Category Archives: Myalgic Encephalomyelitis

Weekly roundup

I haven’t been touched by another human being for a decade.  My Mum stopped hugging me when her alcoholism took off, my Dad isn’t a hugger and I don’t have a partner, so my little dog Bertie is the only physical contact I have with another living creature.  Monday he went to the vets for a little operation.  He needed his teeth cleaning but also had a deformed dewclaw removed, which sounds trivial but is actually classed as an amputation because rear dewclaws are attached by bone just like a thumb.  Even though he’s elderly now at 11 and has a heart murmur I wasn’t concerned – he’d had anaesthetic before for his castration when he was little and all went well – so imagine my horror when I went to collect him only to be told they’d had to ring the cardiac specialist during his operation because his heart had been going like the clappers 😮  It had started the second he was given his pre-med, so I’m assuming he had an allergic reaction to the drug.  Thankfully he pulled through and is recovering well but I swear my blood turned to ice when the vet was relaying what had happened – I simply don’t know what my life would be like without him.

I barely got any sleep Monday night as Bert was in pain and couldn’t get comfortable, so Tuesday I was fairly knackered.  Following my Dad’s hip replacement last Friday, however, my parents are needing much more help than usual so despite my exhaustion I was in town helping them out.  My youngest brother and family have really stepped up to the plate though for which I am truly grateful and are making them meals, getting my Dad his newspaper each morning and going for prescriptions etc.  My elder brother and family haven’t even been to visit, despite living only a few streets away :-/

Weds I went to visit a friend as she has been having awful problems with her 9 year old daughter, who’s suddenly developed severe anxiety disorder.  My friend is so worked up and getting so little help that she literally can’t eat or sleep and cries at the drop of a hat, so I popped round just to offer her a shoulder.  I can’t believe in this day and age there are still so few mental health services for children – it’s a bloody disgrace.

Everything caught up with me on Thursday and I felt stupendously MEish.  Despite having a banging headache and spinning vertigo I had to go into town for Bert to have his post-op checkup and when I got back at 4pm I was literally dead on my feet.  Desperate to just get into bed I was accosted by my neighbour, irritatingly saying he’d been trying to get hold of me.  His landline had developed a crackle and the BT engineer needed to check the box on the side of my house which feeds his line, however as he needed to go up a ladder he wanted to drill a hole in the side of my house to secure it – health and safely ‘n all that (it’s a tiny cottage for heaven’s sake, not the bloody Clifton Suspension Bridge!).  I said no.  There are water and gas pipes buried in the wall, not to mention the fact my house is up for sale and the last thing I want is a hole drilling in the outside render which I would then have to fill in and re-paint.  My neighbour stomped off in a  huff and I wearily ran myself a bath, the first time I’d had a wash or cleaned my hair for 6 days!  I hadn’t been in the water 5 minutes when the doorbell went.  It was the sodding BT engineer and before he’d even opened his mouth I barked “I’ve already told my neighbour you’re not drilling in my wall!” and virtually slammed the door in his face.  I got back in the bath but by then the water was luke warm and I was pissed.  I got into bed and cried with exhaustion and the unfairness of not even being allowed half an hour to have a bath without someone wanting something from me.

I’d dozed off watching telly when, at 9pm, my phone went.  WTF?!  It was my Mum to say my Dad’s leg had swollen like a balloon and there was a bruise the size of a grapefruit behind his knee.  I had no clue what to do.  The hospital had given us a post-surgery helpline number to ring so I tried that, but it was only open during office hours – useful!  So I rang the ward at the hospital, but the nurse said unless she could see it she couldn’t advise us and told me to ring the non-emergency NHS number 111.  It’s fucking useless.  I tried to ring it last month when I found my disabled friend on the floor having fallen out of bed, but after being on hold for 40 minutes gave up and rang 999.  This time, after being on hold for 20 minutes I also gave up and went online to fill out a form which gave me no opportunity to actually describe what was happening.  Luckily, though, the minute I wrote my Dad was on the blood thinner Warfarin it told me I needed to see a Doctor and I was allowed to request a call back from a medic.  Without even seeing him, the Doctor told my Dad “you should be fine” (reassuring, not!) and to see his GP in the morning.

