Category Archives: Myalgic Encephalomyelitis

Weekly roundup

We cruise along in life blissfully ignorant of the fact that on any given day, totally without warning, our world could come crashing down.  That’s what has happened to my sister-in-law this week when she was diagnosed with breast cancer at the age of 49.  Of course, it would be the s-i-l that helps me with my parents, has a full-time job as a home care manager and still has a child living at home, and not my other s-i-l who does absolutely bugger all – it’s the unfairness of it that makes your blood boil.

As you all know, I’ve been trying for over 2 years now to find a reason for my Dad’s severe sensorimotor polyneuropathy.  The neurologist at the RVI in Newcastle, as a last resort in July 2019, ordered a lip biopsy to check for Sjogren’s Syndrome (the gold standard test for SS) and sent the report through to my Dad’s GP.  The GP couldn’t make head nor tail of the histology report, but as the neurologist said in her letter that the result showed “mild inflammation” my Dad was referred to a Rheumatologist for further consultation.  We saw him in October, but he hadn’t been sent the histology report.  He ordered a load of further tests which all came back normal and we waited, and waited, for a follow on appointment.  In the last 3 months I’ve rung his secretary twice to ask what the hold up is and she just kept saying they hadn’t received the lip biopsy report, so I told her to bloody well chase it up.  Then last week my Dad gets a letter from the Rheumatologist to say he still hadn’t had a copy of the biopsy report, but as all the other tests were negative he was discharging my Dad from his Clinic.  WTF?!

The same day, I rang the RVI and it took less than 3 minutes for them to email me the biopsy report, so why the hell the Rheumy’s secretary couldn’t have done that is anyone’s guess.  And the report shows “focal lymphocytic sialadenitis; focus score = 1” in other words it is absolutely positive for Sjogren’s Syndrome, or possibly the blood cancer lymphoma which we already know my Dad has a marker for.  I am LIVID.

Livid that this was done 6 months ago, yet for some reason the neurologist has called the result “mild inflammation” when it’s nothing of the kind.  Livid that my GP didn’t bother to Google the result if she didn’t understand it, and realize it was positive for SS.  And livid that the Rheumatologist would discharge my Dad from Clinic without bothering to get hold of the biopsy report first.  These people get paid tens of thousands of pounds each year of my tax money to do their job – I shouldn’t have to be doing it for them.  Needless to say, I sent a very sarcastic letter to all 3 health care providers and requested an urgent appt to discuss.

My Mum’s been having some stomach issues lately, so on New Year’s Eve I sat for 2½ hours in the hospital waiting for her to have an endoscopy, which in the end had to be halted mid-way through as Mum couldn’t breathe due to her severe COPD.  She went back on Tuesday to have the test repeated, but this time they put her on oxygen and it was much better.  Thankfully nothing sinister was found, though there was a large area of inflammation which was biopsied and we’re now waiting to find out if she has h-pylori, which can cause ulcers and needs a course of antibiotics.

I’m so fed up of hospitals I can’t even tell you.

In amongst all of the above, I’ve been trying to sell my house and buy a knackered bungalow – more on that in my next post!


Weekly roundup

I’m going to apologise in advance for the next 6 months, when I doubt very much there will be any medical mid-week blog posts.  With everything going on move-wise, and after moving renovation-wise, I know for a fact I’m barely going to have the energy to eat let alone write fun or interesting articles (or miserable or boring ones come to that 😉 ).  I hope you’ll forgive me and stick it out until I am happily living in my forever home.

Speaking of which my cousin, who fortuitously happens to be a builder, went out for a look this week.  I gave him the plans for the renovations, he asked my budget, I told him and he burst into hysterical laughter.  “Not a chance!” were his exact words.   I appreciate my budget is tight, however I’m not building fucking Graceland and he’s just going to have to get it done for the money I have.  Or else he’s dead to me 😉  I am getting a second quote from a builder who has been renovating the house next door, so we’ll see whether blood really is thicker than water!

That was on Thursday and to be honest I came home massively deflated.  I’d been nothing but excited about the new house until then, but it suddenly dawned on me just how much work is involved and the thought actually gave me an anxiety attack.  Of course, that left me feeling as weak as a kitten, ridiculously brain fogged and horribly nauseous.  I only managed 3 hours sleep that night and was starting to wonder if I’d made a humongous mistake.

