Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

I feel like I’m living in a state of altered consciousness.  Seeing events unfold from outside my body, like I’m watching a disaster movie.  I have no clue what day of the week it is (this was started yesterday, because to me yesterday was Sunday) and don’t even ask me what month we’re in.  It’s hugely disorientating.

Usually a very robust, take-shit-on-the-chin country lass I have had the worst week for my mental health in many a long year.  I have dealt with a cartload of stress in the past 12 months so was already wobbly before the pandemic arrived.  The verbal abuse I was subjected to this week in my lovely, safe community was simply the last straw and I have cried more in the past week than I have in forever.  My raging, menopausal hormones haven’t helped!

After a week with the worst case of diarrhoea I’ve ever come across my Dad has finally stopped pooping, thank God.  However, he’s a super sociable and outgoing person and isn’t coping at all well with confinement, so is really snappy and irritable.  On top of that, my Mum isn’t allowed out to get alcohol and I’m certainly not buying her any (I suspect she’s getting her grand-daughter to get her the odd bottle of plonk from the supermarket), so she’s proper bitchy and critical.  If my parents haven’t killed each other by the end of the 3 month shielded period it will be nothing short of a miracle!

My s-i-l starts her chemotherapy tomorrow, so her daughter has had to move out as she’s in contact with the public through her job as a police officer.  There are some wonderful people out there who have offered free accommodation to front line staff who can’t live at home, so she’s now ensconced for 3 months in a 5 star log cabin on a small holiday complex a few miles out of town.  She even has a hot tub 😉

For 2 nights running I stopped up until midnight to try and book my next Tesco delivery slot and am happy to report that I now have deliveries until the end of April.  Not only am I shopping for myself as a vulnerable person, I’m also shopping for my shielded parents, my 80 year old next door neighbours, my elderly friend in the next town and my elderly, very disabled friend also in the next town, so my one delivery is serving 5 vulnerable folks.  It felt like I’d won the lotto when I was able to secure a slot, though the effort of being woken by my alarm at 11.45pm, having to sit with finger poised for over half an hour until I reached the front of the queue, then of course being so wired I couldn’t get back to sleep for hours left me with a banging migraine for 2 whole days.

I delivered this week’s shopping to my very disabled friend on Thursday morning.  He sat on his walker in the porch with a coffee, and I sat in my car from 6 feet away with my flask and a kitkat.  We were chatting away when he suddenly became tearful and admitted it was the 4th anniversary of his beloved wife’s death.  Being in total isolation he was feeling her loss more than ever and it was awful to not be able to give him a hug 😦  The normal stresses of life aren’t going away just because we are in the middle of a global pandemic.

Lots of people are online saying how bored they are but I’ve been up to my eyeballs as usual.  The cleaning (including having to blitz my parents’ house on more than one occasion due to the diarrhoea situation), washing (ditto) and shopping for 5 households, as well as taking the dog out as usual has filled my time and taken what little energy I possess.  My freezer was becoming depleted, so yesterday I spent hours making smoothies, roasting red peppers for sauce and making low histamine meals to freeze – my back felt like it was going to snap in two by the end and my hands and shoulders are still painful this morning :-/  I haven’t had time to be bored.  This week the dog needs a clip because he’s starting to resemble a Yeti.  He had an appointment at the groomers the day after the lockdown was announced so that had to be cancelled.  It absolutely kills my back to bathe, dry, brush and clip him but the poor fella can’t see out of his monstrous Schnauzer eyebrows and is sitting panting in our lounge in 22C of centrally heated air, so something needs to be done.

Sorry for the downbeat post – I’m afraid if you’re looking for furry kittens, sing alongs and Thai Chi you’ll need to read elsewhere.  If, however, like me you’re currently struggling I hear you!  Love to all x

 

Covid-19: discrimination

My parents are 80 years old.  They were poor as children and both left school at 15 without much of an education.  They are not au fait with technology and struggle just to use their cordless phone – they don’t have a tablet or the internet.

My Mum is severely disabled and my Dad has mobility issues and mild dementia.  They both wear hearing aids so even speaking on the phone can be challenging.

Most of the information regarding the pandemic is being made available online.  From important new laws, to Government recommendations on social distancing, to whether or not their recycling is being collected as usual.  They have access to NONE of it.

Each day, the British Government do a televised daily briefing.  The Scottish briefing is signed for the deaf.  The English briefing is not.  Apparently, deaf people don’t need to know what’s happening.

