Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

A surprising lack of response about my thoughts on the Persecution of women, which appears to back up my point that we are all so conditioned to it that it’s considered normal.  I am so outraged when I think of what women round the world go through every day of their lives that I want to scream but my anger obviously isn’t massively shared. I wrote about the issue on my Facebook page and barely received a single like or comment. I did, however, have a comment from a man I don’t know from Adam.  He laughed that I’d used the word “persecution” and told me Jews, Blacks and Gays said “hi”.  For a start he doesn’t know my religion and I could be Jewish.  I could also be gay or married to a black man, so his level of assumption was astounding.  And maybe he’s forgetting that half the Jewish race are women, half the black population are women and homosexuality isn’t the sole confine of men.  He then accused me of being sexist because I pointed out that he was male and couldn’t know much about the experiences of women of any race, orientation or religion.   It’s male attitudes like this that have contributed to the persecution of women and he can’t even see it.  When boys  under the age of 6 are routinely taken into the bush or desert to have their penis chopped off without anaesthetic or pain relief and their bum holes stitched up so they can barely poop for the rest of their lives (the girl my parents sponsored in Africa was a victim of female genital mutilation), or when men are routinely sodomised by their wives or parents, or sexually assaulted by some random stranger (as I was at the age of 11), or when they are deemed a criminal and incarcerated for having sex with their girlfriend and getting them pregnant (as many Irish girls were right up until 1996), or when they have acid chucked in their faces, or are stoned, or bricked up behind a wall and left to starve to death for speaking to a girl they like then they can discuss with me how women aren’t persecuted and not until.

On to less upsetting topics.  It was my Dad’s 78th birthday this week and I took him and my Mum out for lunch.  Considering he was planning his Mum’s funeral he had a lovely day and I know how lucky I am that both my parents are still alive, even if some days I do want to strangle my Mother.

My cleaner was on holiday this week so I had to use up precious energy changing my bed and scraping the muck off my floors caused by my furry child.  She is worth every single one of the pounds I pay her because there is no way on earth I’d be able to keep my house nice without her.  She also usually cleans the inside of my car, which I had to do myself because it was going in for its MOT and looked, and smelled, like the bottom of a swamp.  I was flippin crippled for the rest of the day from having to bend to hoover.  My Mum’s cleaner is also on holiday, so not only did I clean my own house I cleaned my parents’ house too which couldn’t really be left because of all the visitors they are having due to arranging the funeral.  Consequently I’ve got nothing else done all week because I’ve been too knackered and in too much pain.

And speaking of pain, since my period ended ten days ago I have had wicked stomach and bowel pain that has, at times, left me feeling really nauseous and unable to eat.  This is another reason I wish the actual Menopause would hurry itself along because I’m worried about the increasing severity of my endometriosis and the irreversible havock its wreacking on my internal organs.

I’m having a small afternoon tea party for my birthday next month and spent a very nostalgic evening last night going through my music collection to put together a playlist.  I hadn’t listened to some of the tunes for 30 years, yet still knew every lyric.  I’ve gone for a mixture of genres as the people attending the party will be a mix of ages, though the only rock song I’ve included is ‘Since you been gone’ by Rainbow, which was an anthem of my teenage years to which I happily head banged in my fringed leather jacket til I gave myself a stonking great headache – it really is a wonder we weren’t all brain damaged!

My second outing with my new photography hide to catch the Kingfisher yielded results and I’m tickled pink 😀  It’s not the best photo in the world but, after 4 years of trying, I’m just thrilled to get a picture of this tiny, very hard to capture, most beautiful of wild birds.

Speaking of photography, for those of my lovely readers who have been asking I do sell my photos online internationally through Redbubble.  You can buy anything from cards to duvet covers, ipod skins to hoodies and all sorts inbetween by clicking on a picture you like then choosing ‘available products’ from the tabs underneath.  I’m currently adding my latest pictures so bear with me, as it does take up a lot of time and energy and I have precious little of either.  It constantly amazes me that someone in America is sleeping beneath a duvet on which sits a photo of my fabulous Bertie, or that someone is currently walking round in leggins or carrying a phone with a photo on which I have taken.  Me!  Sat here in my bed.  I ❤ the internet.