So at 8.30am Friday morning I spent 20 minutes on hold trying to get a GP appointment.  They were short-staffed due to sickness, so in the end he had to see a nurse who didn’t really have much clue what was going on and removed his dressing to check his wound, even though we’d been told at the hospital not to do that under any circumstance :-/  He was sent home after being told it was all “normal”, despite the fact no-one could tell him why he’d suddenly had a massive bleed from his thigh to his calf a whole week after his surgery.

I was awake most of Friday night with a thumping, sickening migraine which made my right eye bloodshot and the right side of my face swell up.   Of course I was.

Saturday I contacted my bestie and said if I didn’t speak to someone who wasn’t a) old, b) crying or c) furry soon she would be visiting me in the local mental asylum and, bless her, despite being really unwell herself she drove 45 minutes down the motorway to meet me for lunch and spent the first hour listening to me offload.  I’d do a heart emoticon, if I knew how to do that in WordPress!

It’s Sunday today and after taking Bert out this morning I want to put my Christmas tree up.  I haven’t even given Xmas a seconds thought and am now panicking that there is only a fortnight to go and I haven’t even bought my cards yet, let alone written or posted them.  I’m sure everyone would understand if I didn’t do Xmas this year, but I actually love Xmas (well, I would if I didn’t have to spend any time with my drunk Mother) and putting my tree up is something I’d like to do for me.  I’ve treated myself to a lightbox for Christmas to photograph flowers, but have decided I’m not waiting til 25th and am going to try it out this afternoon – I think I’ve earned a treat.

p.s. after my meltdown to the Blue Badge team I receive an email from them to say my renewal had been successful – they probably feared for their lives if they refused me 😉

Weekly roundup

I have had one of the busiest times of my sick life this past 2 months and I thought that after I’d done my talk in Scotland last week that I could finally rest up, because I was on my last legs.  Looking back now, that seems a bit………..naive 😉

I can’t cope with the sensory overload, not to mention the physical effort, of going to a supermarket, so have my groceries delivered to my home courtesy of Tesco.  I’m in love with Tesco – they are the 8th wonder of the modern world – that is until Christmas, when the battle for delivery slots becomes a catfight to the death.  I have a delivery saver plan and therefore have access to the Christmas week delivery slots early, along with tens of thousands of other delivery saver plan subscribers.  We were informed that the slots would be available at midnight on Tuesday night and I knew I had to book my delivery then or I’d have to actually visit the store on Christmas Eve and, having done that last year and barely survived, I’d rather starve.  However, I have been so exhausted recently that there was no way I was going to be able to stay awake til midnight, so I went to sleep around 9.30pm and set my alarm to wake me, which it unceremoniously did at 11.45pm.  The ringing felt like a bomb exploding in my brain but I managed to come to and blearily got myself ready, finger poised, to book my slot on the dot of 12.  With a minute to go, however, I panicked and decided to reserve a delivery for Monday 23rd just in case something went wrong (last year the website crashed and I ended up delivery-less!).  Then on the stroke of midnight the slots for Christmas Eve appeared…………and they all said “unavailable”. Say WHAT?!  Either there were shoppers out there with freakyily speedy index fingers, or Tesco had failed to tell us they WEREN’T FUCKING DELIVERING on Christmas Eve.  Thankfully, though, I had my reserved slot on 23rd, and it’s a damned good job because at 3 minutes past midnight the site crashed.  Again!

It goes without saying it took me about 3 hours to get back to sleep and I woke on Wednesday feeling like I’d been dragged through a hedge backwards.  My plan was to rest up all day because I desperately wanted to go to my Camera Club in the evening, but the Universe had other ideas.  My Dad is on the waiting list for a hip replacement and it was booked for 24th January, but at 2pm on Wednesday afternoon the Hospital rang me to say they had a cancellation for Friday this week and would he like to come in?  Holy crap!  So then I had to go through to town to break the news to my (very nervous) Dad, who’s never spent a single day let alone a night in hospital in his life.  Mum and I got his hospital bag out (they both have one packed ready in the wardrobe for emergencies, well they’re 80 and we think it prudent) while my Dad got in the shower, as you’re supposed to bathe with antiseptic body wash for 5 days before the op.  We then had to change his bed, because he needed to use fresh sheets every day after his shower.  I did still make it to my Club, but by the time I got home at 11pm I was so ill and exhausted my brain was swimming, I was literally seeing stars and could barely focus.  Proabably shouldn’t have been driving – don’t tell anyone!

