Author Archives: Jak

Weekly roundup

I haven’t been feeling great this week.  The weather’s been boiling (30C) but I actually fare better in summer on the whole, and I haven’t been doing anything out of the ordinary.  So I was a bit stumped as to why I was feeling so exhausted, nauseous and generally rubbish when on Friday night Aunt Flo rocked up.  She’d been awol for 60 days this time but I should know better than to think she was gone for good.  So much for the average British woman entering menopause at 51 – I’ll soon be 53 and that bitch is still on the premises.

I had a lovely day on Wednesday, meeting my bestie down by the river for a picnic.  The weather was glorious and for the first hour we had the place to ourselves in blissful silence, but then more people started to arrive including a group of eight boys aged around 10 years old.  They hollered, squealed, screamed, dive-bombed the water and generally caused mayhem as 10 year old boys do and it was like a cheese grater on my brain.  I’m still pretty noise sensitive and simply can’t handle that level of racket, so I reluctantly had to call it a day as every nerve end in my body was protesting.

My bestie and I were discussing how overwhelmed and exhausted I constantly am, and how busy my life is.  I think she wonders what the hell I do with my days and to be fair so do I at times, so I decided to write a diary for a week and log all my activities.  Turns out living on your own and having to do every single little thing with no help, plus owning a dog and running my parents lives and home is a lot.  Add to that my photography, which I love but is massively time-consuming (you don’t get to be internationally successful at anything in life without a shit load of hard work), and it’s a LOT.  What I learned from completing the diary is that I’m doing the best I can to balance my caring duties, the essentials of running my life and home, and trying to do some things I enjoy like my photography, while also managing chronic ill health not to mention 8 years of peri-menopause and enough rest to function.  It’s a struggle and I don’t always get it right, but I need to give myself more credit for how well I cope, plus stop being so hard on myself and comparing my life to anyone elses particularly those who aren’t in the same leaky boat as me.

Thursday I found out I was one of 10 winners of a massive global photography competition.  I still can’t quite believe it.  Little old me, propped up in bed in my tiny cottage in the middle of nowhere!  The overall winner will be announced during a Zoom ceremony in September and the prize is a trip to Oman 😮.  Not that I am well enough to go even if I were chosen, but that didn’t stop me Googling Oman and daydreaming!  The organization are also going to donate €30,000 to Covid-19 research, which is more important than any holiday.

I was clearly on a photography roll this week, as the next day I discovered I had won 2 gold medals in an international photography exhibition based in India.  Go me! 😉

The weekend has been taken up with thinking about the bungalow and asking the Universe to help me secure it if it’s in my best interests.  The builder got back to me to say he was still interested in doing the work which is great, however I’ve written to my buyers to ask if they still want to buy my house and have had no reply as yet and that’s worrying as they were so keen – the thought of the effort involved in putting my house back on the market fills me with dread 😦  I want the bungalow so much I can’t even put it into words but will just have to try and relax and go with the flow, as much of the situation is totally outside my control.  I’ll keep you posted.

Intuition or wishful thinking?

As many of you know, I want (need!) to move house and in February was in the middle of purchasing a property when it fell through.  I was absolutely devastated, as I’d been looking for a suitable new home for 5 years and this one had everything I wanted but didn’t ever think I could afford and I’d been working towards securing it for months.

Looking back now, however, the house sale not going ahead was the best thing that could ever have happened to me.  I would have been moving the week before lockdown was announced to a property which needed total renovation.  The plan was for me to live in the one room annexe on the side of the bungalow, with a make-shift kitchen and horrible spider riddled shower room for 2 months while a team of builders made the main house habitable.  But, of course, none of this would have happened due to Covid and I would still be there now, 4½ months later, having had to live with no kitchen or proper bathroom during the pandemic.  The stress would have been unbearable, not least because I would have taken the bed bugs I didn’t know I had with me in my bed frame and would have thought I’d been infested with them at the new house which would have put me off living there forever!

Having put the failed move behind me, I hadn’t really given the bungalow a seconds thought………..until last week, when it popped into my head without bidding.  The thoughts were persistent and I couldn’t work out why I was suddenly obsessed again with the house.

On Saturday, bored with our usual walks, I decided to take Bertie out for his afternoon jollies to a beauty spot 10 miles away and for some reason decided to travel through the village where the bungalow was on the way, just for a peek.  It was just as I had left it and I got the warm, fuzzy feeling I’ve talked about before just driving past.  Weird, and I’ve never felt that way about a house before in my life.