Weekly roundup

It’s been a strange week with one thing and another.  My Step-Dad’s Mum, who is 103, has been in a brilliant care home for the past 4 years.  A couple of weeks ago she had a heart attack, but being as though she has a DNR (do not resuscitate) order she wasn’t hospitalized and was cared for in the home.  Ten days ago it looked like she was passing away but the nurse inserted a drip and gave her antibiotics for a chest infection and she rallied.  I do wish the nurse hadn’t intervened because all it achieved was to drag her dying out.  Five days ago the Doctor went to see her and took the drip and meds away.  My Dad has sat faithfully by her bedside ever since and she finally passed away last night.  She’s never liked either me or my Mum for reasons unknown and I’ll go as far as to say she’s been a right bitch to both of us so it’s not like I’m sad about her death, however my Dad will be devastated.  No matter how old or how ill, our Mums are still our Mums.

We had a couple of dry(ish) days at the start of the week so I managed to get a few much needed jobs done in the garden.  It’s rained here in Cumbria almost non-stop for about 6 weeks now and was so cold last night I’ve woken to condensation on my bedroom windows.  FFS, does it not know it’s the middle of bloody summer??!

Thursday I took a friend from Camera  Club to photograph red squirrels at a secret location I don’t shout about.  They’re so cute I could watch them all day.  By mid afternoon I’d started with tummy pain and was a bit flummoxed as to what could be causing it.  It got worse as the day progressed, which is all I needed as I was having 5 other camera club members round to my house in the evening for a meeting about next season’s programme.  The meeting went ahead but I was feeling pretty ropey and couldn’t wait for them all to leave so’s I could get into bed with a hot water bottle.  My period pain always starts initially with stomach pain, but I thought I was only on about day 9 or 10 of my cycle so it couldn’t be that.  Er, wrong!  Woke the next morning to Aunt Flo and when I checked my diary I was actually on day 24 of my cycle – doesn’t seem like two bloody minutes since the last one!  Consequently I was awake for most of Friday night with awful endo-related period pain and a migraine which hung around through most of Saturday.

My lovely furry child Bertie turned 9 this week 🙂  I adopted him when he was 2½ and have no clue where those six years have gone!  I also have no idea what I did with my time or money before I got him but wouldn’t swap him for the world.  It’s because of him I got into photography and for that I will always be grateful.  He is my loyal and faithful companion and as I type this, sitting up in my bed, he is asleep between my knees with his head resting on my thigh.  I love him to the moon and back even though he pinches food the second my back is turned, eats sheep shit then licks my face and barks so much he’s in danger of perforating my eardrums 😉

Today is forecast to be dry and, dare I say it, even a little bit sunny so I’m palming the dog off with my Mum and taking my photography hide down to the river.  In the past 12 months I’ve managed to get good pictures of a red squirrel and a heron, both of which have been on my bucket list for the past 4 years but I still haven’t managed a picture of a Kingfisher.  I know where one is currently perching every day at noon, so I’m hoping if I keep going to where I know he hangs out I’ll eventually manage a shot.  Wish me luck!

Weekly roundup

My week got off to a flying start with me having the most fun anyone can on their own in a spare bedroom.  One of the themes for our competitions next season at Camera Club is water so I’ve wracked my brain to come up with something unusual.  I decided to try photographing exploding water balloons, so bought myself a cheap kids paddling pool to catch the fall-out and got set up using make-shift gear.