Thursday I’d arranged to go to my elderly, disabled friends’ house to finally finish his unpacking.  I knew I should cancel because I needed to conserve my energy, but he’s been in his new house 2 months now and hasn’t had the internet all that time because his laptop, modem, printer etc. was still in a box in the spare bedroom.  So I made the effort to go, and thank God I did because I arrived to find his house freezing and him flushed.  Neither the heating or hot water had come on and he obviously had a temperature.   I discovered his gas boiler had no pressure, so I re-pressurized it which got the heating back on but there was clearly a leak somewhere, so I arranged a visit from the plumber the following day.  I then forced him to ring his GP (he wouldn’t have if I hadn’t made him) who told him to go straight down to the surgery.  He landed back with stronger antibiotics because his chest infection was back with a vengeance (it never went – he should have been admitted to hospital the other week for heaven’s sake) and an insulin injector, because she’d found his blood sugar was sky high (he’s type II diabetic).  I wonder, now, if I hadn’t gone that day whether we’d’ve found him the next morning in a hypothermic, diabetic coma :-/

Thursday night I felt like the undead and barely slept in case the alarm didn’t wake me the next morning.

My Dad had to be at Hexham Hospital for 7am, which meant me getting up at 4am.  I have fucking M.E. and waking from deep sleep in the middle of the night, then having to get dressed, eat and venture out into the pitch black freezing cold of winter was never going to make me feel my best.  I dropped Bertie off, picked my Dad up and at 5.30am set off to make the 80 minute journey over the Pennines to the North East.  It’s a windy, twisty, narrow road over the mountains and my brain lurched around in my skull every inch of the way, which made me massively motion sick and at one stage I thought I was going to have to pull over to throw up, but I somehow (and I really have no clue how) got there without crashing and killing us both.  All went well and he was home at 5pm the next day – as it was Saturday my brother offered to go and collect him which was great.  My Dad’s not going to be able to drive for the next 6 weeks though, so it’s going to be a busy time for me – my life is never anything but busy and I just have to give up the expectation of it being anything else!

I’ve woken with a stonking migraine this morning and a raging sore throat (my sign that I’m way overdoing it).  Of course I have, it’s all been too much this week, but I swear I’m going to deck the next person who says to me “you need to rest more”.  Which part of my life would they like me to cut back on, exactly?  Should I leave my sick, disabled, friend to die in a hypothermic, diabetic coma or to live without central heating or hot water in the middle of winter, or without his laptop even though he’s too ill to leave the house so relies totally on the internet for just about everything?  Or should I leave the care of my parents to my siblings, who all work full time and aren’t available at the drop of a hat at 7am on a Friday morning to take my Dad to hospital, or at 11am on a Tuesday morning to drive my Mum 90 miles for a cataract operation?  Or should I not walk my dog?  Or should I not eat, which would negate my need to cook?  It’s not like I’m doing stuff unnecessarily, well apart from going to my Camera Club but even that feels vital – I need something of my own in amongst looking after everyone else.  Instead of the pseudo-caring advice I’m given, it might be more useful to me if these people who tell me to rest more actually fucking helped me in some way – offered to walk the dog, for example, or brought me round a casserole, or offered to change my bed or hoover my floors because I currently don’t have a cleaner.  But they don’t because that would mean they had to put themselves out.

I’m a bit tired and grumpy this morning, as you can probably tell 😉  I’d sell a kidney for someone to go and make me a brew or bring me breakfast in bed, but as I gave up waiting for my Prince to arrive on his white charger about a decade ago I guess I’ll have to do it.  Then I’ve got Bertie to take out, despite the fact it’s -6C outside (and will feel like -10C on my scooter!) and my skull feels like it’s being stabbed by ice picks.  I’m delighted that my Dad is OK after his operation, but I have to be honest and say that just now and again I wish someone would care for me, just for a little bit.  Dream on!