Saturday morning I woke early and immediately my stomach was in knots and I felt dreadful.   Got up for a pee……………….and I’d started my period 😮  Oh well, at least that explains why I’d been so anxious, nauseous and why my stomach felt like it had been karate kicked!  I’m still stressed, but it’s nothing like it was a few days ago so I’m putting much of my physical and emotional state this week down to my hormones,  I’d reached day 60 of my cycle so was gutted to, yet again, have a visit from Aunto Flo.  FFS is that bitch never going to leave?!!

Other than that I haven’t been up to much, though I did attend my camera club for the first time in about 2 months on Weds.  They’re a lovely bunch of people and I wish I currently had more time and energy to devote to all things photographic, but I don’t and that’s just the way it is for now.

I chased my Dad’s rheumatology follow-up appointment regarding his suspected Sjogren’s Syndrome only to be told the rheumy didn’t want to see him again, which means he doesn’t have Sjogren’s.  FFS.  Again.  So it looks like we’ll be back to neurology at the RVI where I know for a fact they’ll now class my Dad’s severe neuropathy as “idiopathic” – in other words they have no shagging clue what’s causing it and he will consequently receive zero treatment.  T’rific.  However, the good news is he drove the car again today, less than 6 weeks after his hip replacement and took Bertie on a little walk for the first time in 18 months!  He’s doing brilliantly for an 80 year old and I’m dead proud of him 🙂

Well, the land of nod is calling so I’ll love you and leave you.  I have to be at the house for 8.30am in the morning as my cousin the builder is bringing round a plumber to quote for putting new heating pipes in.  Crack of goddamn dawn – there’s no need for it!




Weekly Roundup

It is week 5 of my cold virus and, although my runny nose has finally dried up, I’m still coughing.  It’s making me grumpy and irritable and I tell it to fuck right off twenty times a day 😉

Despite my Mum’s endoscopy appointment being for 9am on New Year’s Eve we still waited a whole hour before she was called in for her pre-test checks and were there over 2 hours in total.  It isn’t physically possible to be running an entire hour late at 9 o’clock in the morning, so one can only assume the way the department is run leaves a lot to be desired.  I know when my Dad had his endoscopy it took 4½ hours, 3½ hours of which were spent sitting in the waiting room.  The upshot of Mum’s endoscopy was that it had to be halted mid-way through because of a drop in her oxygen levels (having half a lung and a humongous tube down your throat will do that to you), so we’ve got to go back and have it done again.  Oh joy.

Speaking of my Mum, we had a conversation in the car about menopausal hormones and how they can make you irritable.  “You were really nasty when you first started going through the menopause” she tells me, “I recognized it from when I went through it”.  Er, no, Mother.  I shouted at you because I was on the verge of a nervous breakdown because you are an alcoholic and were drunk every day by lunchtime, leaving me to run your life, my Dad’s life, your home, my home and my own life all the while suffering from 3 serious and disabling diseases!  I didn’t say that, though, because she was on her way for an endoscopy and I didn’t want to upset her.  This is the extent to which addicts are in denial.  They can’t see that their behaviour affects anyone but them and are unable to take responsibility for their situation.  I’m still seething about her comment a week later – pointless I know, but I’m only human.

I received the vet’s bill for Bertie’s tooth cleaning, blood test and dewclaw removal this week.  £400 ($523).  Arrggghhhh!  He wasn’t even in a day, let alone overnight.  And before anyone asks why he isn’t insured, he used to be.  I paid £19.50 a month until the insurers discovered he had a slipped disc and they demanded £179 a month instead.  Fucking robbers.

Things are starting to move with the house sale/purchase and I’ve received a ginormous wad of paperwork to fill in from my solicitor.  Several people have asked that I do pictures of the bungalow renovation, so I’ve set up a separate blog for that – I’ll let you know when I start posting!  I seem to be the only person excited about my house move – everyone else thinks I’m mental for taking on such a massive project, which is starting to get to me :-/  It’s happening, I’ve done my research, survey, costings and plans and it’s not like I haven’t done houses up before (admittedly not this level of renovation but still).  I’m not clueless or naive, so I wish they’d just get on board and be supportive.