I’m signed up for alerts on Rightmove for suitable bungalows in my area, and on Tuesday received an email about reduced properties.  And there is was, the bungalow!  It had been reduced by £10,000.  It’s almost as if my brain knew something was in the offing the week before and was gearing me up to start thinking again about the house.

One of the reasons the sale fell through was due to issues with the septic tank, which was in a farmer’s field.  So this morning I rang my conveyancer to ask if we’d ever heard back about the easement over the field, which is legally needed when the house is sold.  He didn’t know, but got back to me this afternoon to tell me that the easement was in place so if I wanted to try again to secure the house it was fine.

My next port of call is to contact the builder who I’d lined up to do the renovations, just to see if he’s still available this summer.  His answer will determine whether I still try to buy the house, or not.

I am someone who gets gut feelings about things and when I was younger I used to doubt and ignore them, but as I’ve aged I’ve trusted my intuition much more.  Which is why, when the house purchase fell through, I was so devastated – every instinct was telling me this was going to be my forever home, yet everything went belly up!  It really shook me and made me question whether I’d ever had intuition at all, or had it just been wishful thinking?

But the bungalow wasn’t even on my radar last week – it just popped into my brain and refused to leave.  Then literally a few days later I get an email saying the vendor had reduced the price, which makes me hope that he will be open to negotiation now where he wasn’t back in February.  It’s all just too coincidental to be chance.

So I will be making another offer.  And if it’s meant to be it will be accepted.  And if it’s not meant to be it won’t.  And if it’s not, maybe it’s just been filling a gap while the right house becomes available.

 

 

 

 

Weekly roundup

When your illness is being managed well you get complacent.  Cocky.  You do stuff that, when your illness isn’t well managed, you wouldn’t even consider because you think there will be no consequences.  I did that yesterday.

I’ve put quite a bit of weight on in the last couple of years and am over 9stone (126lbs/57kg) for the first time in my life.  I’m not eating or exercising any differently, it’s just middle age spread due to menopause and my metabolism slowing down.  I have my main meal at lunchtime because if I eat a large meal in the evening when I’m in bed it makes my reflux so much worse, then I have a sandwich or soup or whatever at night.  So I thought I’d swap my evening food for a Slimfast shake for a couple of months to see if I could shed a few pounds.  Big mistake.

All Slimfast basically consists of is vitamins, minerals and sweetener to which you add milk (which I tolerate well) to make a shake.  Perfectly innocuous right?  My mast cells didn’t think so and after only 3 mouthfuls had a complete hissy fit.  I’d forgotten how scary anaphylactic reactions are and how crap they make me feel 😟.

I’d already had a reaction to a new food this week, though it wasn’t the same type of reaction.  I bought a plain scone from Tesco, the ingredients of which shouldn’t have bothered me (I buy the Finest range wherever possible as they contain so much less additives etc.).  But they did.  My throat and tongue were prickly, tingly and itchy and my lips went slightly puffy.  I get the same thing if I eat anything with apples in, or the strawberry flavoured jam used in commercial doughnuts and biscuits.

Note to self: stick to what you know, even if you are so sick of eating the same old shit you want to scream.

Wednesday evening was our weekly zoom meeting at camera club.  It was our annual competition and I swept the board.  I should have been delighted but all I felt was fear.  After I started winning everything at my last club there was a lot of jealousy which turned into outright nastiness in some quarters and I do hope that doesn’t happen again.  I did get 4 lovely messages of congratulations, though, so at least some of the club members don’t hold my success against me.

I’ve succeeded in weaning my disabled friend off my help with his online grocery shopping and he had his first Tesco delivery this week.  He needed quite a bit of help sorting it out, which I don’t mind – I was confused.com when I first started online grocery shopping and it will take a few weeks for him to get the hang.  It felt fantastic to shed at least one of the huge responsibilities I’ve shouldered for the past 4 months.

Despite my warnings of infection and death my Dad is determined to go to the shops now lockdown is over, even though there is nothing he needs which is urgent or which I can’t get him.  So I’ve ordered him some masks to wear.  Initially I couldn’t get him to put one on, but when he saw a few other people using them he reluctantly agreed.  Why doesn’t he realize that at 80 years old he is more at risk than all the young people he sees out and about, and even if he got Covid and didn’t get sick he risks passing it on to my Mum who would die?!

As I’ve been getting a lot of migraines recently I decided to try a new pillow in bed.  I’ve gone for a memory foam for side sleepers which is supposed to be temperature regulating as I do get boiling hot in bed these days, and I tried it for the first time last night.  It felt very hard compared to my soft duck feather & down pillow and although it supported my head and neck well my back complained a bit as it was at a steeper angle.  The jury is out and I’ll just have to see how things go over the next week or so.

