Tag Archives: Mast Cell Activation Disorder

Weekly roundup

I have news about my Dad.  As regular readers will know, 2 years ago he started having weak legs and to cut a very long story short he went from walking miles up the fells every week to needing a wheelchair.  We discovered he had severe sensorimotor polyneuropathy but the Doctors couldn’t find a cause.  We were all baffled.  At our last meeting with the neurologist my Dad flippantly mentioned that he had a very dry mouth.  We’d told his GP but he’s on prostate medication, the side effect of which is a dry mouth, so it was put down to that however it can also be a symptom of the auto-immune disease Sjogren’s Syndrome.  SS, if left untreated, can cause neuropathy so in a last-ditch attempt the Neurologist ordered a lip biopsy which was done last month.  And low and behold it has come back positive for SS!  90% of SS patients are women (although it begs the question if men simply go undiagnosed) but men who get SS do tend to have a more severe form of the disease.  Not only can SS affect the nervous system it can also affect the brain, causing memory loss and confusion.  My Dad was diagnosed with mild dementia 2 years ago, so now I’m wondering how much of his cognitive symptoms could possibly be SS related.  We have been referred to a Rheumatologist at our local hospital and are just waiting for an appointment.  I’m so chuffed a reason for his neuropathy has been found – knowing what’s wrong with you is half the battle as we all know.

I was feet away from being blown to Kingdom Come this week.  Our summer so far in the UK has been a total washout bar one mini heatwave, and the north of England is suffering flooding.  We have had some wicked thunder storms and during one such event this week lightning struck the road right outside my house 😮  The bang was so loud I thought a bomb had gone off and I genuinely expected to look outside and see something on fire.  Luckily nothing big was hit, though mine and 3 of my neighbour’s wifi routers stopped working.  Mine eventually came back on, but my neighbours’ routers all blew so they are having to have them replaced.  One neighbour has also lost his Freeview TV signal so it must have blown the cable or something.   To add insult to injury, two hours later the UK was subject to a mass power outage and all the electric went off, just as we were all cooking our suppers.  It was not a good day.

In between all that, I have had my house valued.  I had no idea Estate Agents were going to charge nearly £3000 to sell my property, so am considering going with Purple Bricks instead and selling it independently.  I have a couple of questions I need answers to first, though, before I decide.  I went for a 2nd viewing on the bungalow and discovered it is more poorly than I’d originally realized.  The annexe I would use as a photography studio is coming away from the garage it’s built on to, there is damp on the lounge walls and ceiling, and the floors and ceilings in the main house are all sloping :-/ I think my next step is to pay for a structural survey before I can decide what level of offer to put forward, the money for which I might lose if I don’t end up purchasing the property.  Having to have the concrete floors dug up and re-laid is a massive, expensive, noisy and dirty job and I would probably have to move out for a week while it was being done, however it is purely because the house needs this level of work that I can even begin to afford it.

I am currently on day 40 of my cycle.  I have constant lower back ache and niggly period pains, plus god-awful heartburn (which I often get just before my period as my connective tissue become extra lax), but my period is awol.  For the first time I am also really noticing heat.  I’m not having hot flushes or sweating, I just feel boiling hot all over and despite the fact it’s currently 11C outside the thought of wearing anything other than shorts and a cami top is suffocating.  I let Bertie sleep under the duvet last night as I had the ceiling fan on full pelt – he lay there shivering but I was still on fire 😉  I also have a constant ravenous appetite, speaking of which I’m in need of some breakfast – I shall refrain from having ice cream being as though it’s only 7.30am but I can’t guarantee I’ll go the whole day without a scoop or two of salted caramel freshly made with milk from Jersey cows on the farm up the road.   I tell myself the salt is good for my low blood pressure and the protein and B12 in the milk is vital to my vegetarian diet.  Looking at it like that it’s positively a health food 😀

 

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Weekly roundup

This week has gone by in the blink of an eye.  I usually do my Roundup first thing on a Sunday morning, but because I’d actually forgotten today was Sunday (it feels like a Friday in my head for some reason!) it didn’t get done.  Not that I have anything exciting to tell you.