My elderly, disabled friend who I called an ambulance for when he fell out of bed bought me a new hoover for Christmas 😮  He’s not short of a bob or three so £300 isn’t anything to him, but it’s a big deal to someone on my income and I’m incredibly grateful.  It’s a lightweight, cordless, stick one and doesn’t kill my back like my big, clunky Dyson – important as I’m still currently sans cleaner.  You know your life is a huge pit of excrement when you get excited by a hoover.

Well, I’d better get up and get my arse in gear.  I’m meeting my bestie for lunch today in the city, which I’m very much looking forward to, and am fairly sure it wouldn’t be acceptable to rock up in my jim jams and fluffy bedsocks with the hole in the heel 😀  But first I have to walk the mutt.  He knows the route with his eyes shut, so why he can’t just take himself off for a wander and leave me to have a lie-in is beyond me, the selfish article.


Christmas wishes

I am suffering one of the worst colds I’ve had in a decade and to add insult to injury have woken this morning with a migraine so don’t feel up to writing much, but I just wanted to wish you all a very happy Christmas.  I hope, whatever your level of health, you are able to find some way of enjoying the holidays and that Santa spoils you rotten.

With love from Jak & Bertie x

Weekly roundup

OMG I have the raging lergie and feel like the undead.  It feels so unfair – I don’t have the resources to be sick on top of being sick.  It started on Tuesday with one of the worst sore throats I think I’ve ever had.  Every time I lay down I felt like I was choking and my entire oesophagus felt inflamed.  I didn’t feel ill with it though – that came later.

Wednesday I woke up streaming.  Every time I moved my head my nose dripped and trust me when I say my nose isn’t exactly small 😉  I still didn’t feel poorly but, though I was off my food.

Thursday I woke and the streaming had stopped, but in its place was feeling like I’d been run over by a bus, which had backed up and run over me again just to make sure I was truly dead.  I had zero energy, my head pounded and every part of me ached.  I took my temperature which was normal, then spent the day drinking elderflower codial like a woman lost in a desert and consequently peeing like a race horse.

Friday I woke sounding like Donald Duck.  My throat was on fire and my neck was visibly swollen.  No ulcers though, or puss, so it isn’t tonsilitis – just a virulent virus which everyone I know has succumbed to.  My voice had almost totally gone and I ached from head to toe.  I only got 3 hours sleep that night because every time I lay down I either started coughing or felt like I was choking.  It didn’t help that I was woken at 2.15am by what sounded like someone tap dancing on my bedroom ceiling in hob nailed boots but which was probably just a little vole scuttling about.  It needs to eat the poison that’s up there quick smart and die!

Saturday my throat was worse than ever, which I didn’t think was physically possible, and my nose was back to streaming.  While writing the 4 paragraphs above I sneezed no less than 7 times and went through 5 aloe vera infused tissues.

I didn’t need the worst cold of the past decade this week, when I’ve had the biggest news in 15 years :-/  It’s difficult to get excited about my house move when my head if full of cotton wool, my eyelids feel like concrete blocks and I’m feeling utterly dreadful, though I am of course thrilled to bits 🙂

Last Saturday I received a request from a couple who wanted to view my house.  The man booked it and I didn’t recognize the name, so imagine my surprise when I opened the door to find a woman on my doorstep who used to be my cleaner!  They’d moved away to run a business which sadly didn’t work out and they were desperate to move back to my village because both her Mum and Sister live here.  They put in a good offer the same night.

I couldn’t formally accept though because I hadn’t had my offer accepted on the bungalow I wanted.  However, I was in a much stronger buying position now I had an offer on mine, so rang the Estate Agent at 9am Monday morning to place my best and final bid.  Despite being on the market for 7 months and mine being the only offer, the vendor had another viewing booked for Friday so made me wait until that had taken place and the viewers clearly weren’t interested in buying before he accepted.  So one way and another it’s been a stupendously stressful week and I’m sooooo relieved it’s all turned out OK, streaming nose, aching limbs and razor blade throat aside.