Today is Father’s Day and I’m taking my parents for a car picnic as it’s going to rain most of the day.  I feel absolutely knackered this morning and all I want to do is stop in bed all day and rest, however I’ll slap my usual smile on and try and ensure my Dad has a nice time because even though my parents drive me to distraction I know how lucky I am to still have them.

Stay safe my friends x

 

 

hEDS update

While my MCAS has been really good lately, the same can’t be said for my Ehlers-Danlos Syndrome and I have been in a huge pain flare since the end of 2019.  I have no idea what set it off and I can’t seem to get out of it, which is massively frustrating.  It’s probably hormone related but I don’t know that for certain and not having a medical professional to call for advice at times like this leaves me feeling like I’m floundering alone in the dark.  Which I am, let’s face it.

The pain is concentrated on my hips, SI joint and pelvis.  I’ve had issues with all three in the past, but usually if I wear my SI belt constantly, rest up and use my crutches for walking it will eventually settle down.  This time, though, none of that is really helping.

Nights in bed are the worst.  I haven’t been able to lie, let alone sleep, on my back or front in years as my back is way too painful in those positions so I’m a side sleeper.  But now if I sleep on my right side the pain in my left hip is unbearable, plus my right arm goes totally numb and if I sleep in my left side my left leg goes totally numb to the point where it’s actually painful.  *Sigh*.

I’ve tried taping my hips and wearing my SI belt while sleeping and although it does help a bit it’s not effective in reducing the pain to the point of being comfortable.

In addition, when I was first diagnosed with hEDS ten years ago I was having constant issues with my elbows, wrists and hands.  It took a couple of years but eventually when I started taping and found some kitchen aids to help my hands things settled down and I haven’t had any significant pain for a while.  Until this year, when for some reason it’s all flared back up again.  My right elbow in particular is sooooo sore getting dressed is like a daily form of torture and as I’m typing this my hands are protesting loudly :-/ .  I’m taping and bracing every day but nothing seems to be improving.

Hand in hand with the pain is severe stiffness which is painful in itself.  It started more than a decade ago but has ratched up a notch or ten in the past twelve months and my range of movement is diminishing by the week.  When you’re used to being hypermobile, being stiff as a board is totally weird and I can’t even bend down to put my shoes on let alone wrap my legs round head like I used to 😉.

Add to this my often daily migraines and my body is shouting to me that it is NOT HAPPY *stamps foot*.   I’m trying to placate it with Pringles and Haribo Gold Bears but the only part of my body liking those, it seems, is my waist line 😁.

If any of my middle aged Zebra readers have any ideas what’s going on or any advice on how I can help the situation please let me know because it’s irritating the shit out of me now!  Bare in mind, though, that we are still in lockdown and in any event I have anaphylaxis to acupuncture, massage and osteopathy and zero money so my options are limited :-/ .

 

Kinesy Taping

When I was first diagnosed with hypermobile Ehlers-Danlos Syndrome I was referred to physiotherapy for help and advice and was lucky in that my local hospital had one physio who had taken a special interest in hEDS and had some good knowledge on what, and what not, to do.

When she told me about taping my joints I initially poo poohed the idea.  My elbows in particular were so bloody sore all the time I was convinced the equivalent of a strip of elastoplast was not going to help, so I didn’t bother.  Two years down the line, however, I was so desperate I would have tried anything, so gave taping a go.  It helped substantially.

In hEDS, the ligaments are floppy and lacking strength, which means our joints move around far too much.  As the joints then continually over-extend this puts strain on the surrounding muscles, ligaments and tissues which then can sprain, strain, tear or develop other repetitive strain problems such as bursitis.  Placing kinesiology tape over the affected joint acts a bit like a second skin, supporting the ligaments and making them stronger so that they support the joints more effectively.

Which kinesiology tape should I use?

Like anything in life, there are good kinesy tapes and there are bad kinesy tapes, expensive tapes and cheaper tapes.  Everyone will have their favourites.  I personally buy Levotape from Amazon and am fairly happy with it.  If you have any relatively inexpensive tape recommendations let me know!

Kinesy tape is meant to stay on for up to a week, so the skin must be clean and dry before taping.  You can bathe with it on, so long as you are careful.  However, I’ve never managed to get mine to stay on more than 3 days no matter what I do, so the staying power of the tape will depend on how oily your skin is and the types of activities you do.

There are stickier tapes out there, however I am conscious that I have delicate skin because of my hEDS so don’t want something which is going to tear my skin off when it’s removed.  I can also have issues with itching when I use any kind of tape due to my MCAS and find I tolerate Levotape really well, so I’m sticking with it for now (‘scuse the pun 😉).

