Tag Archives: hypermobility

Weekly roundup

Sorry there has been no blog post this week – I simply didn’t have the time, and more importantly, the energy.

Tuesday I drove my Dad 90 miles to the other side of the country for his pre-op assessment.  He has spinal stenosis due to a bulging disc and needs decompression surgery.  Eighteen months ago he was still walking 6 miles up the mountains every week but now needs a wheelchair outdoors and has to use a stairlift to get up the stairs to his apartment.  His deterioration has been swift and scary and he’s desperate for surgery, for which he’s now been waiting nearly 4 months.  At the assessment we met the Surgeon who will be carrying out my Dad’s operation and he dropped a bit of a bombshell.  He said that although my Dad’s MRI scan showed the narrowing in his spinal canal it isn’t bad enough to be giving my Dad such severe symptoms and he thinks something else may be going on further up his spine.  So while we wait for the surgery to take place I’ll need to take him back to the Hospital a further two times, once for an MRI of his upper back and neck and once for some nerve conduction tests.  While it’s bloody annoying to have to do another couple of 180 mile round trips I’m glad that the Surgeon is being thorough.  My Dad has MGUS (monoclonal gammopathy of undetermined significance) which showed up unexpectedly in his bloodwork a year ago and none of the doctors I’ve spoken to so far have wanted to know.  However, MGUS can cause peripheral neuropathy and we need to know whether that is contributing to his leg weakness.  He also has cramping/spasming hands to the point where he can’t even pick a cup up and again this has been ignored by the doctors we’ve seen so far.  But it’s not normal for heaven’s sake and I’m chuffed the Surgeon agreed and has decided to take a look at his neck at long last.

The Clinic was running 2 hours late, so we ended up having quite a long day.  We set off at 9.15am and finally got home at 3.15pm.  I was knackered.  However, that night I was teaching the beginner’s photography class so had to pull my leaden body and foggy brain together.  I managed to get through it but was so exhausted it was like an outer body experience and I can’t remember a thing about the evening or what I said!

I coped really well all things considered but the next day I woke to find I was crippled with pain and could barely walk.  I blamed it on all the driving and having to push my Dad’s wheelchair…………until my period arrived out of the blue :-/  My surging hormones seem to be affecting my ligaments massively as I transition into Menopause and even though my period has now finished my back and legs are still stupidly painful.  The constant shooting nerve pain right down to my ankles is particularly wearing and I can’t get comfortable enough to sleep.  I’m so over it I can’t even tell you and I had to miss Wednesday’s Camera Club as I simply couldn’t sit upright.

Thursday night I’d agreed to go to a Club event.  It was a buffet to thank those of us who had judged a recent International Photography Salon and I’d really been looking forward to it as I have no social life and rarely get to mix with other people.  Sod’s law that it coincided with having to take my Dad to the Hospital and my unexpected period, and I woke that morning feeling like road kill.  I lay in bed and cried at the unfairness of it all before eventually pulling my sorry arse together and just getting on with it.  I rested until late afternoon, had a bath, took some ibuprofen, slapped on my TENS machine and my SI belt and off I toddled.  I’m glad I forced myself to go because I had a smashing night but I’d be lying if I said I wasn’t still suffering for it three days on.

I’ve lost my reading glasses.  The case is on my over-the-bed table as it always is but the specs are nowhere to be found.  I have no clue where they could be and have searched every inch of my little house to no avail.  £160 of spectacles seem to have disappeared into the ether just before Christmas when I’m already broke.  FFS!

Speaking of Christmas, it’s five weeks away and I haven’t given it a second’s thought.  Arrrghhhh, panic!!

Today I am going out for lunch with my bestie 🙂  I don’t know why but this week I’ve felt lonely and a bit sorry for myself so I’m looking forward to seeing her, plus there’s the added bonus of someone else making me a meal for a change which is my idea of heaven.   But first I have to get my thermals on and take the hound out.  It’s a stunning, crisp late Autumn morning here in the lake district but it’s bollock freezing cold and I’m definitely going to need a hot water bottle stuffed under my jumper to keep me warm on my scooter.  It makes me look as fat as a whale but I’ve gained so much weight in the last 12 months I actually am as fat as a huge blubbery whale, so that’s alright then 😉





Weekly roundup

I seriously need to be resting now.  I’m exhausted and unwell.  But my life is so busy it’s not happening and I have no idea what the consequences are going to be.

There are only six Mondays to go til Christmas and I have not given it a second’s thought.  I haven’t had the time or energy, but I’d better start getting my backside in gear or I’m scuppered.

Following on from my car accident, on Monday I had to take my car in to the local body shop for an estimate and they told me it could be 3 weeks before they can repair it.  FFS.

