Being a Carer

As most of you know both my parents are nearly 80 – my Mum is physically disabled and an alcoholic and my Dad has learning difficulties and mild dementia.  They both really struggle with the modern world and are clueless when it comes to technology.

When they first got their cordless phone it took them forever to understand that they now had to press the green button to pick up a call and the red button to finish the call – they kept forgetting to press red then nobody could get through.  It also took ages for them to get used to using the phone book and speed dial, but now they love it because they can’t remember anyone’s phone numbers in any event (can any of us?!).

My Dad now also has a mobile phone on which he can make and receive calls although texting is beyond him, however at least he can ring 999 on it if needed and more importantly we can ring him to check he’s OK when he’s out and about.

I live 6 miles from my parents, but there’s currently masses of roadworks and diversions and I have to drive 9 miles to see them making an 18 mile round trip.  As you know, I was out all day yesterday plus have been feeling rubbish all week so today I’m exhausted but I always ring my parents every morning to check they’re OK…………..and this morning the phone rang and rang and rang and not only did no-one pick up the answer phone didn’t kick in.  Summat was up (as we say in the north).  I eventually got through on my Dad’s mobile, though, so at least knew they were both fine but there was clearly an issue with the landline.

So after I took Bertie out this afternoon I drove the 9 miles into town to discover the base wasn’t working on their cordless phone so neither of the handsets could make or receive a call.  I tried everything Google told me to do and eventually concluded the base had become faulty and would have to go back to Amazon (luckily it’s under warranty).  However, this left them without a landline, vital for Mum should Dad be out and have taken his mobile with him.

So I drove the 9 miles home, picked up an old corded landline phone I keep in case of power cuts, and drove the 9 miles back into town with it.  I plugged it in, rang my mobile on it to make sure it was working, showed mum how to use it and drove the 9 miles back home again.  By this time it was 4.30pm and, as I’m usually in bed by then, I was feeling pretty ropey.

I was just about to get into my pjs when my mobile rang – it was my Mum, using my Dad’s mobile to ring me to say that she’d tried to use the corded phone to ring me but it said ‘number not recognized’.  So I patiently, again, went through how to ring out on the corded phone (“don’t press any other buttons than the numbers” I tell her, “there’s no green or red buttons like on the other phone”).  I asked my Mum to try it again and ring me back.  Nothing.  So I rang the mobile back only to get a voice telling me the call could not be made.  So I tried ringing the landline, only of course it was engaged as my Mum was trying to ring me.  *sigh*.

Eventually Mum gave up trying to ring me so I could then ring her. “What’s happening?” I ask.
“The stupid bloody phone still won’t work” she replies testily and now your Dad’s mobile is saying “sim not recognized”.  I have no fucking clue what they’d done but were effectively now without a phone to ring the emergency services if needed.  I told her to put my Dad on the line, asked him to turn his mobile off and back on again, and he said he had but it still said “sim not recognized”.  FFS.  I couldn’t leave them like that all night, so in my slippers I bundle Bertie back in the car and drive the 9 mile back to town.

I tried ringing my mobile from the corded landline phone and it worked a treat.  I also called my home phone and it worked a treat.  “Well it wasn’t working when I did it!” my Mum shouted at me, obviously embarrassed that the phone was clearly fine she had just pressed something she shouldn’t.  So, using every ounce of patience I possess, I went through yet again how to dial out on the phone when what I actually wanted to say was “well if you weren’t bloody drunk all the time you might manage better!”

I then turned my Dad’s mobile off and back on again and it, too, was working perfectly.

I got back in the car and drove the 9 miles home.  I now feel too sick with tiredness to even contemplate eating my dinner and the much needed bath I was going to have has gone out the window as I no longer have the energy.

Things like this happen week in week out, month in month out, year in year out.  Caring for elderly and confused relatives isn’t just about hospital appointments or putting the bins out – it’s about the million and one little things which frazzle your nerves, test your patience and drain you of energy.  And it’s all doubly difficult when you’re ill yourself and have no-one caring for you.

Thank you for listening to my little rant – I have no-one else to tell y’see and it always helps the frustration to put it down on paper.  The shitty part is I know my Mum still can’t use the corded phone and neither could my Dad if needed, so basically it’s all been a great big waste of time and energy.  I’m off to order a replacement cordless phone with next day delivery on Amazon and to arrange to send the faulty one back.