There are various methods of applying kinesy tape, depending on the type of injury you have or the type of support you need.  For example, I worked out I had “tennis elbow” (ie, lateral epicondylitis) on my arms so went on YouTube and looked up taping for tennis elbow:

There are various methods but this particular one seems to work well for me, although I don’t bother doing the holes for the hand and start the first tape higher up my arm.  If you type “levotape kinesiology tape” into YouTube you’ll find videos on all sorts of taping methods for various joints.

I initially found the advice to “stretch” the tape confusing, but it is important.  The stretch determines how tightly your underlying ligaments are held – too little and it’s ineffective, too much and it’s uncomfortable and can cut off your blood supply!  So in the video above, for example, he advises a stretch of 75%.  You achieve this by pulling the tape almost as far as it will go, then relaxing by about a quarter – it’s guesswork, obviously, but the more you use kinesy tape the more you’ll get the hang of how much stretch is needed.  I’ve taped my thumb before and only needed a stretch of around 40% otherwise the blood supply was affected and my thumb went purple.

Speaking of thumbs, I spent years having awful problems with the ulnar collateral ligament in the MCP joint (the base joint) in my thumb.  I spent a fortune on various braces and nothing helped, until I tried taping.  I used kinesy tape for about 6 months, which seemed to give the ligament time to heal, and have had no problems since and no longer use any tape or braces!  This was the taping method I used:

Levotape is twice the width needed for thumb taping, so I used to measure a length and cut it off the roll, then cut it in 2 length-ways.  The upside is that one piece of tape did 2 tapings, so it saved me money!

Lots of people say that rubbing the applied tape with the waxy side of the peel you’ve removed helps it stay on for longer, but that honestly hasn’t been my experience.  Whatever I do my tape comes off after about 3 days so taping can work out to be quite expensive.  However, on joints like elbows and thumbs braces are cumbersome and interfere with the working of my arm, so it’s much better to tape which still gives me a full, unrestricted range of movement.

I hope that’s been helpful and given you some pointers.  If you’re having joint pain and haven’t tried kinesy tape before, give it a go – you might be amazed at the results.

Weekly roundup

I am currently without a cleaner.  Mine quit because of a “bad back” several months ago.  I saw her in B&M shortly before lockdown and asked her what she was doing work-wise, only to be told she’d got a full-time post working in a holiday complex……….. as a cleaner. I wanted to kick her really hard in the shins.

I didn’t advertise for a new cleaner after my old one quit as I was in the process of moving to my new bungalow, which needed renovating.  Only of course the move fell through, and then lockdown arrived and any chance of having a cleaner disappeared into the ether.

By Monday, my kitchen hadn’t been cleaned in a month and was hazardous to human health.  I haven’t had the time or, more importantly, energy.  So I told my parents I wasn’t going to their house this week because I absolutely needed to sort my own out.  But cleaning and hEDS do not make good bed fellows.  I now can’t sleep at night due to my back/hip pain and my right arm is ridiculously sore despite being taped and braced.

elbow strapping

The effort of shopping for 5 people each week is also killing me, so I’m trying to wean my disabled friend off relying on me quite so much.  There are a few Tesco delivery slots becoming available now if you’re quick, so I’ve opened him an account and am asking him to do his own shopping which he’s capable of doing with a bit of guidance.  I’m also only taking his calls every other day, instead of every single day.  People who don’t have M.E. have no clue how exhausting “chatting” is.  To everyone else it’s a pleasant past-time but it can make me feel like death warmed up if I’m having a bad day plus my throat has been really sore for a good few weeks now (a sign I’m doing too much and my immune system is even more unhappy than normal) :-/

I’m not only feeling physically overwhelmed, but mentally overwhelmed.  The constant barage of paperwork which arrives through my letterbox is just too much and my stomach drops every time I see a new brown envelope on my mat because I know I will be asked to do something.  I am so behind it’s ridiculous, but every time I sort one request to do something out another one appears.  I’m currently sorting out my parents’ electricity bill.  Their recent statement says they used £450 of electric on one month, when they barely use that in six!  I’ve tried to explain to the company that nothing has changed, they’ve had no new appliances and while they have electric heating as there is no gas to the property April was the sunniest month on record and their heating was barely on!  It’s falling on deaf ears and the company want to increase their monthly payments to £200 – for 2 pensioners living in a tiny flat!!!