There are NO home delivery slots available for groceries for the next 3 weeks (shame on you if you have booked a slot but are under 70 and healthy), forcing the very old, the disabled and the chronically sick onto the street for food.  I don’t know if you’ve ever gone round a supermarket on a mobility scooter or in a wheelchair, but 80% of the items on the shelves are inaccessible.  You can only reach the food on the shelves at eye level, so often have to ask others to pass you stuff.  But of course, we are social distancing and this can currently not happen.  How, then, are these vulnerable people supposed to shop?  Or get through a checkout when the operator is behind a screen?  (which obviously they have to be, I’m just pointing out the situation from a disabled person’s perspective).

I’ve lived for nearly 20 years in a tiny hamlet in the Lake District.  I’ve spent the week dealing with a very poorly 80 year old parent, so forgot to put my mobility scooter on charge.  I need to be strict with social distancing, as I am caring for very ill parents, so am taking my daily exercise on the edge of my village (I can only walk short distances on the flat).  Normally I’d go out on my mobility scooter, but as the battery was dead I drove ¼ mile to the edge of the village in order to get fresh air and walk my little dog (the only companion I have as I live alone).  I was hollered at by a neighbour for making an unnecessary journey.

My genetic disease, and brain injury, aren’t going to suddenly disappear because there is a pandemic.  I may not be able to live exactly by the rules all of the time because I am not healthy or fit.  Does that mean I should be verbally attacked in the street?

We are only 10 days into lockdown and already neighbours are becoming vigilantes.  It reminds me of the Jews in the war who were turned on by their communities and dobbed in by neighbours they’d known all their lives.

It’s already becoming dog eat dog.

Some people think they’re being good neighbours by offering to shop and help the vulnerable in their communities.  And while this is admirable, these people didn’t get sick or old or disabled last week.  They have struggled and lived in isolation for years, while you have busily gone about your life and ignored them.  And when the pandemic is over, you will ignore them again.

We are not a “community”.  We are the sick and the healthy.  The young and the old.  The able-bodied and the non-able-bodied.  We live totally separate lives and none more so than now.

 

 

Weekly roundup

Gosh, where to begin my weekly report?  I’ve been self isolating as much as possible, to protect not only my own health but so that I am still able to visit my parents.  I’m lucky in that I live in a tiny hamlet in the wilds of nowhere, so social distancing isn’t a problem.  Also that I already live in isolation for the most part, so my life is set up for that with internet shopping for just about everything.  I currently don’t have a cleaner so no-one is entering my home, and my dog walker is still coming but I am leaving the lead and poop bags on the doorstep and we are chatting to each other from 6 feet away.  I am still able to take Bertie out myself on my scooter in the afternoons and if we see other people we just cross the road and shout 😉

My sister-in-law has waited 3 weeks for her Oncotype DX test to come back from America and sadly it has shown that her breast cancer has a chance of recurrence, so she is having to have chemotherapy as well as radiotherapy.  She’s now in a huge dilemma because her husband delivers for a drug company so is classed as a key worker and her daughter, who still lives at home, is a police officer.  Both must keep working but of course come into contact with the public so are at risk of infection, which might kill my s-i-l.  She is now considering going to live with her elderly parents for the duration of her treatment, but even that is risky as she has to go to hospital with the risk of bringing the virus home to her parents 😦  The stress and worry they are going through as a family is enormous, but despite that both my niece and my brother reached out to me this week to ask if I needed anything

It is Mothering Sunday today and I would usually take my parents out for lunch.  Of course, we can’t do that this year so I am putting up a picnic and we are going for a drive up the lakes instead.  Our Prime Minister says we shouldn’t be visiting our Mums at all, but as I have been practising isolation for over 2 weeks now I should be OK.

I heard on the grapevine that someone I know is dying of the virus.  He is in his 70s but previously fit and well, which is terrifying.  I don’t know if this is true or not, but it rammed home that this virus will kill people we know.  He lives with his partner who has Parkinsons disease, so it is now a waiting game to see if she develops symptoms.    Another family friend developed a cough so has to be in lockdown for 2 weeks with her husband.  It thankfully turned out to just be a cold but they lived in icy fear for days and do still need to do the 2 week isolation thingy.

On Friday I felt so stressed with my house situation that I needed to get out, so dropped Bert off with my parents and went to photograph red squirrels in the wood for a couple of hours in an area where it was unlikely I would see anyone.  My back and hips are currently torturing me, so sitting still was a challenge, but I still enjoyed being out in nature and taking my mind off everything for a bit.  Distraction is going to be hugely important in the coming weeks.