My lounge was decorated this week.  It hasn’t been done for 8 years and was looking a bit tired (I know how it feels 😉 ).  I wasn’t going to do it until Autumn, but if I do move I want my house looking top-notch for viewings, so decided to crack on and have it done now.  Obviously I haven’t been up a ladder painting the ceilings, but there has still been a lot to do.  All the furniture had to be moved, everything covered over, the curtains and poles etc. .taken down, all the skirting boards masking taped, the knobs taken off the cupboard doors……..  And then when it was done, everything had to be washed and put back.  I’m flamin’ well knackered and every joint I possess, and some I didn’t even know existed, hurts.  I’m getting the carpet shampooed on Tuesday and then it should be finished and the house can get back to normal, hurrahhhh!

Bertie hates any kind of turmoil and has been super clingy all week.  He always sleeps in his own bed because we both prefer it, but at midnight last night I could hear him pitter patting across the wooden floor and he tentatively jumped on to the duvet, then sidled up to me for a cuddle.  He just wanted his Mum, so I let him sleep with me even though he woke at 5am wanting his tummy rubbed.  It’s now 5.30 in the afternoon but feels like midnight!

I can’t believe it’s August already.  Where the HELL has this year gone?!  The next 3 months are ridiculously busy and I thought I had all the time in the world to plan everything and now I haven’t and I’m panicking!  It’s my Dad’s 80th birthday next week and I haven’t even got him a card yet.  We have 1 trip to Newcastle for the results of his Sjogren’s Test (they found something but we don’t know what until we see the Neurologist), 1 trip to Sunderland as he needs a cataract operation, then 1 trip to Hexham at the end of August to see about his hip replacement.  In between all that there are loads of little jobs which need doing in the house and I haven’t touched the garden in weeks.

In September it’s my birthday, and I absolutely have to start putting together the new talk I’m giving to a Scottish camera club in November even if I don’t manage to finish it.  I also need to decide which new club I’m joining as they start back around 8th.  Then there is my exhibition which absolutely needs to be done – 10 images printed off and mounted, plus packing crates and bubble wrap to organize – and I am also entering the Masters of Print again this year so need my 3 printed entries for that.

October is nuts.  I will be in London for my exhibition, am speaking at a Camera Club and attending a wedding all in the space of 2 weeks.  How the hell my health and energy are going to cope I have no clue.  And in amongst everything I am still hopeful about the bungalow I went to view so may need to put my house on the market.  No pressure then 😉  Seriously, I need my head read to have agreed to all this!  It just happened one thing at a time though and before I knew it………..Armageddon.  If you don’t hear from me in November it’s because I’m in a coma.

Right, I must get some supper because my tummy is rumbling.  Soup, a crusty bread roll and Say Yes To The Dress – there are worse ways to spend an evening.

 

 

 

Weekly roundup

I do my bit for other people and hope I am both a good friend and a good daughter.  People rely on me because I’m dependable, practical, knowledgeable about ‘stuff’ and will help someone out if I feasibly can.   Because I am at home all day, they assume they can call on me whenever they need to.  They also assume I am free to go out to lunch, off on days out and generally have so much time on my hands I am sitting by the phone just waiting for them to call.  They tend to forget that I am sick and live alone with no-one to help me.  I spend a minimum of 17 hours of every day in bed so only have 7 usable hours each day in which to fit my entire life, I have severe energy restrictions and I struggle just to get dressed.

I do try to set boundaries, but enforcing them can be just as exhausting as caving in.  An elderly, sick friend is currently moving house and I have spent whole days helping him.  On top of that he goes to a cafe every Sunday morning and expects me to meet him for brunch, even though I might already have had lunch with him one day in the week.  He became so demanding this week that I had to remind him of my situation and that in the past month I’d actually spent more time with him than my own parents.  In addition, I had not had one single day to myself, where I sat in the garden with a book, for an entire YEAR.

I try to have 3 ‘holidays’ each year: Easter, my birthday in September and Christmas.  I never go anywhere as I can’t afford to plus there’s no-one to have the dog, but I am supposed to spend the time lounging around doing absolutely nothing, just like I would if I were on the beach in Greece.   It never fucking works.  I missed my Easter holiday this year because I had a virus, so I told my parents I was having a week off this week as the weather was due to be lovely.  I was so looking forward to just lying on my sunbed and snoozing for days.  It didn’t happen.

Monday I had to go into town as the battery in my watch died and Bertie’s repeat prescription needed picking up, so I called in to see my parents.  My Mum’s doorbell needing fixing (vital and couldn’t be left), a birthday present needed wrapping for their sponsor child in India (there was a deadline) and she wanted me to order some cropped trousers for her as she’d put on weight and none of her summer clothes fitted and being as though we were expecting 38C temperatures and if she’s hot her breathing gets worse I felt like I had to.