I hadn’t a clue what I was doing and people who do this kind of photography usually have expensive kit which allows the camera to flash at exactly the moment the pin pops the balloon, but I had to make do with my own reflexes and dodgy timing.  It took 20 goes, by which time I’d nearly flooded the house, but eventually I got the shots I wanted.  It was huge fun but I’m not going to do it again in a hurry 😉

Out of the blue on Monday my best mate asked if I’d like to meet for lunch.  She’s been really busy lately plus feeling rubbish, so it was lovely of her to make space for us to have a catch up.  I only see her at most twice a month as we live 45 minutes drive apart, so I make lists of stuff to tell her which she finds hilarious.  If I don’t write it down though I can’t remember what I did yesterday let alone a fortnight ago.  If I had a working memory I’d be truly awesome 😉

After a lovely afternoon with the bestie my week basically turned to shit and I lost 3 days to a brutal ovulation induced migraine, along with associated crushing fatigue and vomiting.  On the upside I barely ate for days and consequently  lost 2lbs, so silver linings and all that 😉

I knew the migraine was coming when I woke on Wednesday morning.  Sometimes they arrive out of the blue, but on the whole I get the classic prodrome phase, ie the 24-48 hours before the pain starts when I realize something’s afoot.  This can be a ravenous and insatiable appetite, usually for carbs or sugar.  Or boundless, almost manic, energy where I get all sorts of jobs done.  Or like this week, an overwhelming heavy, achy fatigue and falling asleep left, right and centre usually accompanied by nausea.  The pain started at about 7pm Wednesday night and I didn’t feel normal again until Saturday afternoon.  What a waste of my life.

Sometimes I can battle through despite the pain but this migraine was so severe every time I moved my head I felt like someone was battering my brain from the inside, consequently I had to stop in bed.  I did contact another 2 solicitors re my PHI case but so far haven’t heard back.  I also wrote to the human rights organization Justice, not because they can help me but just to highlight the issue and how some disabled women with PHI policies are being discriminated against so that everyone else can be equal.

In true summer fashion it has piddled down almost none stop for 2 months here in the north of England, but on Saturday we had a dryish day and, feeling half human for the first time all week, I palmed Bertie off with my folks and headed off down to the river.  For my upcoming big birthday I’ve treated myself to a new photography hide, which is a folding camping chair with a hood which comes over to form a kind of tent.  It’s way cool and there’s plenty of space inside for me to sit and have my tripod and camera in front of me.  There was even room for me to squat for a much needed pee and all in broad daylight on a public footpath 😉  I was hoping for a glimpse of the elusive Kingfisher who did arrive then got spooked and buggered off again, so I sat and watched some Sandmartins feeding chicks in their nests on the river bank.  It was lovely to be out in the fresh air, even if the second I packed all my gear up and started to head back to the car the heavens opened and I got bloody drenched.

While my Mum has been really ill the past few weeks she hasn’t been able to drink as much, and it’s been lovely.  We’ve had actual conversations where she has been lucid and rational and not spent the whole time giggling.  However she’s on the mend now and the drinking has started again in earnest, almost like she’s making up for lost time.  How anyone can be plastered at 9.30 in the morning is beyond me and by 4pm she’s away with the fairies.  I miss her.  I try to feel compassion but instead usually just feel sad and still a little bit mad if I’m honest.

95% of the food I eat is organic and freshly prepared, but some days I’m too sick to make anything and have to rely on pre-made stuff from the supermarket.  I choose items with as few ingredients as possible and seem to get away with it.  This week I discovered Quorn fishless fingers and was gobsmacked at how much they taste like regular fish fingers!  It’s actually really nice to eat junk food every now and again, especially when your appetite has vanished and you feel sick to the pit of your stomach.  And, yes, that is tomato ketchup on the plate – fuck it, I was feeling sorry for myself and it cheered me up!

Aging and chronic illness

As most of you know, I turn 50 shortly and while that’s not exactly old it’s not exactly young either. In the decade since my 40th birthday my joints have starting subluxing, I’ve developed stiffness so severe at times I can’t even walk to the loo, my back pain is so bad it both scares me and stops me sleeping, and my previously unknown MCAD has reared its ugly head, to the point where at one stage I actually thought I would die from multiple anaphylactic events every day.  Make no mistake, getting older when you’re already chronically ill sucks.