My H2 Famotidine repeat prescription continues to cause me headaches.  I spent 2 days this week trying to get through on the phone to the pharmacy (who simply never pick up), to ask if they had managed to get hold of the drug this month.  I’m told they’ve been allocated 1 box not the requested 2, but at least that keeps me going for the next fortnight while they try to secure another box and I keep ringing them and they don’t answer.  It’s all soooooo bloody stressful.

My life felt too busy, too exhausting and too overwhelming before the pandemic.  Lockdown has not helped one little bit and every fibre of my being is screaming out that it needs a month on a beach in the Maldives to rest and recoup.  Two hopes of that happening – Bob Hope and no bloody hope!

One lovely thing to happen this week, however, is that I was contacted by a couple of friends from my old camera club.  We usually meet up every four weeks or so for a coffee in Booths cafe but due to Covid haven’t seen each other in over 3 months, so they came out to my house now we are allowed groups of up to 6 people in our gardens.  It was blowing a gale, overcast, freezing and we did have a spot or two of rain, but I huddled under a heated blanket plugged into the shed and they arrived in full thermal walking gear, so we managed to have a brew and a catch-up although it wasn’t what I’d call ideal.  It was just so nice to see different people, though, and to get some different crack.

The weather this week has been cold, dark and wet but today the sun is supposed to shine, so I am palming my dog off on my folks and taking my camera down to the river for an hour.  I need some ‘me’ time, during which I turn off my phone and distract myself from everything.  I’m not sure how long I’ll be able to sit with my current hip pain, and will have to use my tripod as I currently can hardly hold my camera as my arm is so painful, but I’ll still enjoy the peace and quiet and watching the Sandmartins overhead and the ducks as they waddle past will feed my soul.  Stay safe and enjoy your day x

 

 

MCAS Update

Anyone who has been following my blog for a while knows that my mast cells hate stress.  My number 1 mast cell degranulator is drugs.  My number 2 is high histamine foods.  But my number 3 has always been stress of any kind.

When I’m under acute stress I flush, get pins and needles, severe brain fog, can have what feels like a seizure, oesophageal spasms which make me retch and retch, severe nausea, painful bowel cramps and just feel really unwell.

When I’m under chronic stress I break out in hives, itch all over, stop sleeping (histamine is wake promoting), stop pooping, start peeing like a racehorse particularly during the night, my pain levels significantly increase due to muscle spasms particularly in my back and I feel generally exhausted and run down.

Virtually the entire world has been under stress during the pandemic.  Acute stress in the initial weeks, and chronic stress as the months have worn on.   In the initial few weeks I was also dealing with my acutely unwell Dad and the bed bugs in my house, not to mention staying up til midnight each week to try and get a grocery delivery slot on which 5 vulnerable people were depending for food, and my sister-in-law started her chemotherapy about which we were all concerned.  It was a LOT to be dealing with, when I am unwell myself and on my own with zero support.

3 ½ months down the line I’m still doing shopping for 5 people, am having to solely look after my parents while having no help in my own home, eg. my cleaner, and am helping my very disabled friend with all sorts of issues.

By now, I fully expected to not be sleeping, be covered in itchy hives, be peeing for England, to not be able to poop and to be utterly exhausted.  And I am utterly, utterly, exhausted, but few of the other symptoms have materialized.  In particular, I have not had a single hive this entire time and am sleeping like a baby 😯.  It’s nothing short of miraculous.  My pain levels, however, are much worse and I have had a very sore throat and swollen glands for the past few weeks but these are symptoms I associate with M.E. and hEDS, rather than MCAS – I don’t get flu symptoms as part of my mast cell disease and the pain is very different to the pain from hEDS.  In fact, my hEDS is particularly bad at the mo, but that’s a post for another day!

Looking back, I’ve had mast cell disease since the day I was born but it didn’t explode and become a life-threatening issue until I was 44 – right around the time I began peri-menopause and my hormones started roller-coasting.  I am now transitioning into Menopause and am wondering if my now almost total lack of hormones is helping to stabilize my MCAS?  I can think of no other explanation as to why my mast cells aren’t having a total hissy fit to the massive stress I’ve been under during the lockdown.

Having said all that, there is one symptom which has been much, much worse lately and that is my migraines.  I am being tortured on an almost daily basis.  However, 6 weeks ago I changed the pillow on my bed so am wondering if my new pillow isn’t supporting my neck while I sleep.  I might look into ditching it and getting a proper foam support one instead.  Watch this space for the results of that.

I know that I will never be free from MCAS as I’ve had symptoms since I was a baby.  However, if it reduces to the point of just being an occasional or mild problem as it was when I was a child and young adult I’ll be a very happy bunny and it would be an interesting topic for researchers to look into.

