Covid-19: Second Wave

July 4th marked the end of lockdown in England (bizarrely, Scotland, Wales and Northern Ireland have different rules and timescales) with the re-opening of pubs and cafes. It didn’t take a rocket scientist to know that infection rates would rise once we all started to mingle and sure enough, with a lag of several weeks, confirmed cases of Covid have shot up in the past 14 days.

The official infection figures from the Government are inaccurate. Testing facilities are still inadequate (shame on you Boris Johnson) and there is talk of rationing tests to hospitals and care homes only, so we have no clue what the actual infection rate is in the wider population. The best data appears to come from the Covid Tracker app from King’s College Hospital/Zoe which has 4.3 million users and has been in situ from the very start of the pandemic, so I’ll quote data from that.

  • When lockdown ended on 4th July there were a predicted daily 25,748 cases of Covid in the UK. It beggars belief there were any cases!
  • Within 2 weeks this has risen slightly to 28,806 which was to be expected.
  • However, by the 4th September (8 weeks after the end of lockdown) cases started to rise in earnest and as of Wednesday this week (16th September) predicted daily cases have nearly tripled to 69,687 and are rising fast.
Source: BBC. Official figures. Actual figures almost certainly higher.

So what’s gone wrong? You only have to look at people’s behaviour to see why Covid is once again on the rise.

  • Not observing social distancing. I had someone reach across me in the supermarket the other day for some bread FFS.
  • Wearing masks incorrectly. How stupid do you need to be to wear a mask under your nose? And the amount of people who don’t ensure their mask fits correctly before venturing out leaves me mystified. Surgical masks are too big for me, so I tie a knot in the ear loops so that the mask doesn’t bag on my face and I don’t have to keep pulling it up.
  • Breaking the rules. My new next door neighbours are intelligent, church going folks who allowed 15 of their sons’ closest friends to meet for a party in their garden a week after lockdown ended. Let’s ignore the fact there was zero social distancing going on, and concentrate on the fact that until this week although you were allowed a gathering of up to 30 people these people were only supposed to come from two households. It did not mean you could have 30 random bloody strangers in your garden!
  • But the biggest factor by far was opening pubs and clubs. Young adults are reckless at the best of times, but when they’re drunk they will act in ways they wouldn’t dream of when they’re sober. It’s no surprise that the highest rate of new infection by a million miles is in the 20-29 age group.

You only have to read our local Facebook noticeboard to see the attitude towards Covid of young adults. Each week, the FB page posts the latest news about coronavirus and each week hundreds of young adults post lots of these 😆. They think the whole pandemic is hilarious, a hoax or wildly exaggerated. Their most common comment is “yeah, the killer virus which you need a test to even know you have!”. Their level of ignorance blows my mind and even our Health Secretary is concerned. They’re aware that even if they catch Covid it’s unlikely to make them unwell, but the fact that while infected they are spreading to the virus to everyone they come into contact with is still not getting through. The R rate in some parts of the UK is now 1.7, which means that for every infected young person they are passing it on to effectively 1½ other people, who are in turn passing it on to 1½ other people, who pass it on to 1½ other people………….it’s no wonder cases are spiralling.

Even some leading medical minds in the UK have been downplaying the recent surge in cases, saying that although infection rates are up hospitalizations and deaths are not. You can forgive ignorance in young people, but not in the middle aged and certainly not when they are in positions of authority.

The UK has always been around 5 weeks behind Europe when it comes to Covid, so we only need to look at what’s happening in France, for example, to see what’s heading our way. On 13th September, France reported the highest number of daily Covid cases since the pandemic began in February. Both hospital admissions and deaths are rising sharply and doctors in Marseille revealed this week that the 70 intensive care unit beds dedicated to COVID-19 patients in the city and the surrounding Bouches-du-Rhone region were all occupied by Tuesday. The situation in Spain is even worse and they have now exceeded half a million cases, the highest in Europe.

Where the UK went wrong at the start of the Pandemic was in thinking that what was happening in Italy couldn’t happen here. Yet the UK has surpassed the Italian death rate by tens of thousands. To think that what’s currently happening in France and Spain won’t happen here is insanity. We’re not even in winter yet. The weather is still warm and dry and we are congregating largely outdoors. Everyone agrees that infection rates will increase once we are forced indoors with re-circulated air and social distancing becomes that much harder. My mind boggles as to where we’ll be by December.

Despite the fact that our Prime Minister stated at the end of lockdown that if the R rate went above 1 we would go back into lockdown, this will never happen. The R rate is 1.7 in some parts of the UK but he is putting money before lives and not even considering another lockdown because he knows the economy would once again grind to a halt. I can see his point, but what price life?