I went to take Bertie out on my scooter on Tuesday…………only to discover that I had a totally flat back tyre 😦  So I had to ask my neighbour to help me jack the scooter up on bricks and get the tyre off so that I could take it into town to be repaired.  More sodding expense.

I told you in my last post about the lady at my Club who had a pop at me on Wednesday night.  I’d had a really enjoyable evening until then but went home feeling upset and angry.  She seems determined to spoil my enjoyment of the Club and I’m not sure what to do about the little bitch.

Thursday I discovered a wealthy, influential landowner is trying to persuade my local authority to build a dual carriageway of one of the busiest rounds in the country on the edge of my little hamlet.  It strikes fear in my heart and I’ve been busy writing to my Parish Council and my local Councillor to find out what stage the proposal is at and if there’s genuinely any chance it could happen.  I live here because I’m in bed for 17 hours a day and my poorly brain needs peace and quiet – I’d be forced to sell up if this road went ahead and I LOVE where I live 😦

We finally heard from the Hospital about my Dad’s spinal surgery, so on Tuesday I’ll be taking him on a 180 mile journey for a pre-op assessment.  Please God that means his surgery is imminent.

Yesterday I did a paid photography job.  I don’t usually agree to do paid work because it’s way too stressful – I have to be well on the day and there’s huge pressure to make a great job – but I’m so skint with Christmas looming and my car accident that I had no choice.  Thankfully it went well and I hope they’re happy with the photos which are Christmas presents for their parents!  My brain today, however, feels like it’s been fried, my throat is killing me and I feel very fluey and MEish :-/

This coming week is absolutely and utterly nuts and if I feel ill now I’m going to be in a coma by Friday.

Well, this is a cheerful post isn’t it?!  I’m not miserable in any way, just concerned that I’m doing too much and feeling more and more unwell.  After this week is out of the way I MUST make it a priority to rest, though I’ve been saying that for over a month now and life has a habit of putting the kibosh on my plans!


Weekly roundup

Blimey, I’ve had a bit of a week and don’t quite know where to start!   On the plus side my recent really bad pain flare, including all the violent, stinging nerve pain, has disappeared as quickly as it arrived but on the negative side I am on day 5 of a migraine and am just about demented.  I’m also still waking every sodding morning at 4.15am, the lack of sleep is now getting old and I am starting to get proper grumpy.  But other than that I’m tickety boo and my energy levels are remarkably good 🙂

My Dad’s heart results finally came back and all is fine, which is great but we are still in the dark as to what is causing his neck pressure, muzzy heads, dizzy/vomiting episodes, fatigue and severe bi-lateral hand spasms so I took him to see his GP.  She thinks the episodes are migraine and has given him some tryptans – what tosh.  My Dad is 79 and has never had a headache in his entire life.  These episodes don’t contain head pain and no-one starts with severe migraine out of the blue aged nearly 80.  She said the hand spasms, which are so bad my Dad can’t pick a cup up, are just “cramp”.  WTF?!  No-one gets cramp in their hands that badly and cramp doesn’t appear bi-laterally.  He needs a neck scan, having had a large lipoma taken off his neck several years ago but told it was embedded in his spinal cord and they couldn’t get it all out – I’m fairly sure it’s been growing all this time and is now pressing on nerves.  I honestly wonder what planet GPs are on.

Thursday was a BIG day.  I discovered I am one of only 60 photographers in the entire country to have been selected by the Photographic Alliance of Great Britain to have one of my photos exhibited in a London gallery.  O-M-flippin-G!!!  So I have applied for a disabled person’s railcard and will be making the 300 mile journey down to the Big Smoke in December to the opening.  How totally exciting!  It’s just a shame that out of the 50 members of my club only 6 congratulated me.  People want you to do well, just not too well.  Jealousy is a horrible emotion.

I was still high as a kite on Friday from the news and had a lovely lunch with my 3 old codger friends from the Club who were all delighted for me.  When I came home I backed up my drive to swing into my garage………..and hit a fucking car which was illegally parked.  As I’ve mentioned before, there is a business at the end of my drive and his customers continually park in my private driveway, partly blocking my garage.  I’ve been telling him for three years they are not allowed to park in my drive but he does nothing to stop them.  It makes me LIVID, particularly as they get grumpy with me when I ask them to move their sodding vehicle!  So it’s costing me my excess of £150 to get the damage to my car sorted and of course my premium next year will rocket.  If the stupid woman hadn’t been blocking my garage in the first place it would never have happened.

I honestly feel I am never allowed to be happy.  The second something nice happens in my life you can guarantee something shit will follow.  It’s really wearing.