Weekly roundup

Tuesday I made my annual trip to a nature reserve on the hunt for Dragonflies.  We are allowed to travel now for a day out, the weather was a perfect 24C with a slight breeze, and I met my bestie there after not seeing her for three whole months!  We each took a picnic and had a good old catch up before I got my camera out to try and capture the beautiful, but elusive, little critters.  I took loads of pictures of mating Damselflies which haven’t turned out well as they were too far away, but I did finally manage to get a shot of a Dragonfly in flight after 4 years of trying 😀.  I had an absolutely lovely day, which was sorely needed.

Four Spotted Chaser in flight

Four Spotted Chaser in flight

The rest of the week was spent preparing for my Mum’s 80th birthday.  She’s been so ill for so long it simply amazes me that she’s made it to the big eight 0 and I know I’m lucky to still have my Mum at my age.  As no-one is allowed in the house I’d planned to have just the family visit for celebrations in the garden, but after weeks of glorious weather the temperature suddenly plummeted to 11C, with strong winds and prolonged spells of rain.  Fucking typical.  So on Tuesday I went on Ebay and ordered a large Gazebo with sides which my brother erected in the garden.  I decorated it with bunting, balloons and candles and fed in an electric cable which meant I could plug in a halogen heater and an electric blanket to put over my parents – the very last thing I wanted was for them to be cold and uncomfortable.   I then had just a couple of people at a time visit her in the Gazebo, wiping the chair arms down with disinfectant before the next visitors arrived, which actually turned out fine.

We couldn’t have food as it would have involved everyone touching stuff, so made do with birthday cake on disposable plates and prosecco in disposable cups, distributed by me wearing disposable gloves!  All went well until 3.30pm when the wind really started to get gusty and the gazebo was in danger of taking off into outer space, so I had to call it a day and get the thing taken down quick smart.  To be honest, the whole event was absolutely and utterly exhausting for me and I’m still suffering the consequences days later, but Mum had a nice time and that’s the main thing.

My throat continues to be really sore and the glands in my neck haven’t gone down, so now that’s over and done with I really need to be resting, as my immune system is obviously not happy.   During the pandemic I’ve looked after everyone else and not had any energy left to look after myself and it’s taken a huge toll on my health.  Now lockdown is being relaxed I’m having to re-think what my new ‘normal’ will look like, as I can’t keep this level of activity up.   It’s really tricky, though, as my Mum will continue to be shielded until a vaccine is found so it’s not like I can just pay for help in her home or get help myself in mine 😕.   Something has to give, though, as I’m on my last legs.

My sister in law has her last chemotherapy today and she must be terrified because she’s had a really bad reaction to the last two treatments.  However, she can shortly switch to radiotherapy which takes place every day for 3 weeks.  At least it’s at the local hospital which is only a 40 mile round trip, rather than the big hospital which is a 140 mile round trip – you have to be thankful for small mercies.

Well, my stomach is rumbling so it must be time for breakfast.  Stay safe my friends and I’ll catch up with you next week x

Covid-19: lockdown relaxation

Money creation is being put before lives.  There is no doubt about it here in the UK.  I understand that we can’t take care of our citizens if we go bankrupt so it’s a stupendously difficult decision for our Government, but the facts are still the facts.  People are literally being sacrificed to save our economy.

Many countries are now starting to relax Lockdown and the UK have followed suit, but it’s completely the wrong course of action here because we are in a totally different position to most other countries.  In Germany, one of the world leaders in their response to Covid-19 and with 20 million more residents than Britain, there are under 400 daily confirmed cases of the virus.  In Italy, one of the worst affected countries in the world and with an identical population size to Britain, daily confirmed cases of the virus are under 200.   In stark contrast, the UK confirmed daily cases stand at around 2,000 and in reality there are an estimated 8,000-9,500 cases of daily new infections (sources: Office of National Statistics & the Zoe/King’s College Covid-19 tracker app).  To even begin to think about ending lockdown here in Britain is insanity.

The main difference in the countries who have succeeded most in restricting the spread of Covid-19, such as South Korea, appears to be in the rigorous testing, tracking, tracing and isolating of infected individuals.  This is of utmost importance now that lockdowns are relaxing so that outbreaks and hotspots can quickly be identified and quashed.  The British government announced that a “world beating” TTTI  system would be in place by 1st June which is when lockdown restrictions began to be relaxed here in the UK, yet it is nowhere in sight and it was leaked this week that it may not be ready until September or even October!  By which time thousands of more people will have died and the virus will be endemic in our society.  Which is fine if you are young and unlikely to suffer badly from being infected and catastrophic if you are elderly or have an underlying health condition.