Tuesday I did manage some ‘me’ time, but it was physically demanding as it involved being down by the river to take some photos.  I was quite pleased with the results, though, as I’d wanted to capture a gull fishing for at least 3 years!


Wednesday I went to view the bungalow in the morning, then my cleaner was here in the afternoon and I have to tidy up before she arrives because the house often looks like I’ve been burgled.

Thursday I have my groceries delivered and they needed to be put away.  Then we had wicked thunder storms and torrential rain, so I was forced to lie in bed watching repeats of Escape To The Country.   Lightening hit near my parents’ house and their landline stopped working, so I had to go in and work out if it was their phone (in which case they needed a new one) or the line (in which case they needed an engineer).  It turned out the micro filter had blown so they needed a new one of those.

Friday was the only day I managed to sit in the garden, because on Saturday it peed down.  And of course every single afternoon, plus 3 mornings, I have to take Bertie out because his bladder doesn’t take a week off.  And I still have to make meals, and stack the dishwasher, and put the recycling out…………

Needless to say it hasn’t felt much like a holiday.  It never does.  I am just as knackered as I was at the start of the week and I genuinely don’t know what the answer is.

 

Weekly roundup

I can come across as blunt.  I hope I’m not rude (well, unless the person I’m speaking to has been rude to me, then the gloves are off), but I can be blunt.  It’s a cultural thing and not meant to be offensive.  I live surrounded by farmers who don’t even know the words tact and diplomacy exist.  They call a spade a spade and if you don’t like it you shouldn’t speak to them.   Northerners are lovely people but they are, on the whole, straight shooters.  We also swear.  A lot.  It’s just part of our every day language and I know the hoards of southerners who retire here, buying up all our houses cos they’re cheap compared to London prices and leaving us locals with no-where to live, find us brash.  “Bugger off back down south then” is what I say to that, which my friends would find hilarious because they get me, and southerners would find offensive because they don’t.  I tell this tale because I had lunch with my best mate on Friday.  I was excited to show her the photo I’d taken of my posh frock from China (more on that later) and produce it with a triumphant flourish.
“Yeah” her nose curls up in distaste, “I don’t like it” she tells me.
I’m gutted, cos I love it.  “Why, what’s wrong with it?!”
“The arches look like lumps of rock, there’s no perspective, you look like a modern woman dressed up and plonked in a 14th-century Priory, the lighting is wrong and you’re not believable, you look cut out and stuck in.”  She then catches herself and says “sorry!  The butterflies are nice.”
I couldn’t help but laugh.  She’s speaking to me, her bestie, so can totally be herself but I get the worry that she thinks I’m offended because she has been honest and not pulled any punches.  We constantly have to worry about how we come across to people because we forget that not everyone is British, northern, sarcastic and blunt like us.  I tell her to fuck off and we get on with our lunch.

As I mentioned in my last post, I’ve spent the entire week with a migraine.  It finally disappeared on Saturday, only to return in the early hours of Sunday morning, waking me from sleep.  Parts of my neck, spine and shoulder are really, really sore so I’m wondering if I’ve torn/sprained/strained something and it’s that causing such a prolonged migraine, or whether it’s the muscle spasms from the prolonged migraine that’s causing the spine and shoulder pain.  Whatever, I am so over it I can’t even tell you.

Despite my banging noggin and queasy stomach, my Mum had an appointment at the Sunderland Eye Infirmary on Thursday, a 3 hour round trip away.  Driving with a migraine is not for the faint-hearted and by the time we got to Scotch Corner I could barely see and was on the verge of vomiting.   To add insult to injury, Sunderland had had torrential rain, we had to drive through flash floods not knowing where we were going, and we’d forgotten Mum’s wheelchair.  All in all it was not a fun day but I managed it without crashing the car, a bonus considering where my head was at.

As I mentioned above, my posh frock arrived from China this week and it is stunning, if slightly challenging to wear.  I bought a 6 hoop underskirt to go underneath, not thinking of the logistics of getting through the narrow doorways of my cottage which meant I spent 10 minutes trying to leave the bedroom, but eventually I managed to get this picture which I’m calling The Butterfly Effect.  I love dressing up.  I spend my entire life in jeans and pyjamas, so to put on a long dress and flounce around like a princess is fabulous 😉

Well, I can hear Bertie pottering around downstairs so I’d better get dressed and take him out even though I feel like crap and it’s the last thing on earth I want to do.  Pray for me that this sodding head pain goes soon.