Various parts of the UK are in regional lockdown, or at the very least have increased restrictions. Glasgow and surrounds, most of the North East of England, Manchester and surrounds, parts of West Yorkshire and Lancashire, Birmingham and surrounds, south Wales……………come on now Boris! It’s lockdown by the back door for heavens sake. Restrictions on visiting hospitals and care homes has begun in many places throughout the country. There is also talk of a national lockdown during the school half term holidays, but it’s not children who are spreading the virus. It is, and always has been, the 18-40s. Stop them partying and half the problem would be halted in its tracks. But as the hospitality industry is a significant part of the economy, our government would rather keep pubs open and people dying. This despite the fact that problem drinking has increased massively this year and is going to cost the country a fortune in treatment in the long term.

The official death rate in the UK from Covid is nearly 42,000 however it is more likely to be nearer 60,000 and counting. How many people have to die before our Government gets a proper grip on this killer pandemic?

Weekly roundup

I turned 53 this week, and the plan was for my parents to put up a little picnic and for us to go for a drive in the car at lunchtime, stop somewhere pretty and eat it (we’d normally go to my favourite restaurant for lunch, but have knocked that on the head due to the rise in UK cases of Covid). But you know what they say about the best laid plans of mice & men………..yup, they oft go awry.

At 2am Tuesday morning I woke to find Bertie pitter pattering around the bedroom. I’d forgotten to close his doggie gate, so I said firmly “bed!” but he stood there looking forlorn, head down, ears back and I realized that something was wrong. He’s had a severely herniated disc in his lower spine for years, but it doesn’t affect his movement and any associated pain is controlled by daily paracetomol and Gabapentin prescribed by his Vet. Very occasionally, though, it seems to get suddenly worse and I realized he was walking about because he was in too much pain to sit or lie.

I got up and gave him an extra Gabapentin and another dose of paracetomol. This is my agreed plan with the Vet when he has these acute episodes. I then put him on my bed and stroked and rubbed his back to try to soothe him off to sleep. It didn’t work and it broke my heart to see him in so much pain 😥.

His last really bad attack was in 2018. That time, he was given a week’s course of Tramadol to take which really helped and I had a few tablets left over. In my 3.15am stupor and without my glasses I couldn’t read the ‘use by’ date on the bottle, but I gave him one anyway. I then got him settled in his own bed and stroked him until he started to relax. At 4am I got back into my own bed and, although he woke again at 6.30am, we both nodded back off until 7.30am.

But he was obviously still in a lot of pain and could barely sit or lie down. So I gave him another gabapentin and some more paracetomol at breakfast. My dog walker came at 9am as usual and took him on a very short, gentle walk during which time she said he was totally fine and acting normally, which is a brilliant sign because if the disc slips any further it could paralyse him. It’s only when he tried to sit or lie down that the pain seemed to really bother him.

At 11am I gave him another Tramadol and waited for the Vet to call me with a plan. This was to max out his pain relief for a week in the hopes we could get the problem to settle down. So he’s now on gabapentin+paracetomol at breakfast, gabapentin at lunch, paracetomol at 4pm, gabapentin at 8pm, then tramadol at 10pm. It’s a good job my phone has reminders is all I’m going to say 😁. It’s working well, and although he’s still not back to his usual self he can at least get comfortable enough to sleep.

However, there was no way he could cope with being jolted around in the car so my birthday picnic had to be abandoned and we just had lunch at my parents’ house instead. The house we’ve all been basically stuck in since March. Such is life in 2020.

To add insult to injury, the day before my birthday Aunt Flo arrived. She’d been awol for 72 days but like the proverbial bad penny she keeps rocking up with suitcase in hand. Did it have to be on my birthday though? Really?! I started my periods at the age of 11. That’s 42 years of four weekly torture due to severe endometriosis and adenomyosis. Enough all-fucking-ready.

Speaking of torture, I’ve been awake half the night with pelvic pain. I’m going to have to bite the bullet and contact my GP about my current pain issues as nothing I’m doing is helping, and having had this flare involving both my pelvis and right arm for nearly a year now I think I need professional help. It’s pointless being referred to my local physio team, though, as they are clueless about hEDS so I’ll ask for a referral to the city hospital as I know they have a couple of physios with special training in hypermobility disorders.

It’s fair to say this week hasn’t been without stress, but I still managed to have a lovely actual birthday. My parents did their best to make the day special for me and I had lots of lovely messages from friends and family 😊. If you’d told me last birthday that this year we’d be in the midst of a global killer pandemic, with lockdowns and “social distancing”, fights in supermarket aisles over bog roll or the last packet of pasta shapes I would have thought you’d been eating too many magic mushrooms, yet I’ve survived (so far) and that’s all the gift anyone could wish for.