Note:  It’s 8am and I’ve just logged on to my email.  The first mail of the day isn’t from the Lottery saying I’ve won the jackpot, but from my parents’ energy company requesting a meter reading from disabled customers who are on their ‘extra care/at risk’ register.  What the fuck ever happened to Meter Readers?  Y’know, people who came to your home to take a goddamn meter reading?  It’s not like we don’t pay a shit load of money each month for our energy, more than ever before, yet we receive fewer and fewer services.  It’s another chore to add to my list.  And the first person who says to me “have you heard of smart meters?” will die.  Just sayin’.

Weekly roundup

My week started at 5.50am with me, in my dressing gown in the pitch dark, following my dog around with a jug.  Over the past 18 months he’s been drinking more than he used to, so the vet requested an early morning pee sample to test for diabetes and kidney issues.  Every time Bert cocked his leg and I placed the jug underneath, however, he looked at me in horror and refused to widdle.   I can’t blame him, I’d’ve felt the same way 😉

I eventually managed to catch a little bit of urine and it turned out to be fine.  But he is having a small operation next week.  His teeth need a scale, plus he’s had a deformed dew claw since he was born and it’s a nightmare to trim.  It grows like the clappers and has to be cut every 4 weeks, but it’s becoming increasingly painful for him to have done and he yelps 😦  So the vet thought it best to remove it, but it’s classed as a digit amputation as the rear dewclaws are attached by a bone, a bit like a small thumb 😮

My Dad had his cataract surgery on Tuesday.  It was at Sunderland, 90 miles away, and I refused to take him.  I’ve already been once this month with my Mum and both of them are due back for checkups in December for which I’ll be taking them, so I made my lazy-arsed brother go this week instead.  He works 3 shifts, then has an entire week off – I see no reason why he can’t do more for his parents.

Wednesday I was guest speaker at a Camera Club in Scotland.  I’d battled a throat infection for days and was worried my voice wouldn’t hold out, but apart from the last 5 minutes when I sounded like Donald Duck it went OK.  Well, I say that but it was an interesting evening and I’m going to do a whole post on it just because I can – so watch out for that.

Since my surprise period 12 days ago I have been plagued by severe migraines and I spent most of Friday drinking ibuprofen suspension like it was pop (I’m allergic to all other forms of migraine medication).  I’m so over the whole hormone-induced head pain I can’t even tell you.  I woke at 1am today with the right side of my brain throbbing and as I type this it feels like rats are gnawing on my skull.

Also on Friday I was informed by my estate agent that someone had requested to view my house the next day.  Eeeek, it wasn’t much notice so after I walked Bertie in the afternoon I did the 14 mile round trip into town, in Friday rush hour traffic (which did my migraine no favours), to spend £10 on flowers and to get some polish ’cause I’d run out.   My cleaner has quit and the house was a bit of a pig sty so I spent the whole of Saturday morning cleaning, tidying, washing the front gate (covered in bird poo), sweeping the yard, washing the front door and all the other stuff you do to make your house immaculate.  I palmed the dog off onto my neighbour as he barks his head off at visitors and I can’t concentrate and when 2pm arrived I waited.   And I waited.  And I waited.  And the bitch was a no show.  Four hours later I get a text forwarded from my estate agent apologizing but giving no explanation and asking if she could book another viewing for in the week.  This is the 4th booking this person has made and she hasn’t shown up for any of them.  Needless to say, I said no and that I wouldn’t be accepting any more viewing requests from her.  Today I can barely walk as I’m crippled with back pain from hoovering and mopping all the floors and both wrists and elbows are on fire.

In amongst all the dross there has been some good news but.  Each year, the Photographic Alliance of Great Britain holds a competition where they choose 60 photographers from the 40,000 members of Camera Clubs around the UK they deem to be a master of print.  And I am absolutely thrilled to say that, for the 2nd year running, I have been chosen.  I still have to pinch myself that little old me, lying in my bed in the wilds of the lake district has found something that, not only can I do and which gives me huge joy, but has reached this level of acclaim.  It’s freakin’ awesome 😀

Weekly roundup

Mr Sod and his Law have made their presence known this week.  I’m guest speaker at a Camera Club on Wednesday evening and have gone down with a raging throat infection.  My left tonsil is huge and I want to gag every time I swallow 😦  I also have a headache and feel generally bleugh.   WHY NOW FFS?!!  I have no clue how I’m going to talk for 2 whole hours.