 

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Weekly roundup

Apologies that there has been no post this week – I have felt like road kill due in no small part to  Aunt Flo, who woke me hammering on my uterus at 2am Monday morning.  The Bitch.  I was rudely awoken by stabbing pain, went for a wee and the blood poured out of me like I’d cut a fucking artery.  And here was me thinking my periods would just stop and that would be the end of that – I forget the Gods are always listening and laugh at me whenever I think something in my life will be easy.  On the upside, at least now I know why I was such a jibbering emotional wreck last weekend and that I’m not losing the plot after all 😉

Since developing M.E. 24 years ago I’ve had tinnitus.  Luckily it’s only been mild and, although a little bit irritating, has never interfered with my life in any way…………until now.  For some reason during the past week the volume has suddenly gone way up and I’m now conscious of a hugely annoying high pitched whine every second of the day.  It’s louder than the telly which distracts me from the programme I’m watching and lying peacefully in silence to rest has been out of the question.  Why on God’s green earth has it suddenly gone bonkers?!  Oh well, at least waking each morning wondering what new tortures my body is going to inflict on me means I’m never bored.  Pissed, fed up and sometimes suicidal, but never bored 😉

Thursday I had lunch with my closest friend from Camera Club.  She moves away to the North East next week and I am really going to miss her 😦  I’ve got to be honest, there aren’t that many people in the world I truly like.  I am constantly amazed at how disappointing I find most folk and do find it difficult to meet people who are kind, interesting, easy to talk to and fun to be around.  L is one such person and, with our shared passion for photography, she has hugely enriched my life.  She is genuinely happy when my pictures do well, even though we’re technically competing against each other, and came with me to Scotland recently to support me when I gave my talk.  She also takes my health on board without trying to mother me or tell me what I should, or shouldn’t, be doing like she’s the expert.  I thought about chaining her up in my shed to stop her from going but I think her Husband would eventually notice she was awol and call the cops 😉

During the summer holidays my friend’s two children came round to do some modelling for me.  I use them as my guinea pigs to try out some of my more unusual shots and, as they love dressing up and having their picture taken plus I give them free framed prints for their efforts, it works well for all concerned.  I had an idea for the teenager to dress her in eastern clothes to highlight the issue of child marriage but, having taken the picture, I had no clue how to create the image of a desert I had in mind for the background (which symbolizes the emotional desert these girls find themselves in).  I’ve sat on the shot for several weeks and eventually came up with a plan to re-create the Sahara in my spare bedroom with a small bag of play pen sand.  After much effort and faffing in Photoshop I’m fairly happy with the end result which I’m calling ‘Child Bride’.  My friend said she was uneasy with the picture as it uses a white girl in Eastern dress but not all child marriages take place in Africa and many Middle Eastern and Asian girls are fair skinned.

Friday I felt absolutely and utterly crap – my brain was full of treacle, my legs didn’t belong to me and my entire body felt poisoned.  I sometimes forget how awful M.E. can be as it’s been so long now since I was severely affected.

Saturday was the annual competition between my Camera Club and all the other clubs in my part of England.  One of my pictures had been chosen to represent our Club and I’d been really looking forward to going, not least because the President of the Photographic Society of America had flown over to judge the event.  I woke feeling like some dead animal Bertie had dug up in the garden and ummd and ahhhhd for 3 hours over whether or not I should risk attending the competition which was fifty miles away, but I’d looked forward to it so much I decided “fuck it!” and dragged my clothes on.  In the end I coped OK all things considered and had a really fab day – my photo was awarded 18 points out of 20 so I was happy with that considering the judge was a wildlife fanatic and my photo was a fantasy picture.

I know I have been doing wayyyyy too much in recent months and I simply can’t keep that up without dire consequences to my health.  The thing is, I’m really enjoying life atm and it’s so hard to rein that in and lie in my bed bored to tears resting!  I’m usually very good at pacing having had nearly a quarter of a century of practice but I’m so passionate about my photography that I’m finding it hard to keep a lid on my enthusiasm.  There are times being chronically ill truly sucks!

 

 

 

Weekly roundup

I’m still buzzing after being contacted by the researchers from Hong Kong about their histamine testing app.  Victor, from the technical team, has emailed to say the latest prototype is out at the end of the month and he’ll send me that to try, so fingers crossed.  I was worried that my phone runs on Windows and most apps are for Android and Apple, but he said that should be fine.  I think they have cloud storage where I submit the results, but I’ll wait to hear more about what I have to do when I receive the sensors.  Their press release says the device measures “up to 100ppm” for histamine, but I don’t know if that means 0-100ppm (which would be most beneficial for us) or 100-infinity – after all they are looking at spoiling foods – so will have to wait and see.  Please God may it work and we can finally know for sure which foods we can safely eat.