The only bright spot on an otherwise dark horizon is that the weather has suddenly turned 🙂  After 4 months of almost continual, unprecedented rain here in the north of England the sun has come out and, although it’s bitingly cold, it’s wonderful for it to just be dry!  The birds have no clue there is a global pandemic going on and are busily making nests and finding partners.  It’s wonderful to watch them and I’m currently being woken at 6am by an hour-long serenade from a beautiful Song Thrush.  Bliss.

Take good care of yourselves and stay safe x

Weekly roundup

Why on God’s green earth are people panic buying toilet roll?  You don’t sneeze out of your arse and if you have to self isolate for 2 weeks how much bog roll would you actually need?  I’m lucky if I use 1 roll a week.  I’m continually amazed by the sheer lunacy of the human race – the greed and selfishness being displayed by so many doesn’t surprise me at all I’m sad to say :-/

I had a little bit of good news for a change this week.  My insurance company has agreed to fund my legal action against my shit-for-brains neighbour, though as yet won’t agree to an injunction as we need to try mediation first.  Even if said neighbour agrees to mediation, which I doubt as it means he’ll have to pay half the fee, I can’t see it working.  I haven’t persuaded him in the last 4 years that just because he wants to use my drive as a car park doesn’t mean he legally can and he completely ignored the recent letter sent by my solicitor, so I don’t think reason is high on his list of personality traits.  However, if he ignores the mediation request or attends but won’t agree to stop his behaviour, it only serves to help my case if it does go to court.

I discovered this week I was one of 600,000 Tesco customers whose clubcard accounts had attempted to be hacked, using a list of emails and passwords previously stolen from christ knows where.  I had no idea my email and password were on a stolen list and discovered they had probably been nicked in 2017, along with 711 million other people’s details.  I don’t use the same password for everything but I do use the same password for multiple sites, so have been busy this week changing them all.  Firefox will now randomly generate a password for you, so I’ve been using that and writing it down (yes, I know you shouldn’t write passwords down but as I use over 100 sites how else do I remember them especially if they are random and have no meaning to me?!).  If you want to check whether your email addresses or passwords have ever been stolen/hacked you can check them on the Have I Been Pwned website (thanks to my bestie for telling me about this site!).

Right, time to get up and at it.  At least it’s not teeming down this morning for our walk – it’s such a palaver getting all my wet weather gear on, then on my scooter and covering both it and me with a huge plastic cape.  It’s rained every day for the better part of 4 months here in the north of England and it’s getting everyone down.  Just you watch, the sun will finally come out and we’ll all be confined to our houses due to bloody Coronavirus!

 

 

 

Coronavirus

I have conflicting emotions surrounding the outbreak of Coronavirus.  On the one hand, I totally understand the seriousness of a novel virus with rapid transmission which can kill people with pre-existing health conditions, and on the other hand I want to scream that isolation, infection risk and vulnerability are situations already encountered by chronically ill people the world over and few have given a shit for a very, very long time.

I was bedridden with M.E. for a decade.  I lived alone and lay in my bed, seeing and speaking to no-one, for 23 hours and 50 minutes of every single day.  There was no internet, Skype, mobile phones or Whats App in those days and I could only speak for a few minutes on the phone before being totally wiped out.  Not that anyone rang me, as my boyfriend and friends all fucked off.  The only people I ever saw were my parents, who both worked full time and popped in with my dinner each night, and my cleaner who I paid to visit for 3 hours each Wednesday (if I hadn’t paid her she wouldn’t have been there).  I maybe saw my GP twice a year if I begged her to call round, but other than that I lived in complete isolation.  Did anyone give a flying fuck?  That would be a big, fat no.

I dreaded going out for any reason.  Not only did it make me feel so ill I prayed to die to escape the torture, but I also risked picking up any number of community infections – anything from norovirus to the common cold.  And, of course, because my immune system was all to pot, if a virus came within 30 feet of me you could guarantee I would succumb to it.  Healthy people suffer for a few days and then are back to normal, but if you have a compromised immune system all hell can break loose and it can have very serious consequences.  I wish more people realized this.  I went to my Camera club on Wednesday night and a woman sat next to me who was absolutely stinking with cold.  She hacked, coughed and sneezed the entire time while I did my best not to breathe in her germs.  Why the HELL was she there, spreading her infection to all in sundry?!  Well, she didn’t have Coronavirus so apparently it’s fine to infect everyone with her lergie!  Jaysus.

If I get her cold it means I then can’t visit my parents, despite the fact I am their main carer.  My Mum, who has severe heart & lung disease, caught a cold mid December and has spent the last 3 months struggling to breathe.  Last week she was on her 4th lot of antibiotics and her 4th lot of steroids, despite also using a daily steroid inhaler for her COPD.  She looks dreadful and has lost loads of weight because the antibiotics make her feel sick to the pit of her stomach and give her the runs.  Healthy people are incredibly selfish to go out into the community when they are obviously infectious and have no thought to the risk they pose to others less fortunate than themselves.  All the advice over Coronavirus isn’t getting this message home if the situation with the woman at my camera club is anything to go by.