On that cheerful note I am off to risk taking some ibuprofen as my right eye feels like it’s bulging out of its socket and I currently feel too nauseous to eat breakfast.  Bertie’s back is also sore this morning so he’s had to have extra paracetomol.  What a pair we are, but I still think Bert gets the better deal – every morning he lies blissfully on his back and gets his tummy rubbed, but when I ask him to massage my stiff neck he just rolls over and goes to sleep! 😉


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 🙂




Weekly roundup

Apologies for the fact there was no blog post this week.  I sat down to write one on a couple of occasions and found I just didn’t have much to say.  After 5 years of blogging twice a week sometimes I don’t have anything new to add that hasn’t already been said and this week felt like one of those times.  I’m sure I’ll be back to my chatty self soon.

I’m feeling very emotional this morning.  I had a lovely day yesterday, but it was a big day and whenever I’ve done too much and am over-tired my emotions take on a life of their own (called emotional lability).  I woke up obsessing over something I said to a family member nearly 3 years ago and it’s making me feel sick to the pit of my stomach.  My rational brain tells me to stop being bloody ridiculous, it’s done and over with and there’s nothing I can do about it now but my overly emotional emotions won’t give it up and I know I’m going to spend the day wanting to crawl out of my skin.

The reason I’m so tired is that I went through to the city yesterday and not only is the 60 mile round drive tiring I find all the hustle and bustle exhausting.  I thought I’d do a bit of shopping for an hour but I wandered around like a lost puppy gazing at all the bright shiny things and felt totally overwhelmed.  As a 51 year old with a saggy arse and ever-expanding waistline who lives in the middle of nowhere and has been largely housebound for a quarter of a century fashion means nothing to me.  I gazed at all the boots with heels on like they were alien spacecraft (my back barely allows me to wear flat shoes let alone 2″ platforms :-/ ) and the clothes looked either uncomfortable or cold (why do men get to wear thick, fishermen rib, roll neck sweaters down to their butts and women have to wear see-through jumpers with 3/4 sleeves and scooped necklines which barely reach their waist-band in the middle of winter?!).  The price of everything also made my eyes water and I just know I’m going to be one of those women who spend the rest of their natural days in leggings and fleeces from Matalan 😉 .  At 5.30pm I’d arranged to meet my bestie for dinner and really enjoyed it.  She was on great form and we had a lovely meal, followed by a show featuring Robin Ince from Radio 4.

I have a photo competition coming up with the theme of ‘town or city-scapes’.  I am not a landscape photographer and despite the looming deadline had not got one picture to enter, so I took my camera with me and got some shots of the city at night on the way back to the car – they’re absolutely rubbish but I least I have something to enter.

Wednesday was also a big day for me as I’d agreed to judge my first ever competition at my Camera Club.  I’d been given the images before-hand so I could award them all marks but it was still daunting to have to stand in front of 40 people and critique each image, trying not to be negative but still giving feedback on how each picture could be improved.  I think I did OK though and got some nice comments afterwards 🙂  This Wednesday is an even bigger day, as I am guest speaker at a Scottish Camera club and have to talk for nearly 2 hours in front of a room full of complete strangers – gulp!

I don’t think my emotions or energy are being helped by my schizophrenic hormones.  Last month I had a period on day 12 of my cycle and this month, despite feeling like it’s going to start any second, I am currently on day 36 of my cycle with no show from Aunt Flo.  I am waking every sodding night at 4.30am and not getting back to sleep.  Even last night, when I didn’t get to bed til nearly midnight, I was still wide awake at 4am.  FFS.  I have also had another 2 brutal migraines this week which weren’t helped by the fact the road outside my house is being resurfaced and men with drills spent 8 hours one day taking up the old tarmac.  I can’t tell you how ready I am for this menopause bollocks to be over.

A couple of weeks ago my friends kids came to model for me and I’ve ummed and ahhhd over what to do with the resulting images.  I still haven’t decided how to edit the older girls’ picture but finally came up with an idea for the younger one’s which I’m happy with – I’m calling it Evacuee.

I’ve had an incredibly busy summer and have been preparing for my talk this week for months (I’m showcasing nearly 90 pictures!), so even though I’m excited to do it I’ll also be glad when it’s over and I can have a well earned rest.  I feel I’ve been neglecting myself recently and am in imminent danger of a relapse so I’m planning on having a quiet run up to Christmas to try and claw back some energy – famous last words!



Weekly roundup

This week has been a bit dull and hard going if I’m honest.  My hormones are still making themselves heard, my back, hips and legs are painful and I’m fed up of not getting a decent night’s sleep and consequently spending every day knackered.