Weekly roundup

I had every intention of writing a fun, informative post on some wildly exciting theme this week but life had other plans.  I’m currently contemplating redecorating my lounge and I would love a new sofa.  I bought the one I have now 15 years ago because it was practical – it’s a recliner for my orthostatic intolerance, it has high backs to support my neck and it’s dark coloured wipeable leather for the world’s muckiest dog – it’s also ugly as sin and cold to sit on.   Just for once I want a pretty sofa and have my eye on a velvet corner unit, however if I’m going to spend a massive amount of cash on a piece of furniture it has to be just right and I’m struggling to find exactly what I want.  So on Tuesday I decided to trail miles to Gateshead to the Sofa Workshop to see if they could make me one up.

However, I knew I’d get back late and be totally zonked so at 7.30am I thought I’d prepare the veg for my dinner so it was ready to come home to.  Big mistake.  Huge.  No-one should be in charge of sharp objects when they haven’t eaten breakfast yet and are still half asleep.  You know what’s coming.  Yes, my friends, the knife slipped and I tried to chop my thumb off.  Ouch!  (only I didn’t say that – I said words that began with F and B 😉 ).  There was blood everywhere and I nearly fainted because I hadn’t eaten for 13 hours, however I finally got my hand wrapped in a damp dishcloth, managed to make and eat breakfast and get dressed, waited for my dog walker to arrive so that she could have the mutt and drove the 7 miles to A&E one handed where I ended up having 6 steri strips put on.  As I have hEDS and my skin gapes like a fish when it’s cut I thought I might need stitches and to be fair looking at it 6 days on I think I should have had stiches because it hasn’t knitted together well and the wound is all lumpy, but it is what it is.    Taking the steri strips off yesterday was a sod, as I had to rip the caked on bloody scabs off too – yowza.

So all the things I had planned for this week went out the window as life one handed is tricky.  Having said all that, later that morning I still drove all the way to Gateshead,  light headed and with my hand on fire, to look at sofas and was gutted when even they didn’t have what I was looking for!

As if all that weren’t enough, I was out with Bertie for his afternoon jollies on Friday when all of a sudden he sat down and started licking his back end.  When he stood up again his lovely tail, which proudly curles over his back, was limp and hanging like a dead weight and he was obviously in pain and refusing to move.   He already has a severely herniated disc right at the base of his back/top of his tail so any problem involving his back end makes me panic!   His legs seemed fine though, so I wondered if he’d been stung by a bee or something.  I managed to get him home and gave him some paracetomol but it didn’t help and he was in so much pain he couldn’t sit, stand or lie, so we ended up at the vets who was as flummoxed as I was.  She gave him some Tramadol and said to see how he was the next morning, but even the Tramadol didn’t stop the pain and by 6pm he was still unable to sit or lie down.  So I rang the vet back and we added 200mg of Gabapentin (he’s already on a low dose of Gabapentin for his spinal problem).  That did the trick and he finally managed to get some sleep.  Thankfully on Saturday morning he could move his tail, if not curl it, and the pain was much improved so I’m now wondering if it was a bite from a horse fly into the joint – they’re evil little fuckers and having been bitten by one myself I can safely say it’s agony.

So my week has been a bit draining, both physically and emotionally.  I love my dog so much the thought of anything happening to him turns my insides to ice.

There has been good news too though, yet again from my photography.  Each year, our regionial wildlife charity puts together a Calendar to raise funds and I have had this image of Swans chosen for the February entry 🙂  The other exciting thing to happen this week is that I bought a gorgeous red and gold hooped gown in a flash sale to use for a photo, so look out for the resulting image in next week’s roundup.

 

Weekly roundup

Today, I feel like I’ve been hit by a bus.  I woke up tired, it’s progressed as the day has worn on and by 3.30pm I had to crawl into bed to have a sleep, from which I woke feeling like I’d been given anaesthetic.  It’s either my hormones (I seem to be having many more of these types of days than usual this year), I’m in the prodrome phase of a migraine or its the weather which has suddenly gone from gorgeous to overcast, cold and showery.