Right, I’m going to attempt to get dressed in order to pay a visit to my local farm shop where they make Jersey ice cream, which I’ve heard can be very soothing for firey throats.  Well, that’s going to be my excuse for binging on a 6 scoop tub anyhow and I’m sticking to it 😀





Weekly roundup

Tomorrow I find out whether the next chapter of my life begins………..or not.  It’s the biggest thing to happen to me in 16 years, so please send some positive vibes out into the Universe that it goes the way I hope.  I’ll do a post on the outcome when I know.

This week has been spent mainly helping my parents.  My Mum is chocka with cold which has inevitably gone to her chest (she has half a lung, emphysema and severe COPD).  She has emergency antibiotics at home so started them early, but they make her nauseous and give her the runs so she’s pretty miserable and feeling really unwell.  My ‘nice’ neighbours both have the same lergie, as does my dog walker, so it seems like a pretty virulent bug :-/

My Dad is doing OK after his hip operation and subsequent huge bleed and is managing to walk outdoors for short distances.  He had 34 staples taken out of his leg on Friday and the wound is healing well.  His leg is swelling badly every day though and since the staples came out he says he’s getting severe pins and needles, so if it’s no better tomorrow I’m going to ring the post-surgery helpline number at Hexham to see if that’s normal or not.

Bertie also had his stitches out on Friday following the amputation of his rear dewclaw.  Unfortunately there is little skin to cover the wound so it will take some time to scab over.  I did notice a bit of puss last night, so put some Germolene on and covered it with a dressing, which I’ll change twice a day for the next few days to see if I can get on top of the infection.  Not sure if you’re supposed to put Germolene on a dog, but I’ve been doing it for years and as long as you cover it so the dog can’t lick it off and poison itself it seems to be as effective on mutts as it is on humans!

Other than that I’ve been trying to keep on top of housework/cleaning/laundry.  I am running on empty now and have told my folks I’m having 10 days off over Christmas to recoup my energy (famous last words!).  Despite everything I am miraculously ready for Christmas though – cards are sent, presents are bought and wrapped and Boxing Day lunch at a hotel is booked (we don’t do Xmas day lunch, we’re all too ill).

I felt sick last night with a mixture of nerves and excitement so didn’t have any tea.  Consequently, I’m starving this morning and ready for an early breakfast.  Then I’ll take Bert out before meeting my disabled friend D for brunch in a local cafe.  Tomorrow I’m taking both my parents all the way to Sunderland for checks following their cataract operations, while also trying to juggle my life changing (or not) event.  It’s going to be a big week and by the end of it I could either be stupendously happy or stupendously depressed – watch this space.



It’s life, Jim, but not as we know it

I had brunch with my friend D recently.  He’s 75, widowed and severely disabled.  We were talking about porridge and how I sometimes just have a bowl of it for my tea in the evenings as I have my main cooked meal at lunchtime.
“What kind of porridge do you use?” D asks.
“Quaker Oats So Simple” I reply, “it takes 2 minutes in the microwave”.
He pulls a face.  “Eugh, I only like porridge done properly in a pan”.
I roll my eyes.

Does he not think that I’d prefer proper porridge made in a pan?  Pan porridge compared to microwave porridge is the difference between sirloin steak and cheap mince!  However, pan porridge takes 5 minutes during which time I actually have to stand up, then there’s a god-awful sticky pan to deal with afterwards, whereas I microwave my quick porridge in the bowl I eat it in and it’s ready in 120 seconds.  When you are sick and lacking energy choices have to be made.

We then talked about what else we eat in a day.  He tells me he goes out to a greasy spoon cafe most mornings and has a fry up, then eats nothing else for the rest of the day bar some toast or fruit in the evening.  He’s diabetic for heaven’s sake and has been found to be low in both iron and B12 which is probably one of the reasons he’s absolutely exhausted all the time.  So I arrange for a Wiltshire Farm Foods brochure to be delivered, which he doesn’t even bother looking at.  Someone else arranges a visit from the Meals on Wheels service.
“How did that go?” I ask.
” I discovered they’re made in a school kitchen!” he says, horrified.   Eugh!  I’m not having meals made in a school kitchen”.
Well eat nutritionally defunct food and feel like crap all the time then, I felt like saying.