To end, I just want to send my love to any of my readers affected by the horrific fires on the American west coast. I can’t imagine what you are going through and I pray you stay safe and well x

It’s a good job I care

I shop for my parents’ groceries with Tesco online and have them delivered to their house. Last month, my Mum asked me to get her some kitchen foil “but I want the long one” she told me. So I make sure I buy her the 15 metre roll, not the 5m or the 10m.

Last week, she again asked for kitchen foil “but make sure it’s the long one. I asked for it last time, but I only got the normal one”.
Weird I think to myself because I know I put the long one in her basket. Maybe it was unavailable and they substituted it with the regular one? So I make sure that, this time, I get her the longest one in the entire shop. 30 metres. That’s almost the length of my house – surely to God she won’t need more than that?!

Today, I had to go to Sainsburys for some Gaviscon (for me) and Calpol (for the dog) as they haven’t had any at my local Tesco for a month. “Oh” Mum pipes up “if you’re going to Sainsburys please will you get me some kitchen foil? I only got the normal size again from Tesco last week and I need the extra long.” She looks at me accusingly.
I know for a fact this isn’t true, so I say “Are you sure Mum, because I know I got you the longest one available?”
“Yes I’m sure!” she snaps “It’s definitely not the extra long one. It won’t cover my roasting dish and the one I used to get from Sainsburys covered it no bother”.
And then it dawns on me. She doesn’t want the extra long one, she wants the extra wide one. FFS.

During the same visit, we have a discussion about Covid-19 and the rise in cases in the north of England.
“Aye” my Dad says sagely, “this bloody corra-virus has a lot to answer for”. It makes me chuckle every time 😁.

My Mum got a vouchure for a manicure and pedicure for her birthday in June, so she went to the beauty Salon this week to have her nails done. Quite why someone who has severe heart, lung and kidney disease and is at the highest risk of death from Covid would want to be in a confined space and close proximity to a stranger to have nails that never see the light of day painted defies logic, but I’ve long since stopped trying to reason with her. So I asked how it had gone.
“It was lovely” she tells me. “I asked the girl what she did while the Salon was shut and she told me she had to get another job. But it was miles away in…………..oh bugger, I can’t remember where she said now. “Where was that spot we got that chest of drawers from that time?” she asks my Dad.
“Cockermouth” he replies.
“Noooo” she says, rolling her eyes.
“Well that’s where we got the chest of drawers” he tells her.
“No it’s not!”
“Well we haven’t got drawers from anywhere else!”
“Yes we did! That spot down the long twisty road. Miles away.”
“Whitehaven? Workington?”
“Nooooo!” she shouts, getting frustrated.
“Actually Mum” I interject “I don’t give toss where she was working” because to be fair knowing that isn’t exactly going to change my life.
She huffs at me and sulks.

Eventually we get on to talking about restless legs. My biological Dad had what would now be termed Periodic Limb Movement Disorder and my Mum has always had Restless Leg Syndrome, so it was fairly inevitable that I would inherit RLS. My legs have ‘jumped’ since I was a small child but as I’ve aged it’s gotten much worse and there are now some days they drive me to insanity.
“What you need is some of my Ga-pen-t-i-an” she tells me, “it’s a wonder drug. One tablet and my legs haven’t jumped since”.
“Yes, but you weren’t prescribed Gabapentin for restless legs though Mum” I remind her gently, “you’re on it for the nerve pain following your Guillain Barre and shingles”.
“I don’t get nerve pain” she looks at me like I’m stupid.
“That’s because you’re on Gabapentin”.
“No it’s not!”
“Well, why are you on Gabapentin then?” I ask her as patiently as I can.
“For my restless legs!” she’s getting irritated with me now, so I just nod OK and we leave it at that. The thought of trying to explain that Gabapentin is a highly addictive anti-seizure medication with potentially psychotic side-effects, which has largely been withdrawn from use and would never in a million years be prescribed for restless bloody legs is way more than I can handle.

“Barrow!” Mum shouts out 2 hours later, as I’m tucking into the egg buttie I’ve taken for lunch. “That’s where that girl at the Salon was working during bolt-down” she looks at me triumphantly and I smile sweetly back, while inwardly congratulating myself for not completely losing my shit.

No-one said this caring malarkey was going to be easy, and they weren’t sodding wrong 😉.

