Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

The Eagle eyed amongst you will have noticed that my Roundup post is a tad late because I’ve had such a busy week this is the first time I’ve had the chance to sit and write a post.

Monday didn’t start off well.  I go into town to help my parents and as I’m sauntering along to the front door of Sainsburys to get them a bit of shopping I see my lovely friend Linda from my Camera Club.  She waves and I think to myself “ahhh that’s nice, bumping into Linda” and then my heart suddenly drops like a stone.  Shit!  SHIT!!  I’d totally forgotten I’d actually arranged to meet Linda outside the door of Sainsburys so that we could go to a cafe for lunch together.  I was 20 minutes late, she’d been trying to ring me but I’d left my phone at home and she was worried sick I’d been taken ill or collapsed somewhere.  I was in my wellies and had Bertie in the car, so I had to make a mad dash to my Mum’s house, drop the dog off and hare back round to the cafe.  I loathe people being late and by now I’d been keeping Linda waiting for half an hour.

As if all that weren’t bad enough, after lunch we both pottered round to the chemist for some bits and bobs.  They didn’t have the denture cleanser my Mum wanted so I left Linda to her shopping and went back to my car.  It’s only when I arrived back at my parents’ house that I remember Linda had told me she woken that morning with a vertigo spell, didn’t feel she could drive so had walked into town and I hadn’t even offered her a lift home, despite the fact she lives half a mile away and the trudge home is all uphill.  I wrote a very grovelling email as an apology and can only hope she doesn’t ditch me as a friend!  My brain was already fairly AWOL due to my M.E. but now I’m galloping towards Menopause it’s almost permanently left the building!

Tuesday I spent the day practising a talk on Photoshop Elements which I gave to the beginner’s photography class that night.

Wednesday was my last Camera Club of this season.  I won’t miss going out in the evenings as it makes me feel proper rubbish, but I’ll really miss seeing everyone and having a focus to the week.  My Dad also re-took his driving test for the second time (which you have to do following a Dementia diagnosis) and we were all delighted when he yet again passed with flying colours 🙂  You absolutely have to be able to drive where we live as there is almost no public transport, so if he’d lost his licence we would all have felt the consequences.

Thursday my Mum had a hospital appointment in the city to have two new hearing aids fitted and I offered to take her so that we could visit a couple of wheelchair friendly shops afterwards for a potter around (we have zero clothes shops in the town where we live).  Now Mum isn’t drunk every day she’s starting to want to do things again and we both enjoyed our afternoon together.  As a bonus she can now also hear and I no longer have to shout 😉

By Friday I was on my knees energy-wise and starting my period didn’t help.  The good news, however, is my recent pain flare is much reduced and this week I have felt almost back to my usual self.  As an added bonus I haven’t had a migraine at all during my period for the first time in several months and my Endometriosis pain was bearable.  Yayyy 🙂

Sunday I had tickets for a Photoshop workshop, which was initially arranged for last month but had to be cancelled due to snow.  We all turned up and waited and waited and waited for it to start, but it was obvious they were having technical difficulties and 45 minutes later we were told it would have to be cancelled again as they couldn’t get the presentation to work.  However, we were all just about to walk out the door when a workaround for the glitch was found and the day progressed as planned.  Sadly I didn’t learn anything I didn’t already know, but it was still nice to have a catch-up with members from other Camera Clubs.

My sitting with my friends’ two kids went well last weekend and I ended up with a grown-up shot for the teenager and a fantasy one for the 8 year old which I’m calling ‘The world at her feet’.

 

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Weekly roundup

I appreciate I’ve been pretty fed up in recent weeks so you’ll be pleased to know I’m starting this week’s roundup with something cheerful.  Each year there is a photographic competition between all 52 Camera Clubs in the north of England.  Literally thousands of images are submitted from some of the best amateur photographers in my region and I always feel quite intimidated at the wonderful photographs which beat mine each year 😉  The judging for this year’s competition took place yesterday and I was expecting my usual disappointment when out of the blue I recieved an email to say I have won the trophy for best portrait.  Me!  Lying here in my bed crippled with pain and illness!!  To say I am chuffed to little meatballs is not doing my smiley face justice 😀  I will be presented with my cup in December at an awards ceremony on the other side of the country (why it takes so long is anyone’s guess), so I can only hope I am well enough to attend.