We then get on to the subject of kitchens.   He’s recently moved house and needs a new kitchen installed.  I suggest a quality firm in town, who will send a rep to his house to measure up and I’ve already picked up all the brochures for him to choose the units, worktops, taps and tiles.
“Have you decided on the units?” I ask him.
“Yes, but I need to contact a company in Durham regarding the worktops.  We had these lovely granite ones with a copper streak in when we lived in Cheshire and I’d like those.  They have to make a template up in wood, then they carefully lay the worktop over that – they have to be soooo careful as it’s really delicate and can break while they’re fitting it.  I’m sure the rep will come over to advise and measure up.”
FFS.  His kitchen measures 8ft wide by 12ft long and he’s 75 fucking years old.  Why on earth would he make life hard for himself by getting some firm 90 odd miles away to come and do him a couple of bespoke counter-tops which will take months and cost a small fortune?!  The thing with him is, he still thinks he’s putting a Miele kitchen into a 30ft award winning barn conversion like at his old house.  But he’s not.  That life has gone now and he’s living alone in a small disabled-friendly bungalow.

I find this a lot with both old and sick people, my own parents included.  There is a stubborn refusal to adapt to changing circumstances, or any acceptance that our lives are no longer what they once were.  It’s particularly apparent at this time of year.  We see all the adverts for perfect Christmases on the telly and we want a part of it.  Before I got M.E. I used to make mince pies from scratch, invite all my friends over for dinner the week before Xmas, make a day of choosing a real tree, wrestling it into a bucket of water and decorating it from scratch (then spending an hour hoovering up rogue pine needles), buy everyone and his dog presents which I’d spend hours immaculately wrapping complete with matching ribbons, tags and bows, and send over 100 Christmas cards, not to mention making a couple of trips to the beauty salon to get my nails done and my hair coifed read to paint the town red.  Then I got sick and everything changed.  I can’t remember the last time I went to a beauty salon, I bought a fake pre-decorated pre-lit Xmas tree in the Boxing Day sales one year which I get out of the shed each December and simply plug in, I buy my mince pies from Booths, culled another 5 people off my Xmas card list this year which brings the numbers down now to 36, and not only do I invite no-one over for dinner I won’t have a single visitor to my home for the entire festive period.

For all the years I was bedridden I, of course, didn’t have the energy to have a Xmas tree of any description, and being as though no-one offered to put one up for me I used to hang a couple of baubles from a little palm plant in my bedroom.  I really enjoy Christmas and if that was the only way I could take part then so be it.

We have 2 choices when we get sick.  We either deny ourselves any kind of pleasure because it’s not perfect or what we’re used to, or we can make the most of what we’ve got, even if it’s not perfect or what we’re used to.   Twenty six years down the line do I still yearn for my old Christmas back?  Of course I do, but it won’t stop me from sitting in my pink rocking chair by the fire on Christmas Eve, with my Xmas tree lights twinkling, reading a favourite book and being grateful for what I have.

No-one understands more than me how hard it is to let go of the life we’ve dreamed about, but torturing yourself over things you can’t change is utterly pointless and killing yourself trying to do things the way you always have is a recipe for disaster – instead of enjoying Christmas you’ll just be in a sick, exhausted heap on the kitchen floor at best, or bedridden at worst.  Not celebrating at all isn’t the answer either.  If, when I first became ill, I’d said to myself “Christmas isn’t the way I want it to be so I’ll just not bother” I would have had 26 years of no Christmas at all – how depressing is that?!

I spent 10 years without Christmas.  I was too ill to get dressed, put up a tree, had no way of buying gifts (no internet then!) and even if I had I didn’t have the energy to wrap them and writing my cards took me 2 months, so even though the holidays these days aren’t what they were when I was well I cherish them.  I won’t see anyone.  I won’t have a ‘proper’ Christmas dinner (I’m not well enough to cook one and my parents certainly aren’t).  I hardly get any presents.  I’ll spend Xmas morning, and Xmas evening, alone and in the middle I’ll be with my alcoholic Mother.  Due to my HIT I can no longer eat mince pies, drink mulled wine or stuff my face with chocolates.  But I’ll still cherish the holidays.  I am alive, I have family, I have my lovely home and my lovely dog.  I have the energy to get dressed and walk with Bertie in the freezing winter cold, to watch telly or read a book.  I have a sparkly Christmas tree 🙂 And for that I am thankful.