Weekly roundup

I had a lovely meet up with my bestie yesterday. She is the only person I ever get to have an intelligent, emotionally astute conversation with and it’s so replenishing to my soul. You know you have the right person in your life when you don’t have to play a role with them – you can just be you.

I was quite tired though. At 3am the night before, something had woken me. I realized it was a yelp from Bertie. He sometimes barks in his sleep, so I put the lamp on low and looked over at his bed expecting him to be sound as a pound and dreaming, but he was sat upright with his left front paw up in the air 🙁. So I go over and inspect said paw, which doesn’t seem swollen or anything, but he won’t bare any weight on it. I was shattered and there was nothing I could do until morning anyway, so I pick him up and put him in my bed, stroking and cuddling him until he finally lay down and went to sleep. I, OTOH, didn’t drop back off until after 4.30am. At 5.50am, Bert was awake as usual. He gets up, right as rain, and poddles off downstairs for his breakfast. No sign of a limp, pain, nor anything else. Which is brilliant, obviously, but I still have no fucking clue what the 3am palaver was all about!

Schools went back on Weds for the first time since the start of March, so while they still had nothing much to do I nabbed my friend’s two daughters for a quick photo shoot. It’s taken a lot of work, but I’m happy with one of the resulting images I’m calling ‘Life Behind Bars’. I think it’s barbaric that anyone would ever keep a bird in a cage (I feel the same way about crating dogs unless there is some kind of medical need), but then the way we treat animals in general (horse riding, meat production, hunting) hurts my soul and is the main reason I haven’t eaten meat for over a quarter of a century. To quote Maya Angelou “when you know better, you do better”.

Time for breakfast, then I’m off to do jobs for my parents. I usually go on a Monday, but tomorrow I’m having to stay in to wait for delivery of a new tumble dryer. The old one still works, but being as though I got it second hand in 1989 I’m not sure for how much longer, so thought I’d get a new one while the going is good. I can guarantee, however, that the new one won’t last 30 years – these days you’re lucky if something lasts 5. They don’t make stuff like they used to, a deliberate ploy no doubt to keep you buying unnecessary shit!

Happiness

My bestie is coming for a visit today. We live about 30 miles from each other and are both sick, so we only get to physically meet every 3 weeks or so, which makes our get-togethers that much more precious. On our last meet up, she remarked that she saw a big shift in my mental health from recent months and asked what had happened. I told her I’d decided I’d been miserable, stressed and negative long enough and had decided to be grateful and happy instead. Simples!

But in order to be happy you have to know what makes you happy. It’s a harder question to answer than most people realize and will be different for everyone. It’s easy to say “if I had more money I’d be happy”, but there are lot of miserable rich people. “If I were married I’d be happy” but there are a lot of very unhappy married people. “If I were well I’d be happy” but there are a lot of unfulfilled healthy people. You get my drift.

So I actually sat down with pen and paper and wrote down what made me happy. Truly happy. I thought about the situations in which I felt totally at peace, fulfilled, passionate, joyful and absorbed, and analysed what it was about those situations which really resonated with my soul.

This is what I learned makes me happy:

  • Being creative
  • Being in nature
  • Getting enough quality rest
  • Sharing knowledge (ie through my blog and teaching photography)
  • Having people in my life I trust and value
  • Eating well
  • Accepting and loving myself (a work in progress every day, especially as my life has been filled with people who have been critical)
  • Living with integrity (I have this word on my bedroom wall so that I see it every single day)

It’s not a big list is it? And there’s nothing complicated about any of it. If I have just one day which contains all these things I feel truly, truly blessed. My health could be really shit on that day, but I can still be happy, joyful and fulfilled. In fact, I am on day 5 of a continuous thumping migraine and was awake half the night with back and arm pain so am tired, but I’m still excited to see my bestie and looking forward with joy to my day 😊.

So instead of focusing on all the things which were wrong, which was why I have felt so miserable in recent months, I am focusing on all the things which bring me joy. And the law of physics states that what you focus on you will manifest.

In ordinary day-to-day life happiness is a choice. My circumstances haven’t changed this month from what they were last month. I don’t have a new home. I don’t have any more money. I’m still caring for my parents. I still don’t have help in the house due to the pandemic. I’m still sick. I’m still single. But I am genuinely so much happier.

Happiness is something you need to work on because it’s so easy to fall into familiar patterns of negativity. I’m not a person who can do meditation, in fact it actually stresses me out, so I use my daily 30 minute dog walk/scooter ride to think. Regroup. Open my heart. Focus on joy. Let go of the bad shit and welcome in the good shit. Change my thought patterns. I’ll also sometimes play inspiring YouTube clips on my laptop while I’m getting dressed each morning, or listen to inspiring podcasts on my iPod while driving the car. They help me bring my focus back to what makes me joyful.