My 75 year old, disabled friend who fell out of bed last week was discharged from hospital less than 24 hours later.  He was admitted with a fever of 101C, a chest infection and abnormal heart rhythm (he’s already had a heart attack, has a stent fitted and has angina).  He spent 12 hours in A&E, without any food despite being diabetic (he’d barely eaten for 3 days), and was eventually placed on the acute admissions ward at 1am.   He was given IV antibiotics, there were no beds, so at noon he was asked if he wanted to go home.  “Yes please” he says, because there isn’t a person alive who actively wants to be in hospital.  So they whipped his drip out and sent him home.  Alone.  With no carers or any other help in place.  I was fucking livid.

I met him this morning for our weekly brunch at a local cafe.  He looked awful and had apparently fallen asleep in the car in the car park.  He only lasted til 11am before telling me he had to go home because he was exhausted.  I’m going to ring his GP surgery tomorrow and speak to his doctor because something is clearly not right and men are hopeless, on the whole, at telling doctors what’s really going on.

Aunt Flo paid me a surprise visit this week and it was most unwelcome.  I had my last period 132 days ago and had thought I was well on my way to full menopause, to the point where I’d chucked out all my sanitary wear, but obviously my ovaries have other ideas.   I’m now consulting with my solicitor to issue my hormones with an eviction notice.

On a more serious note, for the past few months I have had god awful nerve pain in my legs.  Both shooting, electric shock type pains and more general heavy achiness from the knees down on both legs.  I’ve had continual back and hip pain for years so thought it was coming from there, but the day my period started the nerve pain almost disappeared!  Very odd.  It is still present, but has gone from maybe a 8/10 to a 3/10 and for that I am truly grateful.

I made a complete and utter arse of myself this week.  I have a gas fire that works from a remote control.  A couple of weeks ago the knob which turns the flame up and down started to get really stiff, so on Tuesday I called out the gas engineer to take a look.
“Have you tried new batteries?” he asks.
“In the remote control y’mean?  Yes I have” I reply, smugly.
“No, in the fire”
I look at him puzzled.  “Didn’t know there were batteries in the fire” I admit, turning crimson.
So he pulls a black box out from under the fire, slides the back off and shows me 4 x AA batteries.  “If you haven’t changed these in 8 years I’m fairly sure that’s the culprit” he tells me, trying not to laugh.
And sure enough he changes them and the knob works perfectly.  That little lesson in being a complete airhead cost me £50.  FFS.

Wednesday I made it to my camera club.  I haven’t been for a month as I’ve other things on so it was nice to be back.  It’s a much more relaxed club than my old one, with younger members and more light-hearted banter but although some of the older members make a point of talking to me none of the women my own age do.  They all just sit in a group together and don’t even look in my direction, which is a bit shit and I don’t feel all that welcome.

Yesterday I had coffee with a couple from my old camera club.  They’d contacted me out of the blue to suggest meeting up and I was really touched they wanted to stay in contact.  I didn’t even know them that well as they’d only been at the club for one season, but we had a lovely couple of hours catching up and it was nice to know that at least some of the members were missing me.

Well, it’s time for another salt water gargle (eugh!) and a honey and lemon tea.  I’m resting up for the remainder of the day and having a binge fest of Love Island  Australia on catch-up.  Thank God I’m no longer in my twenties and feeling pressure to find my soul mate – it all looks like far too much hard work and disappointment and makes me happy I live with my dog and not a bloke 😉


Weekly roundup

I’m a bit late with my roundup on account of the fact I’ve spent the morning with paramedics – more on that shortly!