I’ve had the builders in this week and it’s been torture.  They’ve been re-rendering the side of my neighbour’s house but had to be in my garden to do it.  I also had my patio re-grouted, but am not happy – now it’s dry there is grouting all on the edges of my tiles.  The grouting is white and my tiles are charcoal grey slate – it looks a right sodding mess 😦

My electric company have taken the complete piss this week.  I’m £280 in credit and am paying them over £100 a month for my fuel, yet they emailed this week to say they are taking another £100 out of my account!  Er, why?!  Their reason was “with the beast from the East this spring you may have used more fuel than normal and we’re worried you will use more fuel than you’re paying for this winter”.  They failed to mention we’ve had the hottest summer since 1976 and I’ve used less fuel for the past 3 months.  And unless they have psychic powers they can’t possibly know what the weather will be like this winter – it could be the warmest on record!  As it is I’m so much in credit I’ve already paid for my fuel until January, so I’ve made a formal complaint and said if they take a penny out of my account without my authorization I’ll report them to the Ombudsman.  Fucking robbers.

I’m now on day 57 of my cycle with no visit from Aunt Flo.  I’m still sleeping badly though, have rumbling period pain and my migraines have been ridiculous.  In fact, I’ve felt absolutely rubbish all week and my energy levels are zero.  My bestie came for a visit on Thursday and I was telling her the only bright spot was that my mood has been great all things considered – I forgot the Gods were listening.  Yesterday I was like a bear with a sore arse all day and then last night burst into tears for no reason.  This morning I’ve woken feeling proper poorly and unable to cope with any of it for another second.  Fucking hormones………they’re the gift that keeps on giving.

My Dad has been particularly unwell the past few weeks and despite having his 4 day holter monitor done a month ago, and his echocardiogram done over a fortnight ago, we have had no results from Cardiology.  I rang his GP this week to chase it all up and she’d heard nothing either, so suggested I contact the Cardio’s secretary at the hospital directly.  She told me the results could take 6-8 weeks, despite the fact I knew both results were already on my Dad’s file because I’d checked with the scanning department!! I told her it wasn’t good enough as my Dad keeps collapsing and she eventually agreed to make the consultant write to us with the results some time this week – why is every single thing such a fight? *sigh*

Sorry for such a grumpy arsed post but I’m feeling lonely, totally fed up and absolutely sick and tired of being sick and tired.  The prospect of spending yet another Sunday in my bed on my tod with nothing to do and feeling like death warmed up is monumentally unappealing and the jobs in my house are piling up with no prospect of me currently being well enough to tackle any of them, which is making me stressed.  I am still able to appreciate the fact that it’s Autumn here in the north of England, however, and how pretty everything is looking – here is one of the ‘main’ roads into my village this week – I realize every day of my life how lucky I am to live where I do 🙂

 

 

 

Testing for Histamine – BIG news!

I was lying in bed this morning listening to BBC Breakfast news.  They were doing a review of the newspapers and my ears pricked up when they started talking about a mobile phone sensor which could test to see if a food is off or not.   I know enough to realize that food goes off because it produces biogenic amines, of which histamine is one, and I was suddenly sitting bolt upright in bed feeling very excited!

Unfortunately the news presenter didn’t say which paper the article was in, so I simply Googled ‘phone sensor histamine 2018’ and found the research the piece was based on, which is taking place at the City University of Hong Kong.  The researchers were looking mainly at ways to test for spoiled foods, but I wanted them to know there was a huge world-wide patient population desperate for a way to easily test for histamine in foods because they suffered from either HIT, MCAD or both so I emailed the lead researcher A. L. Roy Vellaisamy PhD to briefly explain about us all and tell him how vital his device could be for us.

I couldn’t believe my eyes when, just a few hours later and on a Sunday, Roy mailed me back to say he’d read my blog and learned loads about how big an issue histamine in foods is for us.  Not only that, but he asked if I’d be willing to test his mobile sensor as they were trying to fine tune the device.  Is The Pope Catholic?!  Of course I’d like to test the device!!  Being able to test for histamine in foods on a mobile phone would revolutionize not only my, but most of your, lives.

I’m now just waiting to hear back about the logistics and what I’d have to do – I’ll keep you posted 😀

 

 

 

Weekly roundup

My life has hit an all time low this week.  I’ve had to buy hemorrhoid cream.  Fifty years of straining to give birth to ginormous poo courtesy of my overly stretchy bowel has finally taken its toll and I now have a slimy, ridiculously itchy grape hanging out of my bum.  Somebody shoot me 😉

The entire week has been taken up with photography-related gubbins, so apologies if this post bores you all rigid.  Tuesday night saw the return of our monthly beginner’s workshops and I teach the opening class.  It was full and I think it went well despite the fact my voice was still struggling a bit from doing the Scottish talk the week before.