The second piece of good news is that my back pain, which has tortured me for three weeks now, suddenly decided it was bored and moved on to pastures new!  My body never ceases to amaze me.  I can go to bed in silly amounts of pain and wake up the next morning like nothing ever happened.  I’m not saying I’m totally back to normal and am still definitely having a pain flare, but my back is 70% better than it was for no real reason I can find.  Not that I’m complaining.

Wednesday I had to take Bertie to the vets.  He’s prone to fatty tumours and has a difficult to feel one between his ribs which has definitely grown in the past couple of months to over 1cm in length.  However, the vet is 98% sure it’s nothing sinister and we’re just going to keep monitoring it.  Between that 5 minute appointment and his 15 minute emergency treatment last week for his back pain the bill came to £104 ($150).  Eeeekkk!

Wednesday night was Camera Club and I did make it, only to leave halfway through because my back was so painful I couldn’t sit upright for another second.

Thursday the weather was uncharacteristically fine and sunny, which gave me chance to tidy up my tiny little garden following the ravages of winter.  As I’m crouching over cutting off dead leaves I think to myself that it’s probably not my best ever plan, bearing in mind gardening kills my back on a good day and I was definitely not having a good day, but then I thought “fuck it” my back’s hurting anyway so what’s the worst that can happen?  I went to bed that night in agony…………..then as previously mentioned I woke the next morning loads better!  Work that one out!  I’m wondering now if something had pinged out in my back weeks ago and the extended movements I did while gardening maybe pinged it back in again?  Stranger things have happened.

Friday I met my best mate for lunch and had a really great afternoon.  Fabulous food and fabulous company – my life doesn’t get any better than that 😀

Today I have my friends’ two daughters coming over for a photo shoot while they’re on their Easter break from school.  I’m going to try out my new plexiglass on the teenager, faking a rainy window shot, and the 8 year old is going to be sitting on the moon – don’t ask 😉

Before that though I need to get up, get dressed and take the hound out.  At least it’s not raining.  Yesterday Bert had a Vicar of Dibly moment.  He was splashing about in the puddles, stepped in one………..and went up to his shoulders in mud.  He was totally stuck and I had to wade in and rescue him.  Needless to say when we got home he went straight in the shower 😉

Dealing with a pain flare

As I’ve mentioned in my weekly round-up posts, for the past three weeks I’ve been having a humongous pain flare which came out of nowhere and could be caused by a number of things.  It’s body-wide.  My back hurts from my neck to my coccyx, my entire pelvis hurts, I have burning muscle pain in my thighs, burning pain in my knees, shooting nerve pains all the way down both legs to my toes (particularly in my calves), stiff ankles, burning elbows, a sore ribcage and burning wrists.  I have so many tender (like, fucking ouch!) trigger points that I can’t even count them.  I am not a happy chickie.

In respect of hEDS, physiotherapy is the main tool used to prevent pain and injury, but because I also have M.E. any kind of targeted exercise is out of the question.  Trust me when I say I tried for a whole year to do gentle physio exercises designed specifically for hEDS and failed miserably as it made my M.E. ten times worse.  In the end, even my physio had to admit defeat and told me to not to come back 😉  It’s really frustrating to know that if you could exercise and strengthen your ligaments and muscles it might help but I’m stuck with the situation so I thought I’d do a post on how I personally cope with a pain flare.

Most people’s first instinct is to reach for pain killing drugs, but of course due to my MCAD and the hissy fit my mast cells have at anything even remotely drug related that’s not an option open to me which sucks in every conceivable way.  So my only recourse is non-drug interventions.

1. Warm baths

Baths make my skin itch like crazy, but it’s worth scratching myself raw for the relief the soothing warm water gives.  I’ve even been known to run a bath at 2am and stay in the water til it’s gone cold.  Don’t underestimate the power of a bath.  You might like to add a handful of Epsom Salts to the water as it can also help, though sadly my mast cells don’t like that either.  I do wish they would fucking emigrate to Australia and leave me alone.