This is the only life we have. Each day is unique and precious. I don’t know of anyone who doesn’t want to be happy, but when you ask people what truly makes them happy they find it difficult to answer. And unless you know what fulfils you and brings you joy, how can you focus on achieving it?

Weekly roundup

Since lockdown restrictions ended in June it feels as if the pandemic is over, masks aside, and as the cases where I live are now low we are all fairly complacent about the situation.  I can’t even remember the last time I talked to someone about Covid, which shows how not on our minds it is and social distancing seems to have been largely abandoned.

However, experts continually warn of a second wave.  The weather has definitely turned, it’s noticeably wet and cold, and as we dive into Autumn everyone is going to be stuck indoors together.  Children are finally back at school full time this week after being off since March and, while infection control measures are in place, kids are notoriously bad at following the rules.  My sister in law is a teaching aid and had only been back in the classroom for 3 days in the summer with a restricted number of students before she caught a cold.  And if you can catch a cold, you can catch the much more infectious Covid-19.

My niece is a police officer and she had to be tested for Covid this week after displaying symptoms.  Turned out to also just be a cold but who knows about the next time?

My parents’ behaviour worries me sick.  My Mum is at the highest possible risk of death from Covid infection, yet she and my Dad went to a packed supermarket this week because “it’s something to do” and both have long since abandoned washing their hands the second they get back home.  They also allow everyone and his dog into their home including my police officer niece who is working up close and personal with members of the public and has managed to infect herself with a cold virus, and Tesco delivery men who are visiting hundreds of other homes every day.  WT-actual-F?

I’m still largely staying home and avoiding contact with people like the plague and have no intention of altering my behaviour any time soon.

On to other topics.  My downstairs toilet is leaking where the water inlet pipe meets the cistern.  It shouldn’t have been difficult to fix.   There’s an isolation screw on the inlet pipe which you can turn to shut off the water supply, which allows you to fix any issues.  Only mine doesn’t work.  Of course it doesn’t.  So now I’ve got to shut the water off at the stop cock.  Only my stop cock is old and prone to leaking, so I avoid touching it.  I’ll no doubt fix the toilet leak and end up with a much worse stop cock leak and have to get the plumber out.  FFS.  I need my new house to come along soon because living in a 300 year old cottage sounds romantic but is just a goddamn pain-in-the-arse money pit.

I checked my new online gallery this week and was highly excited to see that my photographs had been added to six different people’s carts 😮.  So I waited to get the email telling me I’d made my first sale…………….and it never came.  According to Google, up to 70% of all add-to-carts are abandoned before checkout.  Er, WTH?  I mean, I’ve occasionally put small items in my Amazon basket and then changed my mind or got them locally instead, but would I be doing that with a piece of art worth over £1000 it’s taken me ages to choose?!  So to all those people who add stuff to their online shopping baskets with no sodding intention of buying anything, spare a thought for the person selling and whose hopes you’re raising then dashing and use your Favourites or Wish List instead.

My stomach is rumbling so it must be time for breakfast.  I am currently as fat as a whale and am trying really hard to ‘be good’.  I spent the gross domestic product of a small nation on organic fruit this week at Tesco and only allowed one teensy tiny bag of Haribo Gold Bears into my basket (I need them for those days where a peach or a pear just doesn’t cut it 😉).  Why is it so easy to gain weight and so fucking difficult to lose it – answers on a post card please.

 

 

Limits

I don’t look sick.  At least, not after I’ve put a blob of blusher on my pasty white cheeks, and concealed the purple circles under my eyes which make me look like a heroin addict, and if I don’t use my crutches, or my Oval 8s, or my mobility scooter and my arm isn’t in a sling (the 2 other braces I never leave home without, and the TENS machine which keeps my back pain manageable, are mostly hidden under clothing).  And because I don’t look sick, I’m treated like I’m healthy.  Obviously.

Even people who know I’m sick treat me like I’m healthy.  I’m not quite sure why that should be.  Maybe they just forget? (I wish I could!).  Or maybe they’re not aware of just how sick I actually am.  Or maybe they’re in denial.  Who knows.   But because everyone and his dog “forgets” or doesn’t know I am sick, there’s a LOT of pressure to be healthy.  Which I’m not.  Obviously.

Mentally, I am as motivated to do stuff as I was before I got sick.  Combine my eagerness to do stuff and the continual pressure from other people to do stuff and it is massively tempting to do stuff I shouldn’t.