I have the utmost respect for anyone who works for a charity having done it myself for many years, and know I owe a huge debt of gratitude to all the wonderful people working for EDS and M.E. organizations, however I do have a bit of a beef with them and it’s this: all their information is aimed at either kids or young adults (and by young I mean pre-menopausal).  Their magazines are full of young folks doing sports, fundraising by whatever means possible and generally being positive and not letting their disease beat them.  Which is great.  But speak to them again in 20 years time and they might be telling a very different tale.

Did you know there is not a single piece of research that’s been carried out on older people with either EDS or M.E.?  There is loads of info on possible complications in pregnancy yet not a thing on the Menopause, despite the fact that not all women will have babies yet all women will go through The Change!  I find this utterly shocking, particularly in the case of EDS where patient forums show that many women aren’t diagnosed until their forties because that’s when their symptoms seem to go nuts (as did mine).  Consequently there are no information leaflets from the charities on what to expect as we age, which is actually quite discriminatory.  I should really sue, if I could find a solicitor to take the case 😀

Due to an absolute lack of information on aging with my diseases I have no idea what to expect.  Even healthy women can struggle with joint pain, exhaustion, dizziness and stiffness at Menopause so when I have these symptoms I don’t know if they’re normal or part of my hEDS.  I don’t know if they’ll pass or if I should be concerned and ask to see a Rheumy.  I don’t know if I have a greater chance of wear and tear arthritis, though I assume I must have.  I have no clue if the extra exhaustion I feel is part of my waning hormones or whether age is negatively affecting my M.E.  Will my decades of inactivity adversely affect my heart and, if so, why is that not being monitored?  Am I more, or less, likely to have a stroke?  What’s the deal on osteoporosis?  Skin thins with age, so will mine be worse as a result of having hEDS?  Am I more likely to bruise as my veins, skin and capillaries weaken?  And 200 other questions I don’t know the answers to.

Health in general seems to be all about either children or pregnant women.  No-one seems to give much of a stuff about issues which affect the middle aged.  It’s almost like we don’t exist, and it’s not until we’re in our seventies and at risk of old age diseases like Alzheimers that the medical profession starts to give a stuff again (my Dad’s dementia care, for example, has been excellent yet I’ve never once had my memory problems evaluated let alone treated).

At the moment I feel like I’m dropping to bits, but is that a normal hormone-induced dropping to bits or is my hEDS actually deteriorating?  Should I be pushing for a referral or just putting up and shutting up?  There is an urgent need for studies on chronic illness in the older age bracket.  We need to know if there should be more regular monitoring of our conditions, whether treatments which are affective in younger adults are still as effective in older adults, and most importantly what the normal progression of our diseases should look like as we age because unless we know what’s normal we can’t know what’s abnormal.

Of course, the lack of information on hEDS and M.E. is nothing in comparison to the lack of information on MCAD, particularly in the UK.  Peri-menopause has caused my mast cells to go off the charts bonkers yet I haven’t seen a specialist since I was diagnosed 4 years ago.  I’m not being monitored in any way, am having to treat myself in the best way I know how, and am basically white knuckling it with no idea what my post-menopausal future will hold.  Which is scary considering MCAD may pre-dispose me to leukemia and other cancers and carries the daily risk of sudden death from anaphylaxis.  Or MCAD may not predispose me to cancer – noone knows, which is kind’ve my point! It seems that, in respect of the middle aged, no-one knows much of anything when it comes to my diseases and that, as a matter of urgency, has to change.