2. Topical pain relief

Despite not being able to take oral pain killing drugs I seem to have no issue with using topical pain relief, my favourite being Ibuleve speed relief max strength gel which is quite effective if you slather it on after a warm bath.  My burning knees and thighs, though, respond better to cooling gels and I personally quite like Deep Freeze. I can get both of these with my Tesco grocery delivery and can redeem my vouchers against them, which is great for the Ibuleve gel which is £9 per tube!  In the past I’ve also used Weleda Arnica massage balm and found it soothing.

3. Taping

When I was first taped by my physio I thought it was a complete bloody waste of time, but I know better now and it’s actually quite useful during a pain flare.  Kinesio tape mimics our skin, stretching as we move, but also helps to add strength to underlying connective tissue and allowing our own muscles and ligaments to relax.  I was given Levotape by my NHS physio, but Kinesio Tape Tex Gold is the popular choice if you’re going to buy some (both available on Amazon).  I have the 5cm wide beige tape and use a 25cm strip down each side of my spine on my lower back though you can tape any muscle or joint.  Of course, living on my own it’s a bit fiddly to apply and get straight so if you’re taping your back you’ll need the help of a good long mirror and there are areas I simply can’t do, like my upper back and shoulders.  The only drawback is no matter which tape I use it peels off easily – I just seem to have the kind of skin which nothing sticks to – and despite what you might read in reviews there’s nothing worse than bathing wearing kinesio tape and having the wet tape next to your skin (if it stays on that is, mine usually peels off in the tub).  It’s not cheap either at over £10 a roll but for me it’s worth the cost.  You can view various taping methods on Youtube if you just type in Levotape kinesiology tape, or there is some useful taping advice for EDS in these slides from Pradeep Chopra which also contains some excellent information on pain.

4. Bracing

Just lately I’ve been wearing just about every type of joint brace available!  During a flare your joints need extra stability to avoid further injury but braces also let your ligaments relax and heal.  I wrote a long blog post on splints and braces, which I’ve recently updated here.

5. Heat pads, cold packs

I luuurve my Dreamland electric heat pad and as I type this sitting up in bed it is keeping my spine snuggly warm.  I also like my cool pillow, especially when my menopausal feet are on fire!

6. TENS

Being allergic to pain killers I think I would have topped myself without my TENS machine over the years.  I have back pain every second of every day but I can take the edge off enough to still be active using my TENS.  I didn’t want an all singing all dancing one, so mine doesn’t do muscle stimulation or anything flash.  It’s a Med-Fit 3 which has dual channels meaning I can use two sets of pads at once.  I use the small 5cmx5cm square pads for stomach pain and the large 5cmx9cm rectangular pads on my back.   The only downside to the machine I use is that it doesn’t have a timer.  My last one did and it was great if I wanted to go to sleep with it on as it switched off after a set amount of time.  My TENS runs on a 9V battery and even though I use it for several hours at a time for days on end the battery often lasts months.

7. Complementary Treatments

Things like acupuncture, reflexology, massage and dry needling are all popular choices for pain relief amongst people with EDS, but sadly my mast cells hate them all (I was bedridden for 3 months after trying cranial osteopathy) so they’re not avenues I can personally pursue.  I still thought I’d include them, though, as I know many of you find them useful.

8. Resting, Stretching & Exercise

When we have injury or pain it’s a natural defence for our ligaments to tighten in order to protect the area and while this is important in the short term in the long run it can actually make pain worse.  Very gentle, with the emphasis on very, stretching is important just so long as you don’t go overboard which is easy to do when we are already so flexible but will only exacerbate the problem.  As I’ve aged stiffness has become a big issue for me and very gentle stretching has become increasingly important.

I admit to being torn on the exercise issue.  Bedrest seems to be viewed as the Devil in physio circles, but for me it’s vital to survival and even my pysio now agrees that I need more rest than most everyone else and that when I’ve injured a ligament it will take longer to heal if I don’t fully rest it.  So when I’m having a pain flare, like now, I do rest as much as possible for a good couple of weeks.  Having said all that, living on my own it’s not like I have the luxury of taking to my bed and never getting up again so obviously I’m still active making meals, doing laundry, taking care of Bertie and looking after my parents!