I drove past a little wood near my house the other day.  It’s full of heather which is currently in full bloom and looks spectacular.  “That would make a fabulous backdrop for a photo” I thought to myself.  So today, with dog in tow, camera slung over my shoulder and my arm still in a sling I toddled myself off to said wood to take a couple of photos.  It’s about a 10 minute walk from the car park, on the flat.  Do-able on a good day and today wasn’t a bad day.   I got to where I needed to be, tied the dog to a tree so he didn’t wander off and took my pictures.  Halfway through I literally felt my energy draining out of my feet and I started to feel queasy and light-headed.  I mentally stamped my foot in frustration.

By the time I’d finished taking my pictures and walked the 10 minutes back to the car I felt like death warmed up.  I had lost all colour in my face, wanted to throw up and was so foggy-headed I can’t even remember the 4 minute drive home.  I had to immediately lie down and even though that was three hours ago I still feel like shit.  My head is thumping, I’m struggling to think straight, I’m dizzy, my hips are killing me and I feel properly queasy.

I really enjoy public speaking and I think it’s something I’m fairly good at.  Consequently, I am constantly asked by various camera clubs to give talks and demonstrations which would earn me some much needed cash.  There’s nothing I’d like more, but I turn down virtually every request because I realistically know that it’s all too much.

My photography friends are constantly asking if I’ve entered this competition, or that competition and simply can’t understand when I say “no”.   Two people at my new club have asked if I’ll mentor them, and I’ve had to say “no” (so hard to do when you’re trying to fit in and make new friends 🙁).

Now I’m selling some of my pictures, there is a lot of expectation that I will be churning out new work at least once a month.  And while that would be do-able if I were healthy, it absolutely is not do-able because I’m sick.  I can only take pictures, and edit them, on a ‘good’ day (and I use the term relatively) and then only for very short amounts of time.  And if I’ve used my energy for the day doing photography I don’t have any left for other things, like bathing or cooking or laundry or doing my Tesco shopping.  Consequently, it can take months to produce just one photo.  I was working on a new image last week and didn’t even have a wash, let alone a shower, for 3 days and lived on oven chips and bananas.

You have to possess super-human emotional strength when you are sick.  The strength to ignore other people’s expectations, the strength to resist the pressure to join in with healthy activities and the willpower to fight your own desire to want to do more than you know you’re capable of.  It’s a lot, and even after 25 years of illness I still give in more times than is good for me.

It’ll take me a couple of days to get over today’s little photography outing and during my recovery nothing will get done.  I won’t eat properly, dirty dishes will pile up on the kitchen worktops, I still won’t get my shower, and the laundry in a heap on my bedroom floor waiting to go in the machine will no doubt still be there on Saturday.  Was it worth it?  Depends on whether I end up with an award-winning photo or not 😁!

It’s a fine balancing act.  Despite my illnesses I still have to have a life, otherwise what’s the point?  But I’ve been sick long enough to know my limitations and even though I do cross the line now and again it’s not something I make a habit of – the consequences simply aren’t worth it.  Even after all this time, however, I do still struggle with other people’s expectations of me.  After a couple of decades it’s wearing on my soul to keep saying “I’d love to, but I can’t” and to watch everyone go off and have fun and be left at home alone for the six millionth time.  I’m sure most people just think I’m massively anti-social – even though they know I’m sick it doesn’t seem to compute that this would limit my life in any way!

It’s tough to have to constantly police your own activities and reminds me (as if I need reminding) of how strong we all are.  Every second of every day.  Yet we receive no recognition for the war we fight or the sacrifices that we make.  Quite the opposite.

Weekly roundup

I have woken this morning with a banging migraine, so this post will probably make as much sense as Boris’ current Covid measures.

The reason for said poorly noggin is probably that I spent hours yesterday finalizing my new global online photo gallery.  Four of my pictures are now for sale as stupidly expensive limited edition prints 😮.  It’s both exciting and terrifying.  I mean, it’s little old me in my bed – how can I possibly be charging upwards of £500 for one of my photos?!  However, looking at similar works on the site I think mine are just as good and some people are charging 3 times that for their images (though admittedly they are bigger than mine, as I only have a little camera).  I’m not including a link to the gallery here, as I try to keep my ‘sick’ life and the rest of my life separate, but if anyone might be genuinely interested in a print either now or in the future and isn’t just being nosey leave a comment and I’ll email you the url.

I’m at a loss as to what to try next to fix my oh-so-sore elbow.  It was both taped and braced continually for 4 months, and now I’m resting it using a sling but nothing seems to be helping.  Not sure what to do for the best and this is when I’d kill for professional advice :-/

I can’t believe how well my doggie gate around Bertie’s bed has worked.  He’s woken me at the crack of dawn for over a year now, to the point where I was seriously sleep-deprived and at my wit’s end.  The first week of using the gate he fussed and barked to be let out at 5am but I simply ignored him, so he gave up and now stays peacefully in his bed until the alarm goes off, yayyyy!