The highlight of the week was Tuesday.  As you know, I’d judged my first international photography Salon recently and on Tuesday night the judges gathered together to choose the medal winners.  I enjoyed looking through all the top ranked pictures and being amongst people for a natter, even if it did take 3½ hours by which time I was almost comatose.

Camera Club was cancelled on Wednesday due to “adverse weather conditions”.  I’ve never heard such tosh in all my life.  I received the message at 2.30pm while I was out walking Bertie.  It was bone dry and so warm I didn’t even have a jacket on!  Yes it was a bit breezy as we caught the tail end of some storm or other, but this is Cumbria in Autumn – if we cancelled stuff every time it was a bit windy nothing would ever get done.  If southerners can’t hack living up north they should go back down south is my conclusion.  I was supposed to be teaching software that night and had spent 4 hours preparing, so I was well pissed.  My time and energy are so precious to me I can’t afford to waste them.  The evening wasn’t totally ruined, however, as I received an SOS off a fellow Club member who was so fed up of staying in his house alone he asked if I’d meet him in the local pub for supper, and as I was also fed up of staying in the house alone I said yes (before you get the wrong idea he’s in his seventies so there is nothing romantic going on!).

Thursday I left one of the hob rings on full for over two hours and singed the wall behind.  It’s the third time in as many weeks I’ve left the cooker on and could have potentially burned the bloody house down.  As it is I’m going to have to repaint one entire wall of my kitchen because the paint has been on for several years and if I try to patch it it will look crap 😦  I swear my memory is so bad these days I’m worried I have dementia.

I was woken at 4am Friday morning with a brutal migraine.  They have been baaaad recently and I’ve had to resort to taking Ibuprofen, even though I have a mild reaction to it.  I know that one of these days the reaction will turn more severe and I’ll have to stop taking it but for now I’m putting up with the palpitations, nausea, muscle cramps and feeling weird in order to get rid of the god awful head pain which two days on still hasn’t totally gone.

I’ve been bored this weekend but not up to doing much.  In the end I decided that I wanted to try taking a fine art portrait, so I got into my wedding dress in the spare bedroom and this was the result.  It needs more work because I’ve put too much texture over parts of the skin but it’s turned out OK I guess for a first attempt.

So, that’s been my week.  Apologies this post is as dull as dishwater but then not much has happened.  I’ll try harder for a bit more excitement next week, like a Euromillions jackpot win or bumping into Hugh Jackman in Sainsburys but don’t hold your breath 😉

Weekly roundup

How is it possible for time to both drag and fly by?!  That’s how I feel the last several days have gone – the evenings have often seemed interminable while the days have zipped by at an alarming rate of knots.

I had my 51st birthday this week, which passed pleasantly enough even if most of the day was spent on my tod as usual.  I did, however, go out for lunch with my parents but I paid for my little jaunt by way of a migraine which started at about 9pm and by 2am was at warp ten.  FFS it was my birthday – you’d think my body would take just that one goddamn day off.

I wasn’t particularly looking forward to Camera Club on Weds night because my lovely friend Linda is no longer there to sit with and one of the members was spending the evening showing us photos of his holiday to Asia (not that I’m jealous in any way, having not left Cumbria since 1996), but to be fair I did actually have a slightly better time than anticipated and if nothing else it was nice to get out of the house even if my back did scream at me all night that it would rather be in bed.

Friday I was kept awake most of the night with yet another humdinger of a migraine which nearly drove me demented.  Needless to say the rest of the day was a right off.  My hormones are clearly playing silly buggers which is why I’ve been so headachy and, for the most part, I’ve also been grumpy and exhausted plus I have hives on my arse which shows my histamine levels are up.  Yay.

Saturday, despite still feeling a bit rubbish, I decided to try a photo out I’d had in my mind for a while so I palmed Bertie off onto my friend in the village, made my way through a field full of scary Bullocks, changed into my ballgown, wig and wellies hoping no-one saw me and called the Police, then spent half an hour inside a tree (being bendy has to have some advantages).  I’m quite chuffed with the result, which I’m calling From Little Acorns Great Oaks Grow, and have decided to use it as the last picture for my Distinction in November 🙂

Speaking of Distinctions, I thought my images had been accepted into enough international Salons for me to apply for my first FIAP (international) award but I discovered this morning that I’d read the rules wrong and still have another 2 Salons to go *sigh*.  I know I’ll do it, but it’s all so fucking expensive I’ll be eating baked beans from now until Christmas (at least I would if my mast cells would let me 😉 ).

This morning I decided to tackle an overgrown ivy on the wall of my little front garden with some shears.  I sometimes forget I have hEDS and my wrists are fucked.  Remind me to never do this again!