When the acute phase of a pain flare, or injury, is over I do try my best to walk every day, M.E. permitting.  I only usually manage about 20 minutes on the flat but at least it’s something and is as important for my heart, lungs and mental health as it is for my muscles and joints.  It’s frustrating to not be able to do more, but I have to live with the diseases I have and that’s all I can manage without making my M.E. worse.  Despite doing this short walk most days for nearly a decade I still can’t walk any further, which just goes to show that M.E. has nothing whatsoever to do with deconditioning and everything to do with the fact there is a fundamental problem with energy metabolism.

9. Distraction

Despite trying nearly all the above suggestions my current pain is not under control.  I’d go mad if I lay in bed focusing on how much I’m suffering, so distraction is the order of the day and I’ll do anything to take my mind off the pain.  Crocheting, renting my favourite box sets, editing my photos on my laptop, listening to talking books…….anything so long as my mind is active.  It helps more than you’d think and is one of the biggest tools in my pain armoury.

CONCLUSION

Living with a chronic pain condition is never easy and I’m not going to sugar coat the situation.  Pain is never something you get used to and I often think that the older you get, and the longer it’s gone on, the harder it is to deal with as your emotional resources weaken and you just get plain tired.  There are days I’m so fed up I curl up in a ball and have a good cry but let’s face it the pain is still going to be there when I’ve dried my eyes and wallowing in self pity is not going to make the pain go away.  It has to be managed as best you can and then ignored as much as possible, which for me is the only way I get through.   Healthy people who give advice on managing chronic pain need to live with it for a decade or two and then tell me how they’re coping!  It affects every waking second of the day and at night prevents you from sleeping when you’re desperate to be unconscious for a few hours break.

It’s probably unrealistic to expect to be totally free from pain when you’re living with something like hEDS but it is still possible to enjoy a fulfilling life.   Yes pain makes my photography challenging, especially as I struggle to bend or crouch, but if I manage my pain I can still enjoy my hobby.  I try to remain as independent as possible at home though if I were honest I’d employ more help if I could afford it, and I do still force myself to get out and do stuff even when doing so is going to temporarily make my pain worse.  It’s either live despite the pain or give up, become a hermit and wait to die and my life is too precious for that.

 

 

 

 

Weekly roundup

I’ve felt a little bit brighter this week and have managed three good nights sleep for which I am eternally grateful, but I’m still not able to physically do much due to my stupid back pain and am still more exhausted than usual.  The mast cell reactions I was having after meals also seem to have settled a bit which is a humongous relief, though I have woken this morning with my nose streaming which I’m assuming is hayfever being as though the Birch pollen season is now under way.

When you have complex medical conditions it’s virtually impossible to pinpoint what’s causing what.  My mast cells are currently over-reactive as I’m allergic to Birch pollen and I know my back is always more painful when my mast cells are having a hissy fit.  I’m also hugely peri-menopausal and my hormones are up and down like a Bridge’s nightie.  In animal studies, histamine has been found to be amplified by oestrogen so it’s no surprise that my mast cells are currently playing up.  Of course, I could also be having completely unrelated back problems due to my hEDS, who the hell knows?!

I must have been ovulating on Wednesday because my uterine pain was back with a vengeance and I spent most of the day unable to stand up straight, however it only lasted 24 hours and I was determined to go to Camera Club in the evening as it was our last digital image competition of the year.  I’m glad I did because my photos were placed a respectable 3rd and 2nd and my scores were enough to ensure I won the league so I’m now on course to receive two trophies at our annual dinner next month 🙂  In particular the judge loved my #metoo selfie, which made me happy because I love it too and the message the #metoo campaign promotes – it’s way past time for the silence relating to the sexual harassment and abuse of women to end.

