Category Archives: Ehlers-Danlos Syndrome

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.

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

 

 

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

Weekly roundup

The weather has been gorgeous this week and the UK has now officially had the sunniest spring on record.  Thank God.  Can you imagine 2 months of lockdown if it had piddled down the whole time and we couldn’t even sit the in garden?!

My big news of the week…………..fanfare please……………..is that my shit-for-brains neighbour has finally consulted a solicitor and been told that no, neither he, his customers or delivery vehicles have the right to park/offload in my drive and block my garage so I can’t get in or out.  It’s taken 4½ years to get to this point, even though I’ve been telling him the entire time that his easement gives him the right to “pass and repass” over my drive, not fucking park as it blocks me in!

Has he apologised for putting me through 4 years of stress, including reducing me to tears, and for the money I’ve had to spend taking legal action against him?  That would be a big fat no.  Instead, he sent a really nasty letter to my solicitor accusing me of all sorts.  Apparently I am intimidating, have logs delivered and tipped in the driveway, have oil & coal deliveries which block his access, have food deliveries which block his access, and tell my dog to bark at his customers.  Really?  For a start I don’t have the energy to be intimidating.  For seconds I’m on mains gas and don’t have a log burner, oil central heating or a coal fire (but my neighbour does who also has an easement over my drive).  For thirds I have a Tesco delivery once a week who park on the main road outside my front gate as my kitchen is right next to the front door (but no.3 is a holiday cottage and they have food delivered).  And forthly the entire village can testify that I tell Bertie to “shut up!” 100 times a day because he’s a Mini Schnauzer and they love the sound of their own voice – I have never needed to tell him to bark because he does it all day, every day (this morning his first woof was at 5.20am to tell me he was bored and wanted to get up).  Other than rip out his vocal chords, which I have threatened to do on occasion, I’m not sure how I can get him to shut up and people visiting my property are just going to have to get over it.  My solicitor has had to write back correcting his accusations and asking what exactly he’s going to do to stop his customers and delivery men blocking my fucking drive!!

Monday I made my first forage to a superstore in 2½months.  I really haven’t been shopping since before lockdown and it was totally bizarre to have to queue outside to gain entry (good job the weather’s been nice!), wipe down my trolley handle, only go one way round the store down narrow aisles while trying to stay 2m away from everyone, and queue for 20 minutes to get to a checkout.  I wore my heavy duty DIY mask which is blue and makes me look like a Smurf, plus disposable gloves which were removed before I got back in the car so I didn’t transfer germs to my keys, door handles, steering wheel etc.  There is a lot to think about and my poorly brain struggled to remember all the rules and choose stuff to buy :-/  I’ve never much liked shopping and I like it even less now, though I was still pleased to have finally got hold of some suitably pongy manure with which to mulch my borders!

My GERD is really bad atm, and I’m coughing my head off.  Can you imagine if I’d had a coughing fit in the middle of B&Q?  Part of me wanted to, just to see what would happen 😁.

I had a really bad dizziness episode out of the blue Monday afternoon.  I was at my parents house minding my own business, when the world lurched to the side and I felt like I’d necked an entire bottle of vodka.  Driving home was not for the faint hearted and I felt rubbish for the rest of the day.

Wednesday I had a sodding awful migraine and had to go back to bed after lunch as I couldn’t function due to the pain.  It didn’t ease and I had to miss my zoom Camera Club meeting that night 😥.  I’m still being plagued by migraines and they need to do one.  I’ve absolutely had enough of this menopause malarky and am hoping to do a blog post about where I’m up to sometime this week.

Thursday, I woke with a really sore throat and swollen glands.  Ordinarily I would assume I’d caught a bug, but I know for sure that’s not the case so it’s obviously my M.E. playing up.  It still hasn’t gone and is making me feel crap.

Also on Thursday, my niece was in the village visiting a friend so popped by out of the blue 😊.  At that time, we still couldn’t sit in my garden for a natter so had to chat over the garden wall with her stood in the main road, but it was still brilliant to see someone different and have a change of conversation.

Of course, our-leader-with-the-wild-hair announced on Friday that we can now meet up to 6 people in our gardens so long as we socially distance.  Whooo, hoooooo!  My Mum and Dad came for a drive out and we all sat and had a brew in the sunshine and it was fab-a-lous.