My week actually started out relatively OK.  Well, if you can ignore the fact I was feeling shite and on the verge of a relapse ME-wise that is.  As I mentioned in last week’s roundup, I’ve been doing wayyyy too much in recent months and it’s now seriously affecting my health.  So, this week I decided to cancel everything in order to rest.  Sounds simple doesn’t it, but in reality it’s like wrestling a bear.

Monday I’d arranged to meet my 75 year old disabled friend, Dave, at a local furniture centre to choose a riser-recliner chair, on account of the fact he can now barely get out of an ordinary chair to standing position.  It took 2 hours, not that I minded, but I’d already spent the morning helping my parents, then 2 hours with Dave, then I walked the dog on the way home and by that stage it was 3.30pm and time for bed.  So Monday was a bit of a right off.

There’s also the minor irritants of still having to feed myself, stack the dishwasher, bathe, shop and walk the dog every afternoon (and 3 mornings).  And let’s not forget the fact I’m guest speaker at another Camera club (booked a year ago!) in 10 days time so need to put together a 2 hour speech from scratch.  Oh, and I’m selling my house and this week my fucking cleaner decided to quit on me, so now on top of feeling rubbish and everything else that’s going on I’m having to change the bed, hoover and mop the floors, despite the fact it kills my back.  Other than all that, though, I’ve been resting – honest  😉  I’ve had to, because for 3 days I had one of the worst bouts of vertigo I’ve had in ages and every time I moved my head the entire room spun.

Friday my Mum was having cataract surgery at Sunderland 90 miles away and it was booked for 10am which meant getting up at 6am, breakfast, dressed, dog walked, into town and Mum picked up for 8am.  I was fucked before we’d even set off.  It all went brilliantly, though, and we were actually back home by just after lunch (no mean feat when it’s a 1hr 45min drive each way!).  Of course, I had the dog to walk in the afternoon, so eventually got back home absolutely exhausted……..only to find a car parked in my driveway, blocking my garage.  It was a customer of the upholstery business at the end of my drive.  Regular readers will know that for 3 years the twat who leases the buildings for his upholstery business has allowed, nay encouraged, his customers to park in my drive meaning I can’t get in or out.  It’s illegal because the right of way that exists is to “pass and repass” which means to travel over, not stop on, plus it causes a legal “nuisance” to me.  But he doesn’t give a flying fuck.  I wouldn’t care but he owns the top part of the drive, so I asked the car owner to please pull forward 6 feet so I could get in my garage at which the upholstery guy went ballistic at me, red faced and ranting that I was being unreasonable.  I was as polite as always and stood there while he shouted, then asked the customer to please move his car.  Again.  Which he did.  After I parked up, however, I went into the upholsterer’s office and told him I had had enough and was taking legal action against him.  I’d already got it all set up because this has been going on for nearly 4 years now, so I made a quick call to my solicitor who will sending a pre-action letter this week.

The thing is, though, that I am selling my house so this “dispute” will now need to be made clear to any buyer, which is bound to put people off and may affect the sale.  I can’t be verbally abused every time I need to leave my house, though, especially as shit-for-brains is breaking the law and I am doing absolutely nothing wrong!  So it needs sorting once and for all.

As if all that weren’t bad enough, I enter the house to find a note through the door – Amazon had delivered a parcel in my absence which had been placed in the “grey bin with the black lid”.  Er, you mean the dust bin?  W-T-actual-FUCK?!

I was telling the tale on social media afterwards, and one of my friends says “I haven’t seen one of those since 1993.  The delivery guy obviously didn’t know it was a dust bin”.  Er, really?  The delivery note said “grey bin” so he was well aware it was a bin, but even if he wasn’t I’m not sure what else it could be masquerading as?  The giveaway would have been when he took the lid off to place my parcel inside and it was full of rotting food and 2 black bags of disgustingly smelly dog shit.  That I’m fairly sure, should have given the game away.  Needless to say I then spent the next 30 minutes chatting online to Amazon’s complaint’s department in some far-flung province of India because they don’t give you a goddamn email address to write to and Indian labour is cheap – who cares they don’t know what an English dust bin looks like either and couldn’t give a flying fuck in any event.

Saturday, of course, I spent the day with a stupendous migraine.  Par for the course after all that driving, not to mention stress.  Plus the vertigo was back.