My replacement plexi-glass also arrived so poor Bertie was drafted in as my model while I experiemented with taking fake rainy window photos.  He’ll do anything for dog biscuits 😀

Thursday I had some devastating news.  As regular readers will know I am battling my insurance company to extend my PHI (income protection) policy from 60 to the new retirement age of 65.  I’ve taken my case to the Financia Ombudsman who decided against me this week.  So I now have five days to put together an appeal.  Do I need this stress in my life when I already feel like shit?  No I do not.  There are times I think that Someone Up There hates me.

As I have been in so much pain recently I haven’t been able to do any cooking and my freezeer resembled Old Mother Hubbard’s very bare cupboard, so I bit the bullet on Friday morning and made several meals and smoothies.  Of course, that set my back pain off again and I’m lucky if I got three hours sleep that night.  FFS.

Some good news on the health front for a change.  I have severe GERD and was keeping it at bay with Famotidine (an H2 antihistamine) until January when my mast cells suddenly decided they’d had quite enough of those and rebelled.  I’d already become allergic to all the other H2 antihistamines on the market and my immune system doesn’t like PPIs either, so the only thing left to take was some Gavison liquid and pop Rennies like they were Smarties.  Needless to say I was in reflux hell for weeks at the start of the year and had an awful cough as the acid rose up into my lungs.  However, the good news is it’s settled down a bit!  I’ve started having my main meal at lunchtime and just a small snack at night and although I do still have reflux the cough has largely gone and the pain is bearable.  Yayyyyyy!  It does always get worse the week before my period, as progesterone makes connective tissue even more floppy than usual and the sphincter which holds my stomach contents in place doesn’t do its job properly, but I’m hoping once the menopause is over that might improve.  Watch this space.

The daughter of a friend who walks my dog is very bendy.  She’s now 13 and has started having mild back, knee and foot pain.  My friend knows all about my hEDS and we both agree her daughter is hypermobile, so she bit the bullet and rang her GP about it this week.  She was dreading it, knowing the battle I had to get diagnosed and the fact that my Doctor had never heard of the condition, so imagine both our surprise when before she even said what she thought the issue was her GP said “I think your daughter has hypermobility syndrome.  It’s not something I know much about, so I’m going to refer you to the muscular-skeletal specialist here at the health centre”.  Hurahhhh!  That the message about hypermobility is finally trickling through is brilliant and that this young girl will get the help she needs at an early age is fabulous.

It’s Easter Sunday today and my parents and I are going out for lunch.  It’ll be nice to have someone else do the cooking for a change and to not have to wash up afterwards!

 

Eyes & EDS

Our eyes are made up largely of collagen and being as though the collagen in Ehlers-Danlos Syndrome is faulty it stands to reason we may develop problems with our eyes.  Many of the issues we face are also common in the general population and as far as I know there is no hard data which demonstrates how much more likely EDS patients are to develop things like dry eyes, astigmatism or macular degeneration, but knowing we have a weakness in the make-up of our eyes we should be vigilant to any changes.  My Optician had heard of Marfan’s Syndrome but not Ehlers-Danlos Sydrome, so I downloaded a copy of Diana Driscoll’s ebook  which my Optician was happy to read.   It’s important to get regular, thorough eye check-ups and for your Optician to know you have EDS and the complications which can arise from that.

There is nothing wrong with my vision per se but I started wearing distance glasses, eg for driving and watching TV, when I was around 30.  The reason my vision had deteriorated is due to astigmatism which is a common finding in EDS.  Astigmatism is when the eye is shaped like  a rugby ball rather than being round like a football, which causes problems with focusing and makes the world blurry.  When I turned 45 I also started to need reading glasses.

In the last five years I’ve developed dry eyes, which feels like my eyeballs are full of grit which leaves them irritatingly sore.  In fact, some days they are so painful by the end of the day I have to lie down with my eyes shut and put a cold compress on them.  I use preservative free eye drops which you can buy from any high street Opticians which help but don’t totally alleviate the problem.  I’m sure my mast cells contribute and my eyes are starting to get quite bad at the moment as the tree pollen season starts, so I’ll resort to using anti-histamine eye drops instead.