We still, still!, aren’t testing anyone flying into the UK from abroad.  We knew about the pandemic in China as far back as January, and the catastrophe unfolding in Italy at the start of March, yet did nothing to secure our borders against infection.  As I type that I’m shaking my head in disbelief, not least because nothing has changed.  We are going to ask people entering the UK with symptoms to self-isolate, but not actually test them, track them or enforce quarantine.  Without question, we should be banning anyone from the USA from coming here due to the country’s out of control infection rate (over 25,000 confirmed new infections per day, though that number is likely to be ¼ of the true figure source: Our World in Data) but that might upset Trump so we won’t.  We’ll let more British people die instead.

Having let people back out on the streets, most other countries are insisting on face masks being worn to mitigate the spread of infection.  Except the UK.  We’ve been told for the entire duration of the pandemic that face-masks don’t stop you catching the infection so are pointless (no mention of the fact they reduce the spread of infection), when the reality was that we simply didn’t have enough face-masks and priority was given to NHS staff.  This, of course, excluded residential and home care workers, who have gone down with Covid-19 in their hundreds, and those working with the public such as shop and transport workers, hundreds of whom have now also died.  It’s a national scandal.  Independent scientific evidence shows: “The use of face masks was protective for both health-care workers and people in the community exposed to infection, with both the frequentist and Bayesian analyses lending support to face mask use irrespective of setting.”  (source: systematic review of 172 studies on Covid-19, MERS and SARS by the Lancet, 1st June 2020).  In a U-turn, the British government are now making the wearing of face-masks by everyone using public transport mandatory……………..but not until 15th June, when lockdown ended on 1st June.  Why are they letting the public infect each other in close proximity on trains and buses for over 2 weeks?!  It’s reckless at best and insanity at worst and I simply don’t understand their logic.

My sister-in-law is a teaching aid in a primary school.  Certain age groups of children were encouraged to start back at school on Monday this week (1st June).  By Friday my s-i-l had caught a stonking cold, despite strict social distancing measures in the school and rigorous hygiene precautions.  Which shows just how easily regular viruses spread, let alone a virus as highly infectious as Covid-19.

When the easing of lockdown was announced by the Government 10 days ago, they also said that the R number (ie the number of people that one infected person will pass the virus on to, on average) must be kept below 1 and if it went beyond that strict lockdown would be re-introduced.  Yet here in the north west of England, the R number this week went up to 1.2 and it has not even been mentioned!  Instead, the Government are amalgamating figures from all over the UK which brings the R number to around 0.9 (still perilously high but below the magic 1).  However, these figures are not a true picture of the regional variations in infection rates.  The south-west (Cornwall, Devon) for example has always had relatively few cases, currently 778 infections a day, but the north-west and Cumbria in particular which is where I live has had the highest number of cases in the country after London and still has 4,170 infections a day.  When you bare in mind that Cumbria is the largest county in terms of landmass in England yet is the 2nd most sparsely populated, infection spread here should have been amongst the lowest.   Ending lockdown here and allowing an influx of tourists to the Lake District from all over the UK is absolutely and utterly bonkers and will cause preventable deaths.

It appears that if you’re chronically ill, old or northern the Government doesn’t really mind you dying – you are collateral damage in a war to save the economy.

 

Who Cares?

I’m utterly exhausted today, can’t get out of bed and am feeling quite unwell.

Mondays are currently hard for me, as I go through to help my parents.  Prior to the pandemic, they paid for help in the house but as the people who were helping them are all mixing with society (children, supermarkets, health centres etc.) we think it’s too risky for them to come to my parents home, so I’m filling the gap.  It’s too much for me, but I can currently see no other option which doesn’t put them at risk.

In addition, I’m grocery shopping for 4 households each week: my own, my parents, plus two elderly, vulnerable friends.  Delivery slots are still really hard to come by, plus my elderly friends in the next town don’t buy enough each week to qualify for the £40 limit, so I get their groceries in with my Tesco delivery.  I then have to do a 12 mile round trip to deliver the shopping as my one friend is so disabled he can’t carry bags from his car to his kitchen.

It’s my Mum’s 80th birthday this week so I’ve been planning for that, while having no access to shops.  My cousin is making her a cake, but there is a huge shortage of icing sugar for reasons no-one can understand so I’ve spent a fortnight trying to get hold of some.  In full  PPE, I risked going to a specialist supermarket at 10am Monday morning only to find the icing sugar shelf bare.  I asked an assistant, who told me there was actually a delivery in the back storeroom but she wasn’t allowed to give me any.  However, she would be stocking the shelf at 4pm and if I came back she would make sure I got a bag.  Which meant another 14 mile round trip.  I then had to deliver it to my cousin.