Sunday mornings, after I’ve walked the dog, I sometimes meet my elderly, disabled friend Dave for coffee at a local cafe.  I had no intention of going today because I was feeling rubbish (no pun intended) but Dave had emailed me on Friday to say he wasn’t feeling well, so I decided to make the effort and see him.  He goes every week at 9.30am, but when I arrived at 10am he wasn’t there.  I waited for 10 minutes then started to worry and, to cut a very long story short, finally rocked up at his house to find him lying stark naked on the bedroom floor having fallen out of bed 😦  He’d lain there for 4 hours, but despite being cold he looked flushed, had a banging headache and a nasty cough so Sherlock Holmes here deduced he had a chest infection which is why he’d gone off his legs.  I rang for an ambulance.  While we waited I managed to get him sat upright on the floor, get his pyjamas on, socks and a sweater, got him a hot drink and made him eat a cracker (he’s diabetic).  Two hours later, with a confirmed raging temperature, chest infection and irregular heartbeat (he’s already had a heart attack, has a stent and suffers from angina), he was taken off to the Infirmary – I’ll ring at 6pm to find out which ward he’s been admitted to and will go through to the city tomorrow to see him.  Who needs to rest anyway?!



Weekly roundup

I am just about on my knees with exhaustion.  This month has been wayyyy too much for a person with M.E., let alone all my other issues, and I’m at risk of having a relapse if I don’t rest more.  However, my parents both have several hospital appointments looming including my Dad’s hip replacement surgery and my house is still up for sale, so rest isn’t on the cards any time soon despite the concerns I have about the impact on my health.

Monday was my Dad’s first appointment with Rheumatology regarding his suspected Sjogren’s Syndrome.  As you may remember, as a last resort to try and find out the cause of his severe sensorimotor polyneuropathy the Neurologist at the RVI ordered a lip biopsy to test for SS which showed mild inflammation in both his lip and neck glands.  We were referred to a local rheumatologist, but as per sodding usual none of his test results had been sent through with the referral so when we saw him he had absolutely nothing to go on.  It’s the 21st Century, the entire universe is connected via the internet…………apart from the NHS which doesn’t seem to think that having access to patient’s notes is a priority.  FFS.  Despite that, the Rheumy was excellent.  Really knew his stuff, as well as knowing about CIDP (my dad’s initial diagnosis, which has since been changed) and MGUS (which my Dad also has).  He did a thorough exam and took 7 phials of blood to test for all the things my Dad has already been tested for several times but of course the Rheumy didn’t know the results of – and we wonder why the NHS is skint :-/  He’ll get back in touch when the tests come back and he’s heard back from the RVI regarding my Dad’s lumbar puncture, nerve conduction study and precise lip biopsy results.  It was a really good appointment though and I wish all the Consultants I came across were that clued up.

Tuesday I went back to my disabled friend’s house to help him unpack yet more boxes following his move.  My best mate thinks I’m mental for doing this when I have so much of my own stuff going on, however he is severely disabled, 75 years old and has no-one else to help him.   There are some things you can’t hire people to do – you need someone you know and trust to put your undies away, to sift through your most personal papers and to hug you when you come across the box containing photos of your dead wife.  He is also a bit confused, so needs someone he knows to help him make decisions on what to keep and what to chuck out and to be patient with him while he makes up his mind.   I’ve been totally alone and needing personal stuff done myself and when I am old and disabled as he currently is I will have no-one to help me.  If you’ve never been in this position you have no clue how it feels and he needs empathy and compassion, not left to get on with it.

Thursday I met said best mate for lunch.  I hadn’t seen her since before my London trip, so it was lovely to have a proper catch up and to get out of the house for a while.  She totally saves my sanity 🙂

My cleaner was off for the 3rd week running with a bad back, so Friday found me changing the bed, doing laundry and cleaning the house as I have another viewing today.  I really don’t need her to be awol at the mo and I know it’s irrational to get the hump with someone who is injured but I have it nevertheless!

Saturday I was up at 5.15am to go up to Edinburgh for the HEDGE study.  Look out for a post on that in the next few days.