A field near my house is being used for Motocross practice.  The motorbikes were on the go almost continuously for 12 hours last Saturday and regularly ride round and round and round until 10pm at night.  The noise is horrendous and half the village has complained to the local council……………..who can do nothing about the situation.  Private land can, apparently, be used for motorbikes for 28 days of the year between the hours of 8am-11pm and there is bugger all anyone can do about it.  This fucking country has gone to the dogs and is almost lawless.  My new home had better hurry itself the hell along so that I can escape this noisy goddamn village.

Other than that I have nothing else to tell you.  The weather has turned here in the north of England and autumn feels around the corner.  After months of the best spring and summer in years I have to admit I’m not looking forward to the dark, wet, cold days and having to wrap up like a spaceman just to take the dog out, not to mention the wet, muddy paw prints all over the house from His Majesty.   Add to that the credible threat of an increase in Covid infections and I think I’ll just stay in my bed from now til next April 😁.

 

 

 

 

Mental Health & illness

Although this post is entitled “mental” health & illness I think the words “mental” and “psychological” should be banned if used in conjunction with the word “illness”.  The words “mental” and “psychological” imply we have some kind of control over the situation.  We just need to get a grip and be more positive.

I wrote a post recently about doing just that.  I’ve been feeling really down in recent months and needed to give myself a good talking to.  And it worked, because my ‘down-ness’ was not clinical depression or the result of new illness.  It was just ‘down-ness’ (for want of a better word).  I’d been through a lot of stress, was exhausted and had got stuck in a rut of negative thinking and feeling sorry for myself.  Changing my thought process, taking more rest and relaxation, and reminding my body that the acute stress (ie lockdown) was over and it could chillax was what was needed.

It’s a very different beast when we talk about mental health in relation to illness.  We should, instead, be talking about “brain” health & illness, which would be a much more accurate description.  There is an excellent video on YouTube from the neuroinflammation, pain & fatigue laboratory in Birmingham USA which describes the brain inflammation which results from illness, be it bacterial or viral:

Although the video talks mainly about depression & anxiety, you can add to the mix other so-called ‘psychological’ issues such as hallucinations (visual such as migraine aura or auditory such as tinnitus), sensory processing such as light, sound and/or touch sensitivity, ‘brain fog’, memory problems, confusion, information processing disorders, speech problems & dyslexia type symptoms.  In other words brain problems, including those of so-called ‘psychological’ origin like depression & anxiety.

Anyone with a chronic illness which changes their life beyond all recognition is going to be prone to depression and anxiety, especially if we suddenly have no income as we are unable to work.  It’s a normal emotional reaction, which is why this type of depression is called “reactive depression”.  That’s not what we’re talking about here though.  We’re talking about the brain symptoms associated with illness, of which there are several, and the video above does an excellent job of explaining why we have brain symptoms when we get a bacterial or viral infections.

These types of brain symptoms associated with illness aren’t going to get better with CBT or therapy.  That’s because they’re not emotional responses.  They are physical responses, over which we have zero control.

Most cases of M.E. start with a viral infection.   The brain mounts a pro-inflammatory response as discussed in the video and what should happen is that after a few days the infection is killed off and the brain re-sets back to homeostasis, ie normal.  But in M.E. that simply doesn’t happen.  Instead, the brain appears to mount an ongoing response.  The infection is dead, but the mechanisms which re-set the brain back to homeostasis don’t work and the brain still thinks the body is under attack and needs ‘help’.

As beautifully explained in the video, when we are under attack from viruses or bacteria we are made to feel ill (‘malaise’) and exhausted so that we are forced to rest, which allows the immune system to use all our energy and resources to mount a decent defence against the invader.  The invader is killed, the immune and brain response subsides and we start to feel better.  Only in M.E. the immune and brain response doesn’t subside despite the fact the invader is dead, and we continue to feel utterly exhausted and ill.

I firmly believe that M.E. is easily cured.  Not treated, cured.  I don’t believe it’s a complex illness which differs between people.  Quite the opposite.  I believe it’s a simple immune & brain response to an invasion.  The differences in severity of M.E. is easily explained by the severity of the immune & brain response, as explained in the video.   The type of invasion, ie infection such as glandular fever or meningitis, mould exposure, immunization etc. is irrelevant because the brain & immune response is the same regardless.  It just gets stuck turned on and if we can find a way of turning it back off we would be cured.  Simples!