In amongst everything, the deadline for a competition I wanted to enter was looming so I had to crack on and get my images done.  The photos had to be taken in your place of lockdown, ie home, after 15th March.  I’m entering the Lockdown one you’ve already seen, but I also managed to do this one which I’m calling Surviving the Storm.  Don’t ask me how I managed to photograph rain and lightning, because if I told you I’d then have to kill you 😉.  I won’t hold my breath the pictures will do well, but it’s given me something to do.

That’s all my news for this week.  As soon as Bertie comes back from his walk I’m off to visit a nearby nursery to see if I can get some bedding plants – wish me luck and stay safe!

 

 

 

Weekly roundup

My roundup is a little late on account of the fact I’d forgotten it’s Sunday.  Is it just me who has no clue what day, let alone date, it is?!

I’d got half my garden project done when freezing rain arrived, after 2 months of almost continual sunshine.  It was a relief in a way because I was in agony and beyond knackered, so it’s given me a chance to rest and recuperate a bit. I’m really enjoying the achievement of doing a task I’ve thought about for years, but it’s not without cost to my health.  I’ve had a couple of days this week where I simply haven’t been able to get out of bed, and have been so zonked I’ve gone back to sleep after lunch – something I never usually do.  On the plus-side, my continual migraine finally seems to have bogged off for which I am eternally grateful.

I learned that a small number of staff at the Medical Centre in a nearby town have gone down with Covid-19 this week.  How is anyone still getting infected when we’ve all been on lockdown for 2 months and practising social distancing for weeks before that?!  You’re not allowed to visit the Medical Centre if you have any symptoms of Covid, so it’s not like the doctors should have been coming into contact with the virus in the first place, and even if the odd patient was infected but asymptomatic all the medical staff wear full PPE (ie gloves, masks, aprons) and are fastidious about infection control.  Very odd.

My sister-in-law had another really bad reaction to her chemo on Monday, and has been ill ever since.  She usually picks up by about Thursday, but this time she hasn’t yet made it out of bed and nothing is helping the nausea/vomiting 😥.  Thank God her last one is in 3 weeks time, then she can switch to radiotherapy.

We had another Zoom meeting with my Camera Club on Weds evening.  This time we tried a competition, which went remarkably well but didn’t finish til 10.15pm – I was so wired afterwards it was well after midnight before I managed to go to sleep, but it was still a fun night and great to be doing something different.

Thurs I had a lovely long chat with my bestie on the phone.  We haven’t seen each other for over 2 months now and I’m really missing our lunches out and having a good old natter.  Now that lockdown has been relaxed we’re hoping to meet up in a public place sometime in the next week, when the weather has picked up again.

The rest of the time I’ve been trying to stay on top of the washing and cleaning, which has been tough when I’ve felt so exhausted.  I’ve given up on even trying to tackle the paperwork mountain which continues to grow on the hall table and can only pray it doesn’t contain something vital!  I really must get some photos together for a big international competition too, the closing date for which is Friday.  I currently need lightning for a picture I’m working on, so am trying to find ways of faking it – watch this space and pray I don’t electrocute myself or blow the house to smithereens 😉.

 

 

 

I am an Adult

To pass the time in lockdown I’ve embarked on a garden project I’ve wanted done for years.  It’s not easy due to my health, and I can only do a tiny bit at a time, but I know that when it’s finished I’ll feel a massive sense of achievement and pride.

It’s been difficult to source the materials I need due to the pandemic, but I managed to get a delivery last week.  I wasn’t going to be in, so advised them to leave it by the side of the house in the driveway which they did.

When I came home in the afternoon the materials were nowhere to be seen.  I knew they’d been delivered, so knocked on my neighbour’s door to ask if he’d seen them.  “Oh, yes, I moved them to your car port – I was worried they’d be pinched”.  Hmmm.  Like I hadn’t given any thought to the safety of materials I’d spent £100 on, and concluded no-one would take them in broad daylight, in a tiny village, surrounded by neighbours all out in their gardens for the 4 hours I was going to be out of the house?!   I told him it was kind of him, just to keep the peace.

Most of the project I can manage on my own, but I did need another person to hold a piece of wood for me for 5 minutes while I secured the other end so I asked the same neighbour to lend a quick hand.