I have mildly blue sclera which means that the white outer coating of my eyeball is thin.  I don’t think this causes me any problems but it is an indicator that you have Ehlers-Danlos.  Because my sclera is thin the capillaries in my eyes are clearly visible which again isn’t problematic but looks unsightly.

Photo of visible eye veinsThe biggest problem by far I face with my eyes are floaters.  These are due to debris floating around in the vitreous gel inside the eyeball, which cast a shadow on the retina and it’s this shadow which obscures your vision.  I first noticed I had a medium sized floater in my right eye around 10 years ago.  It was a bit irritating but I could move it out of the way if I moved my eyeball around and I only really noticed it when I was driving or reading.  Here’s what my floater looked like if I tried to read a book.

Ten years down the line and my floaters have gone berserk.  My right eyes is about 65% obscured by floaters and I now also have them in my left eye too.  No longer can I move them out of the way and they interfere with my eyesight to such an extent that I’m effectively losing my vision.  Reading and using the computer is tortuous, watching TV and driving give me painful eye strain and headaches, and you try taking a sharp photograph with eyesight which looks like this 😦

The presence of floaters can indicate a propensity to more serious problems like retinal detachment which is more common in EDS than the general population so although floaters in themselves aren’t considered a disease they can show up other issues.  If you have sudden flashes of light alongside floaters you must seek urgent medical attention.

Unfortunately the treatment for floaters is severely limited.  You have the option of paying for YAG laser surgery which breaks up the floaters (the laser surgery available on the NHS is NOT to be recommended), however they are still left inside your eyeball so over time the proteins simply stick together back again which seems to make the whole thing a complete waste of time.  The only other available treatment is a vitrectomy, where an incision is made into the eyeball, the fluid and debris sucked out and replaced by a saline solution.  However, this can cause infection, problems with pressure and in 80% of cases a cataract which then also needs surgery.  I’ve recently asked my Optician to refer me to the Hospital to discuss my floaters so I’ll see what they say.  There’s no way I’d have treatment at my local Hospital and will ask for a referral to one of the leading vitrectomy surgeons in the country, but even so it’s a daunting prospect.  The alternative, however, is to just leave the floaters which means effectively losing my sight.

Weekly roundup

I can only apologise for there not being a blog post this week……again.  It seems to be becoming a bit of a habit.   I am riddled with pain, not sleeping and as grumpy as a bear with a sore arse so to be honest I just haven’t felt very chatty.

Monday initially panned out as per usual.  I went to see my parents and did various jobs for them like renewing their car insurance and filling in some medical forms, then took Bertie for a potter down by the river on the way home.   All was fine, except I was feeling particularly tired and sore so at 6.30pm I ran myself a bath with the intention of slavering Ibuleve gel everywhere and having an early night.  No such luck.  Bert wandered into the bathroom then proceeded to do several whizzy circles before standing still like a statue and not moving, which usually means his herniated spinal disc is hurting like hell and he can’t get comfortable.  So I got out of the bath early and gave him some paracetamol.  It didn’t help and it became obvious he couldn’t sit without huge discomfort and couldn’t lie down at all.  He’s been on Gabapentin in the past and I had some tablets left over, so I gave him one of those which usually works wonders.  Not this time.  It didn’t even touch the sides.  By 10pm it was clear something was very wrong and, as there is a risk his herniated disc could slip entirely and paralyse him, I rang the vets for advice.  The vet was out on a call but eventually rang me back and said I had to take Bert through to the surgery.  So 11 o’clock at night saw me getting dressed and heading into town.  The vet was a bit flummoxed as to what the issue was, but gave him a Tramadol injection and said we’d just have to see what the next 12-24 hours brought and I had to keep an eye out for any signs of paralysis or neurological deficits.  Thankfully after his jab Bert managed to get some sleep (more than me at any rate) and was moving around more the next morning though still couldn’t sit or lie without pain.  So I rang the vets back and they left a prescription for 4 days worth of Tramadol in tablet form.  This helped enormously and he’s now totally back to normal, so I’m assuming he’d just sprained or strained a muscle in his back.  I can’t even put into words how relieved I am.