Weekly roundup

I’ve got to be honest, this week hasn’t had many saving graces.   My Mum is still really sick but despite ringing the health centre at 2pm last Friday afternoon I couldn’t even get to speak to a Doctor let alone see one.  The only thing available was an appointment with the Practice Nurse who said her chest and throat were fine and she didn’t need any medication, which we knew was bullshit and Mum continued to decline over the weekend.  You can’t ring for an appointment on a Monday morning because the phone is rammed, so I told my Dad to physically go up to the Health Centre for 8.30am and get her in to see a proper Doctor as an emergency.  Even at that time in the morning there were 10 people waiting in the queue infront of him (!) but he did manage to get her in to see a Doctor at 10am, who prescribed not only another lot of penicillin but six steroid tablets a day for a week and a third inhaler.  FFS, if she’d been prescribed those on Friday night she wouldn’t have had the horrendous weekend she did.  Makes my blood boil.

She was only slightly better by Wednesday and still had a raging sore throat.  Fortuitously she had her yearly appointment with the respiratory nurse, who told her the sore throat was a severe case of thrush due to her steroid inhaler.  Why the hell hadn’t this been picked up by the practice nurse or the bloody doctor?!  So she’s now on a spray for her throat and has been taken off her steroid inhaler for a month and given a different one.  She’s still coughing her lungs off but at least she’s now started sleeping better and eating again, after a month of not doing either.

To make things worse, my Dad got a call from the Care Home where his Mum is to say that they think she’d had a heart attack and had slipped into a coma.  She’s 104, can’t walk, can’t hear, can’t see and is totally doolally so to be fair her death would be a blessing.  My Dad and his Sister then spent most of Thursday and Friday sat next to her bedside, only for her to rally and ask for some dinner!  So it looks like she’s not dying after all which I’m not sure is a good thing.

Inbetween all that drama I had the news about Liberty not taking my discrimination case, and heard from Tesco that they’re not upholding my complaint about Bertie’s insurance being increased by 700%, so I was proper down in the dumps.  To add insult to injury I seem to have pulled something in my left hip and something in my right shoulder, so I’m hobbling and having difficulty using my arm.  No clue how either injury happened.  There are times when life seems like one long struggle and I simply don’t have the energy to keep climbing uphill.

To take my mind off everything I decided to work on a photography idea I nicked off the internet.  My cousin actually thought it was real and that I’d painted the landscape scene myself lol!  If I could paint like that I’m fairly sure I wouldn’t be as skint as I am 😉

Mistakes, I’ve made a few

Following on from one of my recent posts, I thought I’d share my experience of pacing.  Managing energy expenditure is important for many EDS patients and absolutely vital if you have M.E..  I’m going to talk from an M.E. point of view, because my EDS tiredness and my M.E. “tiredness” are leagues apart and respond to different techniques but I hope EDSers will still gain insight from my ramblings!

When I first got M.E. 23 years ago nothing was known about the disease and there was zero advice on how to manage the condition.  I had a very busy and active life, including a full time job with a two hour commute, being in the middle of renovating a three story Victorian town house, hobbies (aerobics, horse riding, weight lifting, tennis), friends, a boyfriend and an active social life.  When I first had symptoms I struggled on at work for six months until I became so ill I couldn’t get out of bed in the morning, let alone do a ten hour working day.  Looking back, this was my first mistake.  If I knew then what I know now I would have stopped work immediately and rested.

Having been forced to give up work I had a lot of boring time on my hands during the day, so for the odd few hours I had some energy I thought it was a good opportunity to catch up on all the jobs that needed doing in my house including pulling down and replacing the ceiling on the landing and getting on with doing up the top floor of the house.  I felt horrendous but I was a really hard working, motivated young woman and illness wasn’t going to stand in my way.  Mistake number two.

I had no intention of letting my disease interfere with my social life either, so on Fridays and Saturdays I’d lie in bed all day feeling like death warmed up then at 6pm drag my leaden body out of bed, shower, do my hair, put my slap on and get glammed up, ready to go out with my friends or boyfriend for a meal, to the pictures or out round town.  It used up my energy reserves for days but I needed to keep up the pretence to myself that this sickness thing was just a blip and wasn’t going to stop me living my life.  Mistake number three.