The contrast with Friday and Saturday is staggering.  The sun finally decided to shine for the first time this summer, it was a balmy 25C and I felt fantastic.  I usually do on sunny days between about 18-26C and I have no clue why.  I am energized, my pain levels receed, I sleep well and my brain is clearer.   Not for the first time I wish I lived somewhere with a better climate.  You can tell I was feeling good, because I tackled DIY!  The dimmer switch had stopped working in my lounge and needed replacing – Handy Andy eat your heart out 😉

After my struggle to fit the door on my new fridge/freezer the other way round, I’m loving it.  My old fridge had been too cold for several months and I’d forgotten what it was like to not have slush-puppy smoothies and icicle covered fruit.  My Mum has also been credited for the money stolen off her by the online shop, which has since closed – not sure if that was the doing of the company, Trading Standards or the fraud squad!

Both my closest friends have been away on their holidays this week and I, as usual, am going nowhere.  Bizarrely they’ve both gone to Wales and I think a touch of the green eyed monster kicked in when I secretly hoped it rained (my bestie will probably read that and piss herself laughing).  So as not to feel too left out, I decided to take myself off for the day to a local nature reserve to photograph dragonflies.  The sun was shining, there were only 2 other people there (both photographers) and I was in my element.  Being amongst peaceful nature does something to my soul and I came away absolutely buzzing 🙂  I also ticked something off my bucket list – a picture of mating Dragonflies! (well, actually, they’re Damselflies but it doesn’t sound as good 😉 ).  Click on the photo for a closer look – their faces are so cute!

My top news of the week, however, is that I have been awarded yet another photographic distinction, this time from the Photographic Society of America (PSA).   So I am: DPAGB, AFIAP, QPSA – there are now more letters after my name than is in it! 😀  Lord knows when I’ll ever use them – it’s not like I’m putting all that on the bottom of a letter, not that anyone writes letters anymore.  I have literally just found out I’ve been awarded QPSA as I was writing this post, so I’m now off to ring my folks and tell them 🙂

Weekly roundup

Ten days ago, my period arrived out of the blue and I have felt absolutely rubbish ever since.  My brain is super foggy, I feel constantly disorientated, every joint hurts, my back has kept me awake at night and my energy has totally done a bunk.  Yay.

I’ve also felt emotionally quite fragile, so I still haven’t spoken to my GP regarding the cancelled MCAS appointment.  Isn’t it dreadful that you have to psych yourself up to speak to a professional whose job it is to help you?  Don’t get me wrong I like my GP and she’s very helpful, but it just feels overwhelming atm.

After threatening Domestic & General with the Financial Ombudsman they agreed that under the terms of my policy I was entitled to a replacement fridge/freezer which arrived on Tuesday.  Hurrahhh, I no longer have frozen milk and can eat a melon without breaking my teeth 😉  However, the door opened the wrong way so I had to switch it over.  There were no written instructions, just pictures which indicated that I had to drill several holes in the casing of my new appliance – say what?!  For this I would need a 3mm metal drill bit, like most people simply have these specialist pilot bits lurking in their shed!  Actually, I did have a 3mm metal drill bit lurking in my shed but that’s because I’m weird, so I had to lean a nearly 2m tall fridge/freezer against my kitchen windowsill, get underneath to take the hinge off, drill new holes under the fridge and switch the hinge over.  Only the hinge didn’t fit.  Half a sweaty, frustrating hour later I discovered, quite by chance, that a left hand hinge had been taped to the inside of the salad bin in the fridge – it would have been nice to have been told that in the instructions.  Honestly, who makes a customer start drilling holes in their new appliance?!!!

Speaking of complaining about businesses, I’ve had to report an online trader to the police this week for fraud!  My parents use a particular brand of denture cleanser that they really like but have been struggling to get it from their usual suppliers in town, so I found some online at a website called Megadepot.  Placed the order and 3 weeks later had not received the goods.  It was only then that I researched the company and realized they were taking all their customers money and simply not sending them their order!  So I’ve had to initiate a chargeback through my bank and report them to Action Fraud and Trading Standards.

The sun made a brief appearance this week.  I wore a t-shirt with 3/4 length sleeves for my half hour walk with Bertie and every biting insect in a 10 mile radius flocked to my newly exposed skin and feasted – the little fuckers.

Today, I am taking my Mum through to the city as she wants to look for an outfit for a wedding we’re going to in the Autumn.  I hate clothes shopping, and she hates clothes shopping, so it’s looking like a fun afternoon.

Reading this post back, I’m aware that I have officially become a grumpy old git.  It was bound to happen sooner or later, but I had thought I might at least be in my seventies rather than just turned 50.  I shall try harder in future posts to be more cheerful but can’t make any promises 😉