibiotics and without wishing to jinx us he seems to be stabilising a little. His oxygen is hovering around 93% which isn’t amazing but is certainly better than it was. He is less reliant on the nebuliser. The ventolin inhaler seems to be sufficient. He is still breathless but less wheezy. He is coughing up less gunge. He has felt strong enough to do a few independent transfers - he has a bunch of grab rails and a transfer pole.

He is absolutely not out of the woods yet. It is his birthday this month. The other week I saw something online that I thought he’d like. I was too scared to order it in case I jinxed him. I’m feeling optimistic enough to start getting him birthday presents now. I was also ‘sleeping’ in my clothes. I didn’t understand why until I realised that I wouldn’t want to phone an ambulance in my pjs. Still don’t know why that was a thing.

As Rohan is beginning to understand just how poorly he has been he is disproportionately and hilariously grateful to me for my hit and miss Florence Nightingale efforts - I’m really not cut out for nursing. So we’ve had lots of, ‘However can I thank you enough?’ conversations. I suggested that we go to our really nice local restaurant when lock down is lifted in 2023. They do good pizza and good wine. Rohan said, ‘No, that’s not enough I feel like I need to give you a kidney!?!’ Oxygen is still low, probably a bit doo lally. As much as I appreciate the sentiment I am all good for kidneys thanks and were I in need of a kidney would I want his covid (?) addled one?

In the last few days the kids and I have moved back upstairs. The living room no longer looks or smells like a student bedsit. Our daughter’s anxiety is coming down a bit she is currently face-timing a friend for the first in weeks. I’ve had the most awful conversations with her. She’s been asking, ‘what will we do if dad dies?’

Interestingly, Rohan hasn’t been identified as an ‘at risk’ person and hasn’t had a letter. To be fair unless there is some sort of revolutionary improvement in wheelchair access he will probably continue to hermit long after lock down is lifted.

Enormous thanks to our wonderful friends and family. This journey would be so much lonelier and more frightening on our own.

If you’ve made it to the end of this blog well done! Now go and get yourself a big drink and stay safe. It. Is. Not. Like. Flu.


*Edit* 01/07/2020. 14 weeks post covid Rohan continues to be really bloody ill. Just completed his 7th lot of antibiotics. Still reliant on nebuliser and inhalers. Still no shielding letter.


*Edit* 31/08/2020 23 weeks post covid, still horribly bloody ill. Looking like bronchiectasis. To be confirmed...

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