Wednesday night was our first league competition of the new season at Camera Club and I’m delighted to say I won joint first place with myself for my Raven Tower picture and the selfie I called ‘Behind the Veil’.  I was chatting to the judge afterwards and she said:
“the lady in the scarf is beautiful, who is it?”
“Me!” I replied.
So she looks at me with my glasses on, my grey roots showing, my wrinkles and turkey neck and the fact I hadn’t even brushed my hair that night and replied, shocked “really?!  Are you sure?”
Er, what was she trying to say exactly? PMSL 😀
“Yeah, thank God for Photoshop and the fact it takes 30 years off me!”
To be fair I don’t look anything like I do in my selfies in real life – I’m 51 not 21 😉

I think I may have mentioned the fact that I’ve decided to go for my next photographic distinction and the deadline for submissions is 22nd of this month.  It’s taken the entire summer to decide which fifteen photos to use, get outside opinions on how to improve them, get them perfect, print them off and then I’ve spent three days this week mounting them onto 50 x 40cm board.  I’m finally done and it feels like a huge weight has been lifted from my shoulders!

Of course, all this activity lately has sucked every ounce of energy I possess from every cell in my body and I now feel like road kill.  My histamine levels are really high and I need some down time over the next couple of months to stabilize my health.  Not only that, but I’ve been neglecting my parents a fair bit and poor Bertie has had to come and plonk his bum on the keyboard in order to get himself noticed.

I have now gone 50 days without a period, hurrahhhhhh!!!!!  I still have daily, low level period pain though, backache and I’m seriously not sleeping but for the first time in 40 years this month I’ve been spared excruciating endo-related period pain and for that I am truly thankful 🙂

 

 

 

Visual disturbance research

A few months ago I came across some research on Visual Snow being done in the UK by the dept for Neuroscience at King’s College in conjunction with the Eye on Vision Foundation.  I’ve talked about my severe floaters here on my blog but that’s not the only issue I have with my vision and this research, amongst other things, is looking at the correlation between various types of ‘visual aura’.

Auras are a kind of hallucination – your eyes are seeing things which simply aren’t there but trust me when I say they are all too real to you.  There are various kinds of visual aura and, as per bloody usual, I have most of them – yes, I know I’m greedy 😉

VISUAL SNOW

The research is focusing on Visual Snow, which is a hallucination which looks just like the name suggests – falling snow or moving white noise.  Luckily for me mine is only  mild and I only really notice it in low light against dark objects and if I concentrate on it, but for some people it is hugely debilitating and they spend their whole lives trying to see past the bits.  Mine is white snow but for other people it’s multi-coloured.  Here is what mine looks like against a black background (you will have to concentrate for a few seconds on the black square for the snow to become visible):

BLUE FIELD ENTOPIC PHENOMENON

I noticed this for the first time earlier on this year and it totally freaked me out.  It was a lovely, sunny spring day and my friend and I were sitting down by the river.  I lay back on the grass to gaze up at the blue sky……….and saw dozens of white flashing wriggy dots that looked a bit like small worms!  My initial thought was that I had a parasite in my blood and the second thought was that my retina had become detached, something those with Ehlers-Danlos Syndrome are prone to, but luckily I was only at the hospital the day before with my floaters and had had a thorough eye exam so knew my retina were actually fine.  I came home and went on Google only to discover Blue Field Entopic Phenomenon – what I was seeing were leukocytes moving in the capillaries of my retina.  I only have BFEP when I look up to a bright blue sky and mine looks something like this – the white dots really are very bright and sparkly:

FLOATERS

I’ve talked about my floaters before here on my blog.  Floaters are caused by the vitreous gel inside the eye which is clumping together and causing a shadow to be cast on the retina, although I can weirdly even see them when I have my eyes closed and it’s dark.  Like all shadows they are blurry and if there are large or numerous floaters this can cause problems with vision.  Here is what my eyesight looks like due to floaters – they drive me absolutely and utterly insane:


The scary thing is that there is currently zero research being done on floaters.  None.  Yet they dominate my life, have left me feeling depressed, cause severe eye strain and headaches, make me feel dizzy and disorientated due to the blur they place on my vision and have made what used to be pleasurable hobbies, like my photography and reading, difficult at best and impossible at worst 😦

MIGRAINE AURA

I started with aura migraines in my late teens and have been having them ever since.  The hallucination usually starts off as a small flashing light in the periphery of my vision which you can see in the first picture but within minutes covers most of my sight.  They can happen at any time and have frequently woken me from sleep – I actually dream I have flashing lights and wake up suddenly in the wee small hours to find the lights are real and I’m starting with a migraine.  I don’t have head pain with aura migraines (unlike my common migraines which are excruciating) but they do make me feel spaced out.  When you read about aura migraines the blurb usually says they only last a few minutes but mine can last anything up to an hour or even longer unless I can manage to lie down with my eyes shut in a dark, quiet room or eat some carbs, something like a slice of toast is good.  Apologies for the poor second image – it’s the best I can do, but my actual aura is like having a kaleidoscope in my eyes!