I, on the other hand, have come out in sympathy with a huge pain flare up.  In fact, my back and pelvic pain hasn’t gone since my period finished last week so although I’m not bleeding I still feel like I’m having my menstrual cycle, excruciating endo and adeno pain included.  My pain has never lasted beyond my period before, so I’ve no idea what’s going on.  My knees are aching, my thighs are burning, I’m getting shooting pains down both legs right to my toes, my entire back is painful, my hips are killing me and I have constant lower right abdominal pain.  I’m fucking miserable.  The pain is making sleep difficult and nothing I do is helping.

I was hugely tired following my period in any event so it feels unfair for my body to not let me rest.  You know it’s bad when I missed my Camera Club on Wednesday night and was barely out of bed from Tuesday to Friday.  God I was bored and barely spoke to anyone for days.  These are the times I’d kill for someone to present me with my dinner on a tray in bed and wash up afterwards, or even just ring me and ask how I am because my parents didn’t even bother 😦

Friday morning I received a phone call out of the blue.  A lady comes to my house to clip Bertie and we’d arranged for it to be done back in November but she didn’t turn up, even though I’d spent 1½ backbreaking hours shampooing, drying and brushing him so he was ready to be cut.  The worst part is she didn’t ring me to say she wasn’t coming until 15 minutes before the appointment time – if she’d rung me first thing I wouldn’t have bothered bathing him and getting him ready for heaven’s sake!  Then in December she arranged to come and have her daughter photographed and never turned up for that either.  She rang me to apologise saying she’d simply forgotten and eventually we re-scheduled for January.  Only she didn’t turn up again, this time not even bothering to ring and apologise and I hadn’t heard a peep out of her for two months until this week.  I think she treated me so shoddily I could barely speak to her.  After giggling an apology for not turning up back in January (her excuse is that she just forgot, again) and me telling her was totally unacceptable as I’d had to leave a Consultant’s appointment with my Dad early and it had taken me an hour to set the studio up, not to mention the time spent ironing two dresses for the little girl to wear and by the way has she forgotten I’m ill?, she had the cheek to say she was ringing to invite me round for coffee and a natter!  Some folk have no shame.   I felt like agreeing then simply not turning up, but unlike her I respect other people’s time and energy so just declined the invitation with all the politeness I could muster before saying I had to go and putting the phone down.  I was about as friendly as an Iceberg but I can’t stand people who continually treat you like shit then laugh about it like it’s inconsequential – it’s not.  Needless to say I will be finding someone else to clip Bertie.

Speaking of photographs, I have an idea in my head for an image taken through a fake rainy window, so ordered a huge piece of clear acrylic sheeting to act as the glass.  It arrived on Weds in packaging which looked like it had gone 10 rounds with Amir Khan and with an inch long scratch, so I had to take loads of photos and send them off to the company I bought it from.  They were fine and agreed to replace it, but it just pisses me off that every single thing you do these days goes wrong.  I barely have the energy to do stuff when it all goes well but when I have to repeat the process it’s all just too much.

Spending so much time in bed, though, I have managed to finish a photo I’ve been working on for a while.  It’s involved learning a few new photoshop skills but I’m fairly happy with the end result which I’m calling ‘Queen Bee’.  I do actually need a few more bees for the picture but they are still hibernating so I’ll have to wait until summer to totally finish the shot.  The tiara (from China, via Amazon) is gorgeous and I pranced around the house in it for most of the morning.  I swear I wasn’t born to be poor – being a princess suits me better 😀

Saturday was the first day we’ve had this year with the temperature in double digits, so despite still being in godawful pain I was determined to go for a walk with Bertie.  I rang my Dad to ask if he wanted to tag along and we went up to one of the Lakes both of us hobbling along like a pair of constipated ducks, my Dad from his spinal stenosis +arthritis and me from my fuck-knows-what.  The scenary was stunning as per usual, I never cease to be grateful that I live where I do and the exercise did wonders for my mood and spirit at the time, however at 3.30am this morning when pain woke me then refused to let me go back to sleep I second guessed whether or not it had been my best ever plan.  It’s times like these when you have no clue what’s happening or what to do about the situation that you really should have medical backup – a professional with knowledge of EDS who could offer advice and guidance.  But as usual I have no-one and am just left to get on with it.  It’s the 21st Century and the fact I’m receiving zero medical care for any of my three conditions really is a disgrace.