This morning, as I mentioned above, I have another viewing on my house so I’m having to get up early to take Bertie out then make the house immaculate.  This house selling malarkey is knackering and on top of everything else that’s going on all feels too much.  However, it has to be done so I’m just gritting my teeth and getting on with it.  Wish me luck!

What’s it all about, Alfie?

I can’t believe I’m going to tackle the meaning of life at 7am on a Wednesday morning before I’ve even eaten breakfast and with severe brain fog, but I like a challenge 😉

Most of us spend our lives searching for meaning and purpose.  It’s so easy to trudge along on the treadmill of existence, repeating the same steps each day yet going nowhere, and in the blink of an eye we’re 70 and wondering what our life has all been about.  I’m sure that’s why most people have children – to give their life meaning – while others are married to jobs or causes.  It’s difficult enough to find a reason for existence when we’re healthy, and a different kettle of fish altogether when we’re ill, having a family is out of reach and we’re unable to work or take part in society as healthy people do.

When I was bedridden with M.E., lying alone in solitary confinement for 23 hours each day for years on end, I had to find some meaning to my life or I might as well have just topped myself.  I’ve always had rescue pets and at the time I first became ill I had a cat, Pudding.  He needed me and without him I had no reason to stay alive – he saved my life on more than one occasion.

After a couple of years I joined an online M.E. support group and eventually became involved in the running of the group and its website.  Sharing my story with other sufferers, particularly those new to the disease, gave purpose to my suffering and it’s something I’ve done ever since – if I can help just one person not to feel alone then the effort involved is worth it.

Over the years I’ve written several articles in charity magazines and my story has appeared in the press.  I try and educate whenever I can because there is so much misunderstanding and lack of empathy for people with not only my diseases but chronic, invisible illnesses in general, and that can only be changed through education.

I’ve also taken part in various research projects so that hopefully people with my diseases in years to come won’t suffer the way I’ve had to.

I can both knit and crochet, so for all the hours I am forced to spend in bed I make items for charities, particularly the knit-a-square foundation in Africa.  Helping others less fortunate than myself is a reminder to count my blessings – I may be sick but at least I’m not an orphan with AIDS living next to a public sewer in a shanty town in the baking heat and surviving on less than $1 a day.

Photo of crocheted children's vestsWhen my last cat died, and I had started to improve somewhat from M.E., I took on a rescue dog instead!  Abandoned animals are out there in their millions waiting for a loving home, so it’s a win win – they need me and I need them.

As I entered my forties first my Mum got really sick and then my Dad, so I was forced to take on the role of Carer.   It’s not something I would have chosen but I didn’t hesitate because I love them and it gave my life new purpose.  It’s not been easy and can be really stressful but they spent years looking after me when I was really poorly and now it is my turn to look after them.

In my late forties I discovered photography.  It’s really the only thing in decades I’ve done solely for me rather than to help other people.  Having any kind of creative hobby feeds the soul and for the first time in years I woke up excited for the day ahead.  I now also give back, teaching as a volunteer and sharing my passion for photography as a guest speaker.

I’ve also, over the years, provided employment for 9 people as either cleaners or dog walkers. And while it’s tempting to think of ourselves as burdens on the NHS and social services we also help provide employment for doctors, nurses, social workers, OTs, physios and all the other people involved in our care not to mention the companies from whom I buy equipment, aids and adaptations – yes we need them but without sick people they’d all be unemployed, let’s not forget that.

I was bedridden for a decade and still spend 18 hours of every day under the duvet.  It’s easy to think of myself as useless, a burden and unable to contribute to society but that’s not the case.  I possibly have time to contribute more to society than someone with a couple of kids who works full time!  The biggest stumbling block is society’s view on what constitutes meaning.  If earning shit loads of cash and popping out a couple of mini me’s is what makes a life successful then I’ve failed miserably.  If educating, advancing research, helping others, caring for the sick and elderly, looking after abandoned animals and sharing passion through art is what constitutes a meaningful life then I think I’ve done OK.

To pinch a recent quote from my friend and fellow blogger over at Musings of a Dysautonomiac

It is here that we encounter the central theme of existentialism: to live is to suffer, to survive is to find meaning in the suffering.” – Viktor Frankl