Only, of course, the immune and brain response isn’t simple at all.  It’s a massively complex and orchestrated response, which is why it’s taking such a long time to crack.  But crack it we will and in the end it will be a one drug fits all cure – I believe that wholeheartedly.  There has to be a way of breaking the cycle and telling the brain and immune system to stand down.  We don’t know what that is yet, but one day we will.  And as I’ve said before, if Covid-19 produces “post Covid M.E.” in a significant number of people we stand a much better chance post-pandemic of finding the answer than we did pre-pandemic.

I used to apologise all the time for my brain symptoms.  I used to call myself “dippy” and “stupid”, feel embarrassed by my forgetfulness and confusion, and constantly berate myself for not being able to cope in the world.  Then I had a light-bulb moment.  I am ill.  My brain is injured by my ongoing immune response to a non-existent invader.  I wouldn’t apologise if I’d broken my arm, so why should I apologise for having a broken brain and immune system?  I have no control over the situation any more than I would have control over a broken bone.  So now I tell people I have a brain injury, which I do, and I make no apologies or excuses for it.

Insect Bites & MCAS

With the benefit of hindsight, I know I’ve had Mast Cell Activation Syndrome (MCAS) since the day I was born.  The signs were all there (fatigue, dermographism, flushing, itchy skin, headaches, GI issues) and I’ve always had a problem with insect bites.

As a child, when we went abroad on holiday I was seemingly the only person to get bitten by mosquitoes.  I would break out in circular wheels the size of a 50p piece and the itching would drive me to distraction.  No-one else in my family was ever bothered by the blood-sucking little critters, just like no-one else was floored by the heat.

Photo of insect bite

Fast forward to my forties and the insect bite reactions were getting out of hand.  This one was the result of an innocent nip by some tiddly unseen bug and it landed me in A&E barely able to put weight on my leg.

As I mentioned in this week’s roundup post, I was stung by a bee recently.  I didn’t know the poor little thing was having a kip on my garden chair and I knelt on it by accident.  Within minutes my knee was starting to swell and turn bright red, so I put some bite cream on and waited for my leg to stop itching to the point of insanity.  It didn’t, and by day number 4 I was on the phone to my Doctor asking for some steroid cream!

Here’s a timeline of how the sting looked over the week.  Doesn’t look that bad does it, but I swear my leg itched so much I wanted to chop it off and my whole knee was swollen and boiling hot to the touch.

Bee sting

By Day 7 the sting site was fading and the itching had calmed down so I stopped using the steroid cream.  Big mistake.  48 hours later I wanted to scratch my leg off again, there was an egg-sized lump on my knee and the sting was back to looking like this:

Bee sting2

My mast cells clearly weren’t done with me.  This time, though, I also felt quite unwell.  My brain was like mush, I felt nauseous, was very fatigued and when I sat down in the evening I felt an anaphylactic reaction coming on out of the blue.  For me, it starts with a head-rush and a feeling like my brain is exploding, followed by palpitations, muscle cramps, pins & needles in my bum (as a result of effects on my bowel and intestines I imagine) and just generally feeling not right.  I’ve learned over the years to breathe through these reactions and often, if they’re relatively mild, it does help them not to escalate from a Grade I or II reaction to a Grade III or IV.  I took my blood pressure and it was 99/52 (it would have initially been high when the head-rush and palpitations started, but for me it then tanks).

This all happened last night and needless to say I didn’t sleep well.  Histamine is a wake-promoting neuro-transmitter and when I’m having a mast attack I always have trouble staying asleep.

This morning I feel……….weird.  Kind’ve hung over like I’ve spent the night partying and didn’t get in til dawn (I wish 😉).  My brain has gone awol, I’m dizzy and not quite with it and just feel generally not well.  Super.

Photo of bullsye insect bite reaction

I’ve no idea how long this sting reaction will last.  I was bitten by a mosquito in a local wood a few years ago (yes, I know it looks like a tick bite but it’s not) and although the redness eventually went with the use of steroid cream the itching at the bite site went on for six lonnnng months!  And that’s how you know you are reacting to insects in ways that other people simply don’t.

Not much is written about this exaggerated response to insect bites and stings in the literature on Mast Cell Disease.  There are papers on acute anaphylaxis following stings, but nothing about these protracted, over-reactions we masties have to contend with or how we should treat them.

I’m off to shove some more steroid cream on my leg and wrap a cold flannel around my knee because it’s currently in the fires of hell.  I might even be desperate enough to pop an anti-histamine and will just keep my fingers crossed I don’t have anaphylaxis to that too, because I often do!