In amongst all this, I’ve been dealing with the legal case against my neighbour who is blocking my driveway.  I was on the phone to the solicitor for 30 minutes this morning discussing boundaries.  It’s super stressful.

Yesterday, I met up with my bestie for a picnic lunch.  We haven’t seen each other for 3 months and I had a truly lovely day.  I needed it.  But it was still really tiring.

Tonight I have a camera club zoom meeting.  I missed last week’s as I wasn’t well enough to participate, so I really want to try to make this week’s.

Then there’s still my dog to take out.  And bills to pay.  And my car to look after.  And cooking.  And washing.  And showering.  And all the other things we all have to do each day just to survive.

I was having a conversation with my disabled friend this morning, who has rung me every single day of the pandemic because he’s isolated, bored and lonely, and he was telling me off for the millionth time for doing too much.  I kind’ve lost my cool with him.
“Which part of my day, today, then do you think I shouldn’t do?!”  I shout, exasperated.  “Your Tesco shopping, my Tesco shopping, our friends’ Tesco shopping, my parents Tesco shopping, wrapping some of my Mum’s birthday gifts, taking the dog out, my lunch, my Camera club meeting, the conversation with my solicitor or my current conversation with you?”
We agree that the only non-essential part of my day was the conversation I was having with him, but he seemed very reluctant for some reason to give that up!!

Everyone tells me I do too much.  But what is the alternative?

To give up my photography, which is the only thing that keeps me sane.

To not care for my parents?  Who would do that, then, in the midst of a killer pandemic and when the only other person who helps to look after them is having chemotherapy for cancer?  My Dad’s toenails last week had grown so long over the last 2½ months he literally couldn’t get his shoes on.  Do I tell him it’s not my job to cut them and just leave him to it?

Do I ignore my disabled friend?  After all, he’s not my responsibility.  He has 2 sons, although they live miles away.  They do nothing for him though and I can’t make them care or step up to the plate.  Do I let him starve, then?  Be totally isolated with no company or anyone to talk to? Should I not have bought him a tray of bedding plants from B&Q when I was there last week to put in the empty pots on his little patio?  Because he’s elderly, should he not want his home to be nice?

I have no children or any family that particularly care about me.  When I am old and in my friends’ or parents’ position, who will care for me?  I hope someone does, even if that is just ringing me each day for a little chat to break the solitude and isolation, or offering to get me my favourite cake from Tesco.

Whatever happened to compassion, empathy and basic humanity?  Looking after the vulnerable in society isn’t someone else’s job.  It’s our job.  ALL of our jobs.   If anyone thinks that 15 minutes of Home Care from the council each day meets the needs of our elderly they’re living in cloud cuckoo land.  It’s barely enough time to microwave a dinner.  What about shopping?  Washing?  Folding laundry and putting it away?  Cutting nails.  Getting glasses mended, or hearing aid batteries?  Paperwork, legions of it which all needs to be done online – my Mum can barely use her cordless landline phone let alone the internet.  Many local banks and post offices have shut, leaving elderly people no way of banking cheques or sorting out financial problems – my Dad is deaf and can’t hear properly on the phone.  My Mum had burned her arm this week so needed me to dress that for her.  She also wanted my advice on what to do about a sore which had developed on her skin.  My Dad had an ingrowing eyelash which needed to be plucked out, plus the velcro strap on his sandal wasn’t closing properly and he couldn’t work out why.

My parents need help in a thousand different ways, and much of the help has to be from someone they implicitly trust and who knows them intimately.  You can’t buy that, you really can’t.  Everyone tells me I need to get more help for my parents and my friend, but where on earth do they think this level of help would come from?  Who can my parents ring to say their Sky remote isn’t working?  Or the battery is beeping in their smoke alarm?  Or they’ve had a letter from the hospital that they don’t understand?  Or they’ve finished their jigsaw and can they have a new one please?

When we’re young, and in control of our lives and our bodies we are so arrogant.  We think it will always be this way and our brains will always function as they do now.  But trust me when I say, they won’t.  One day it’s more than likely we will be slow, unsure, easily confused, frustrated, vulnerable, left behind, frail, unsteady, stiff, muddled and forgetful………and that’s if we age well!

So, yes, I am exhausted and feeling unwell.   But I can sleep at night, knowing I’ve done my best. And if there is such a thing as Karma I hope this care will come back to me when I am old and in need of kindness.