So as you can probably tell I’m grumpy, exhausted and fed up which is all a bit pointless as it doesn’t change the situation but this week I haven’t been able to be anything but.  I’d give my left arm for some pain killing drugs as my trusty TENS machine, which does usually help to mask my back pain, is having no effect whatsoever and the novelty of the shooting, burning pains in my legs is wearing thin.  I’ve also been having some mast cell reactions after I eat which I haven’t had in 3 years, however my brain won’t even let me think about that let alone talk about it so for now I’m ignoring it in the hopes it will bugger off.  Yes, I know that’s unlikely but I’m happy in my denial, reality being more than I can handle just at the mo.

Until next time my friends x

 

 

 

Weekly roundup

Following my peri-menopause post yesterday I’ve had a rash of fake likes.  You know they’re fake when a) they’re from random men liking a post on the fucking menopause and b) they’re from websites trying to sell a “healthy” lifestyle or some other such crap.  That these people prey on the chronically ill, or that they think the menopause, which many women find hugely difficult, is something they can cash in on disgusts me.  Bloody parasites.

My Mum has gone quickly downhill with her breathing this week and was so poorly on Weds we had to get the Doctor out.  She has severe osteoporosis and spondylitis, which can be hugely painful, and the usual paracetomol wasn’t touching the sides so she thought she’d try some Ibuprofen in the hopes the anti-inflammatory aspect would help.  And it did, enormously, which was great.  Around the same time she took delivery of her new custom made compression stockings for her fluid filled legs, which she has been wearing faithfully every day and which she says are really comfortable.  The rash of blisters on the inside of her legs has gone already, which is brilliant news, so the stockings do appear to be helping.  Only of course life is never that simple, and one or the other of the new treatments has put further strain on her heart and affected her breathing.  Four days without the new treatments, and with an increase to her water pills, her breathing is still rubbish but she’s thankfully not feeling as ill as she was.

My Dad finds my Mum being poorly really stressful and coupled with the fact his spinal stenosis is really troublesome now and very painful he too has had a tough week 😦

I started with awful pelvic pain again on Wednesday, which on Friday night resulted in my period arriving.  I was on day 20 of my cycle, when last month Aunt Flo didn’t arrive until day 40.  Couple that with my regular period-induced crippling migraine and I too have not had the best week ever so it probably wasn’t the most opportune time to tackle a technical job on my computer.  However my no-longer-supported-Windows-Mail email client has become so glitchy it was doing my nut in, so I bit the bullet and switched everything over to Thunderbird.  It took 4 hours all in all, and I managed to loose all my sent emails from the last 5 days, but I got there in the end which is nothing short of miraculous bearing in mind I’m not the most computer savvy person on the planet.

The only bright spot on the horizon was Tuesday.  I’d helped a friend by printing and mounting a photo she’d taken for someone’s birthday, so we met for lunch so that I could give it to her.  She works night shift as a volunteer Samaritan, which I admire hugely, though she had me in fits of laughter telling me of a sex caller she’d had the night before who lured her in with tales of self harm then ejaculated all over his phone.  Who the fuck calls the Samaritans just to jerk off?!

Today my Dad was supposed to be going out for lunch with some members of his family who were travelling over from the North East.  Mum was too sick to go so I said I’d cook us both a nice Sunday lunch at her house, however last night we had more bad weather and the main road from the North East to the North West is blocked by snow and a 12 vehicle pile-up, so I’ve no idea if our visitors will even attempt the journey.   My head is still banging with a migraine and the thought of eating, let alone cooking, a Sunday roast doesn’t do much for me but I’ll still go and there’s enough for three if Dad doesn’t make it out.

Will my goddamn periods ever end?  Will Spring ever arrive?  Has Prince Charming lost his fucking horse?  Can you become pregnant over the phone?  These questions and many others will be answered on the next episode of…………Soap.