Alongside these visual disturbances I also suffer from other sight problems, including:

  • Light sensitivity (which, when my ME was severe, was like living with a firework display in my brain 24/7, even with my eyes shut)
  • Difficulty seeing in low light
  • Halos round lights at night – particularly bad when driving
  • And related symptoms like tinnitus and headaches.

There has to be a correlation between all these symptoms – when you have one it’s much more likely you’ll have some, or all, of the others and I for one am desperate for answers and treatment to be found, particularly for my floaters.  It will be just my luck, though, that the treatment will involve some drug or other which I won’t be able to take because as you know my mast cell disease causes me to have anaphylaxis to just about every medication known to man :-/  However, in taking part in this research I hope I’m helping towards the understanding of these conditions and that people in the future won’t have to suffer in the way I do.

Weekly roundup

I’m kinda glad this week is over.  Although I really enjoyed doing my photography talk up in Scotland it was months of preparation and worry about how my health would hold out which has felt like a lot of pressure and my mast cells don’t do pressure – I’ve had hives on my bum for weeks.  My Mum & Dad (well, my Mum……..my Dad wouldn’t think to!) bought me a card and a bunch of flowers to say “well done” and I was really touched.  Due to Mum’s alcoholism she hasn’t done anything like that in years because she hasn’t cared less about my life.  Now she’s massively cut down on her drinking she does seem to be much more engaged.

I am on day 43 of my menstrual cycle.  Dare I hope that this is the beginning of the end and I’ll finally be saying goodbye to The Curse which has tortured me for 40 years?!  Every day for the past fortnight I’ve felt like my period is going to start as I’ve had bloating, migraines, period pain, backache and exhaustion but as yet there is no sign and my boobs aren’t sore – they’re always sore leading up to my period so that’s weird considering I’m having all the other symptoms.  My back pain is terrible, though, the worst it’s been in years and I have had horrible shooting nerve pains in my legs and feet – I’ll be lying there in bed and all of a sudden it’s like I’ve been stung by a cattle prod :-/  A couple of years ago I had the same pains in my boobs and was sent for an early mammogram but all was fine and they eventually disappeared, so I’m sure it’s ‘just’ my hormones.

My Dad was due to have an echocardiogram of his heart on Thursday, which is basically an ultrasound to check the structure.  I offered to go with him but as he wasn’t seeing the consultant or anything he said he’d be fine and my Mum went instead – he’s had an ultrasound on his gallbladder & kidneys so knew what to expect.  Afterwards I rang to see how it had gone and he said “Grand.  She put the sticky pads on my chest and I was in and out in 10 minutes” which I knew wasn’t right.  The sticky pads are used to do an ECG (ie heart rhythm trace) and as he’d already had a 4 day ECG done he didn’t need another.  I quizzed him a bit more and he was adamant that he’d had the sticky pads and no scan, so I phoned the hospital to find out what was going on.  Sure enough, he’d had a scan and they had the results on the screen.
So I asked him again.  “Did the lady use a wand or anything on your chest Dad?  Was there a screen next to you?”
“Oh yes, she pressed into my ribs, then I had to lay on my side and she pressed again.”
“And you didn’t think to tell me this when I asked the first time?”
“Should I have?”
Bless him, you can’t trust a word that comes out of his mouth.

Today I really must do some housework because the place looks like a bomb has hit it.  I haven’t touched housey-type jobs in 3 weeks as I was conserving energy for my talk but I can’t put it off any longer.  There’s one huge obstacle though…………….I fucking hate housework.  And paperwork.  And having to put away my garden furniture for winter.  And clipping the dog.  And scrubbing poop off the bird feeders.  And changing halogen bulbs in recessed ceiling lights (why in God’s name has that been made so complicated?!).  And ringing the electrician to come and look at my faulty outside light.  In fact, anything which doesn’t involve taking photos 😉  I hope the Universe knows that I need a lotto jackpot win so that I can employ a servant to do all this boring shit for me and sorts that out tout de suite if not sooner!