As a kid, I contracted Chicken Pox despite having been immunized.  I was also the only girl in a 1300 pupil school to contract Scarlet Fever, and in my teens I also contracted Glandular Fever (Epstein Barr).  I initially developed M.E. following a tummy bug I caught while working on a luxury cruise liner.  I then developed severe M.E. after contracting viral meningitis while in a 5 star holiday resort in Kenya.  My Mum had a heart attack in 2016 and on my first visit to her in hospital I contracted Norovirus.  My immune system clearly doesn’t work as well as other people’s and doesn’t respond as it should when it comes into contact with viruses.  Yet I look completely healthy!

Community born infections kill vulnerable people all the time yet it doesn’t make the headlines.  28,330 died of the flu in 2014/15 in the UK alone, let alone the figures from the rest of the world.  Coronavirus doesn’t seem to affect children much, even if they get it, nor healthy young adults.  You are more vulnerable to serious complications the older you are, or if you have pre-existing health issues, but that applies to any community born infection.

I’m not saying that Coronavirus isn’t serious, simply that any community born infection can be fatal for the vulnerable – it’s nothing new.  And if you have to self isolate for a week or two quit whining and spare a thought for those people who have been isolated by chronic illness for years and who receive none of the attention being given to those affected by the current situation.   STAY AT HOME if you are infectious with anything.

 

Weekly roundup

I have had a truly horrible week and have been so affected by events that, just this once, I can’t even talk about it.  Coming on top of the months of work and emotions involved in the-house-move-that-never-was, and my continuing menopause transition, I have really struggled to cope and am now utterly physically, mentally and emotionally drained and very MEish.  I haven’t been so much kicked while I was down as robbed and beaten 😢.

And then last night something altogether fucking weird happened.  I haven’t been sleeping well and was finally in a much needed deep slumber when something woke me.  I fumbled for the light and tried to bring the clock into focus – 1am.  What on earth?!  There was a very loud sound coming from somewhere in the bedroom.  It’s hard to describe but the nearest I can get is it was a bit like the whir you get from a cookerhood extractor fan.

It seemed to be coming from the corner of the room where Bertie sleeps in his bed.  He has a heat pad on as it’s winter, so my immediate thought was that must have become faulty.  So I go over and pull out the plug…………but the noise continued.

Next to Bert’s bed is a radiator, so my next thought is there must be a leak and the noise is water escaping under pressure.  I check both up-pipes but all is well.  I lay on the floor with my ear to the floorboards, but although the noise is really loud I can’t seem to pinpoint anything.  The thought of having to take up floorboards in the middle of the night is about as appealing as a bikini wax.

My bedroom is above the kitchen, so I go downstairs to check if something is amiss in there.  Total quiet.  Curiouser and curiouser.

I go back upstairs and the sound is definitely coming from Bertie’s corner of the bedroom.  The only other thing over there is my large dressing table.  I touch it and it’s vibrating 😲.  So I open each drawer in turn and finally in the bottom drawer I find the culprit of the noise and it is this:

IMG_20200308_070236

It’s a little gadget to remove fluff from clothes, which I haven’t used in probably 15 years.  Somehow it had turned itself on in the middle of the night, despite the fact the button is quite stiff and fairly hard to push and the battery hasn’t been charged in well over a decade.  What-the-ACTUAL-fuck?!!

I’ve said before that this house is haunted by a poltergeist and this just seals the deal.  Which freaks me out more than a little bit if I’m absolutely honest.

I said to my bestie the other day that things happen to me that absolutely do not happen to other people and she couldn’t help but agree.  For example, I was the only pupil in a 2,000 pupil school to contract Scarlet Fever, and the only person on my trip to Kenya who contracted meningitis.  If there is bad luck about it loves to settle on me and I have no idea what I’ve done to deserve any of it.  My entire life seems to have been challenging and I am perilously close to simply rolling over and admitting defeat.

The only nice thing on an otherwise dark horizon this week was being invited out for coffee by a lovely couple from my former camera club.  But even that went belly up.  We were chatting away when the wife rolled her eyes and said “don’t look now but x has just arrived!”.  X turned out to be one of the women who bullied me out of the club and who lives 10 miles away in another town.   The odds that she would be in the cafe I was in at 10.30am on a Saturday morning I would guestimate at a million to 1 – again with the what-the-ACTUAL-fuck?!