As we worked he asked me about the project and what I was going to do next, then for reasons I can’t work out he decided I needed his ‘help’.  He proceeded to tell me how to complete the project, like I hadn’t given it months of very careful thought, and despite the fact he’d only thought about it for twenty seconds and his idea actually wouldn’t work.

He then picked up all the tools and materials I was using without a seconds thought, in the middle of a highly infectious pandemic, and started taking over.  This took on added significance when the very next day I was told his daughter was being tested for Covid-19 after developing shortness of breath, and while he doesn’t live with her he’d been to her house 2 days previously because she lives on a farm and needed help.  FFS.

I told him three times “thanks, but I can manage” but he simply ignored me.  I then said “I need to stop now as I’m exhausted” so he said “well, you go inside and I’ll just carry on with this”.  NOOO!!!!  FUCK OFF!  Why aren’t you listening to me?!  So I try one more time “Leave it for now please.  I know it’s going to take me longer than it would take you but that’s OK, I’m not in a rush”.

Now, every time I go anywhere near my garden to start on the project he comes out, unbidden, to ‘help’ and I have to keep reminding him that “I can manage”.  It’s stressing me out.  He constantly tells me how I should be doing things like I’m an inept child and despite the fact that he’s the biggest bodge-it merchant going.  He owned the cottage I live in and the DIY horrors I found in here are legendary, including a live electrical wire shoved behind wallpaper on the chimney breast and damp covered up with kitchen foil, which turned out to be from a leaking underground sewer pipe.

He’s now telling all the neighbours “we” are doing the project and in the process completely robbing me of any sense of achievement.  It was such a big deal to me to do this thing I’ve thought about since I moved here 16 years ago and now he’s making out it’s a joint venture (with him at the helm, obviously).  I want to strangle him.

I told my elderly, disabled friend I was doing the project and he immediately went into parent mode.  “It’s too much”.  “You need to be careful.”  “Don’t overdo it.”  were his first words, and while I appreciate his concern I don’t need anyone to tell me how to take care of my health.  I’ve been doing it for 30 years and know more about managing my condition, and what I can and can’t do, than anyone on the fucking planet.

Next he tells me “I’m worried.  I think I should come and keep an eye on you” even though he is nearly 80, so disabled he can barely walk or stand and so muddled he doesn’t know what day of the week it is.  I’d end up looking after him as usual and getting absolutely nothing done.

I politely declined his offer of ‘help’ but he went on and on and eventually I had to put my foot down.  I said “As a 52 year old grown woman, who’s lived on her own for 30 years, I wonder how I’ve managed to not seriously injure or kill myself when doing jobs around the home? Might it be that I have at least have half a brain cell with which to make decisions about my own safety?!” which was rude I know, but seriously the man wasn’t taking any notice of the polite “thanks but no thanks”.  He did have the good grace to apologize.

Men constantly want to control me.  I try really hard to set boundaries but they simply ignore them and do what they think is best for me.  It drives me insane, not least because I’m the most savvy, practical, self-sufficient person I know (my best mate aside) and have survived a life they can only imagine in their nightmares.

I don’t need to be babied, especially as I’m in my fifties and have very successfully lived on my own since I was 22.  It’s absolutely exhausting to have to keep wrestling back control in my interactions with men and to constantly battle their dominance.   Why do they all insist on treating me like I’m a child? I’m not a wallflower.  I’m confident and clearly not stupid.  I don’t get what this parenting of me is all about, not least because both my parents are still alive and kicking.  I don’t need to be ‘looked after’, having looked after myself for my entire adult life.

I can’t win in my interactions with them either.  If I’m polite they ignore me, if I’m forceful they get offended or tell me I’m a narky bitch!

This has been happening to me my entire life.  Last year I went to the petrol station to buy a ticket for the car wash.  It wasn’t working, so I walked back to the car.  A man followed me, who I didn’t know from Adam, stuck his head through my car window and proceeded to tell me how to wash my vehicle.  “You shouldn’t be using the car wash anyway” he profers “it scratches it.  You should be using the pressure washer with the soft brush.”  Would he have walked up to a strange man at the petrol station, stuck his head through his window and told him how to wash his car?  No he fucking would not!  And I can’t use the sodding pressure washer on account of the fact I’m not well enough – not that I told him that because it was none of his sodding business.

If I need help or advice, which we all occasionally do, I will ASK for it and if I don’t ask it’s because I don’t need or want it.

 

 

 

 

Weekly roundup

We’re at the end of the first week of lockdown relaxation.  No-one I’ve spoken to agrees with Boris’ decision and all think it’s too soon.  Our Government are going on the R number, which is the number of people each infected person passes the virus on to. If it is 2 then 10 infected people would pass it onto 20 others. But if is 0.5 then 10 infected people pass it onto 5 others. A week ago, the R number was estimated to be 0.5-0.7, but it’s now crept up and is estimated to be 1.  If it goes above 1 the virus is spreading rapidly and we will have to go back into lockdown.  I personally can’t see how going above 1 can be avoided, but I’d love to be proved wrong.  The worry is that it will go above 1 but the gvt will fudge the figures, eg. blaming care homes for the rise, and do nothing.  It will be interesting to look back at this post in a month.

The reason for my concern is how some people are suddenly behaving.  I’ll take my Dad as a prime example.  He’s 80 and living with my Mum who is being shielded.  She has severe COPD, half a lung, advanced kidney disease and heart disease.  She can barely cope with catching the common cold and if she got Covid-19 she would die, no ifs, ands or buts.  Despite staying home for the 6 weeks of lockdown, the second the relaxation was announced my Dad went to the local supermarket 3 times in five days.  He doesn’t wear a mask or gloves when out and always forgets to wash his hands on return home.  Because lockdown is no longer in force, his brain seems to think the threat has passed.  I have tried and failed to impress upon both him and my Mum the lethal nature of Covid but it seems to fall on deaf ears.  There will be millions like him around the country.

My next door neighbour is also being shielded and she has been brilliant at staying home and social distancing.  Yesterday, however, we were in the driveway having a chat and for some bizarre reason she walked straight up to within a foot of me!  I had to physically say “stay away!” which I’ve never had to do during lockdown.  Everyone appears to be getting complacent, which I personally think will be our undoing particularly as nearly 400 people PER DAY are still dying from the virus.

Just to put this into context, my Aunt has a friend who lives in a nearby village.  She is over 70 and has been in lockdown for the entire 6 weeks.  Yet last weekend she was hospitalized with Covid-19.  She has NO CLUE how she has been infected and can only surmise it’s been from touching something which has come into the house, eg mail or food.  That’s how scary this virus is.

Changing the subject, Wednesday evening my camera club decided to hold a Zoom meeting.  11 of us tuned in and it was chaotic but fun.  We’ve decided to hold a competition online via Zoom and our website, so it will be interesting to see how that goes.  None of us have any clue what’s going to happen about the season re-starting in September as we meet in a tiny room and half of the members are over 60.

Thursday I took advantage of the relaxation in rules on being able to travel for exercise and drove 5 miles to a local bluebell wood.   My annual trip is one of my favourite days of the whole year and being as though this year I didn’t think it was going to happen it was extra special.  For the first 2½ hours I had the entire place to myself – it was just me, the flowers, the butterflies, the bees, the birds and the trees.  Blissful, though it did give me an opportunity to reflect on just how chronically stressed and wound up I was feeling 😕.  See one of the resulting photos here.

However the payback was brutal and I only got 2 hours sleep that night on account of the pain in my back,  hips and legs from walking.  I have no idea what’s set my issues off the past three months, but my pelvis hasn’t been this bad since 2011 and I don’t know what to do about the situation.  You’re usually advised to rest for a few months during a bad flare, but I’ve been in lockdown so haven’t done a thing and it hasn’t helped in the slightest.  I tidied the garden up yesterday and did a few much-needed jobs around the house, and this morning I can literally barely walk 😥.

Well, that’s not been a very upbeat post has it?!  I wish I had something fun and exciting to tell you but the truth is I haven’t.  Even the weather has been freezing cold and windy with overnight frosts, though it’s set to warm up again this week, in which case I’m hoping to dump the dog on my folks for a few hours and poddle myself off to the riverbank with my camera.  The thing I’ve missed the most during lockdown is being amongst nature which is my stress buster.  If I get any exciting shots I’ll be sure to share them with you.

Continue to stay safe! xoxo