Surely, after 50 years of shite, I’m due some good luck and something not only nice but truly wonderful to happen.  Hurry it along Universe because there’s only so much crap one person can take.

It’s all just pea soup

I’ve just spent a whole hour bawling my eyes out.  Proper ugly crying, with snot streaming down my nose and blochy red cheeks (I’ve probably got stress induced hives too, but can’t be arsed to look).  It was over ‘help’ I didn’t receive on a help forum, so absolutely wasn’t worth crying over but I couldn’t help myself (excuse the pun).  I’m having some issues with my email and the computer nerds on the forum are telling me to do x, y and z but I’m not doing it quickly enough, or well enough, so then they’re getting curt, blunt and downright rude.  So I’m forced to say on a public forum that I have a brain injury and find myself apologising for being sick.  I shouldn’t have to explain my private life to the fucking world to simply be treated with patience and kindness.

This afternoon I had an hour long appointment with my Financial Advisor about my pension.  I now have to make very important decisions about my financial future when every second of the day I feel like I’ve been drugged and beaten half-unconscious.

WordPress, who own this here blog, have changed their Editor recently.  The new one is fucking crap and so confusing it has me tearing what little hair I have left out.  In particular it doesn’t have a spell checker anymore and, being dyslexic and with a brain injury, this has caused me no end of problems.  In fact, I’m gong to write the netx sentence acatly as I spell ti so you can sll the problem.  I rest my case.

I’m making light of the situation, but actually it’s overwhelming.  I struggle to learn anything new, so people either laugh at me and treat me like a numpty (I am, in fact, highly intelligent and articulate brain injury aside), or get frustrated with me for not grasping things, or are just downright fucking judgemental, rude and/or dismissive.

I wish they could live just one day in my shoes, every single second of which is difficult.  And painful. And utterly, utterly exhausting.   I don’t eat properly.  I don’t bathe regularly.  My clothes have holes in cos I don’t have the energy to mend them or the money to buy new ones.   I am beyond lonely.   I barely have the resources to cope when things go right let alone when they go wrong (and they go wrong a LOT on account of the fact I have a brain injury and make shit loads of mistakes).  And on top of all that I look after 2 confused, very elderly, disabled and sick parents, one whom is an alcoholic who affects my already precarious mental health.  I have no physical help, little emotional support and zero health care.

I have over 500 emails in my inbox that I need to do something with.  I still haven’t finished unpacking from the dream-house-that-never-was.  I’m behind on the washing and am almost out of clean undies.  I’m still trying to sort my kitchen out but can’t make a simple decision over which fucking sink to buy.  My outside light stopped working in the storms, so I need to get an electrician out to replace it under warranty (can’t even think about that atm).  The dogs toe-nails are over-due for a clip but I find it stressful to do as he hates it so I keep putting it off.  The silicone round the bath needs replacing.  I have 2 new chairs in a box in my lounge that came with the new breakfast bar but aren’t high enough – I have no clue what to do with them.  I need to advertise my old Dyson hoover cos it still works but I no longer need it.  I missed the deadline for the latest camera club competition.  I’m still battling the rat invasion in the back garden.  I’m waiting to hear if my insurers will cover the cost of an injunction against my shit-for-brains neighbour who blocked my drive on 5 separate occasions today.  I could go on but my head is starting to pound.

After nearly 3 decades of this disabled life I found myself, for the millionth time, explaining to someone yesterday why I need to go to bed at 3.30pm every day and why I can’t just sit on the couch like a normal person.  I wanted to scream it was NONE OF THEIR GODDAMN BUSINESS but of course I didn’t because it doesn’t help the situation and they’d just think I was rude.  I also had to deal with a neighbour who looked at me in amazement as I walked up to the post box with my dog and had to field his question as to whether I’d made some kind of miraculous recovery because I was walking and not on my scooter (the implication being, of course, that I’ve been lying all this time about my health).  Again, I wanted to scream it was NONE OF HIS GODDAMN BUSINESS because actually it fucking isn’t, but instead I smiled and explained I have good days and bad days and do try to walk as much as I’m physically able, all the while wanting to slap his ugly, judgemental face.

I genuinely don’t know how much longer I can live without completely losing my shit.  If I end up being arrested for assault, or am admitted as a dribbling wreck to the psych ward, please send me low histamine food parcels and plenty of sweets (I’m not fussy, but am quite partial to a Haribo gummy bear or 10.  Or even 20.).

Rant over.  It’s now exactly 9pm and I haven’t eaten for 8 hours.  It’s too late for a meal of any kind, so I guess it’s a brew and a banana.  Again.  I’ll turn fucking yellow at this rate.