Of course, I got more and more ill and my relationship with my boyfriend began to suffer.  Scared I was losing him I agreed to go on holiday to Kenya and to cut a long story short this is where I got Meningitis and ended up nearly coming home in a coffin.  I lived, but developed very severe M.E. as a result and lost my boyfriend anyway.  Humongous, life-changing mistake number four.

Now I didn’t have the choice of pacing or managing my energy.  For the next four years it was all I could do just to breathe in and out and blink my eyelids.  In fact, I went through a stage where I was so weak I couldn’t even blink my eyelids and my GP said that ideally I needed to be on a ventilator to give my lungs chance to rest.  Instead I wasn’t even hospitalized and just left to lie on my own in my bed without medical care for 23 hours a day because back then M.E. wasn’t treated or taken seriously and on the odd occasions I did see a  Consultant it was a psychiatrist not someone who could actually physically help me.

After four years I came to terms with the fact that my old life was gone forever and even if I was going to be bedridden for the rest of my life I was still alive and needed my days to be as good as possible.  And this is when I started pacing.  There was still no advice on it, I just instinctively knew that my body was in total disarray and I needed to do something to help it to stabilize.  So I devised a schedule, breaking my day up into activity and rest (and by rest I mean lying down in a dark room with no radio or mental stimulation).  Make and eat breakfast, rest for one hour.  Talk to a friend on the phone for 10 minutes (I had a timer), rest for one hour.  Make and eat lunch, rest for one hour.  Have Mum visit for 10 minutes, rest for one hour.  Be on computer for 15 minutes, rest for 90 minutes.  Eat tea, rest for one hour.  Watch tv for half an hour, sleep (or try to!).  I’d have a bath once a week when everything else had to go on hold because bathing floored me.  And on Wednesdays I employed a nice lady to clean my house and do my shopping, so had extra rests that day because just her mere presence in the house killed me.

I kept this schedule up for an entire year with no improvement in my health whatsoever.  Everyone moaned about it.  My Mum struggled to come at the time I needed her to, my best friend wanted to chat on the phone longer than ten minutes, friends I’d made online wanted me to reply to their emails or chat on a forum I was on, and I was so bored when resting I was scared I’d literally lose my mind.  But I stuck to my guns and carried on with my plan.  And slowly, slowly it started to work.

After about 18 months I started to see symptoms I’d had for years lessen.  I started to feel like I had a little bit of stamina, if not energy.  And this carried on for the next 6 years with baby step improvement.  I was able to increase my activity times and decrease my rest times and eventually made it out of bed, if not really out of the house 🙂

A decade later I am now moderately affected by M.E. not severely and can have some semblance of a normal life but only because I still pace.  I’ve discovered that I have most mental energy and clarity first thing in a morning, so that’s when I do all my blogging, computer stuff and paperwork.  I have most physical energy between 11am-3pm, so that’s when I visit my parents, do my shopping and take the dog out (paying someone to take him out first thing in the morning when my physical energy is low).  I crash every afternoon, so am in bed from around 3.30pm to 7pm.  I no longer have to lie in a dark room, but if I want to nap I do, or I listen to a talking book, or maybe check Facebook.  Evenings I have another spurt of mental, if not physical energy, so I stay in bed but tend to edit my photographs at night or email friends.

I still only bathe twice a week because I still find it absolutely knackering and I lose a week every month to my period, when I’m in bed much more and can’t do much of anything else (which is why I’m finding peri-menopause difficult, not knowing when Aunt Flo will arrive).  In the winter I go to my Camera Club one evening a week, but make sure I rest more during both that day and the next.  I also meet my bezzie for lunch once or twice a month, but again this involves planning my energy, resting more the day before and two days after.  If I’m having a crap day, which I usually know the second I open my eyes in a morning, I make sure I use my mobility scooter more that day, sit with my feet up more, or lie down more instead of sitting – all things which help conserve energy.  Planning and pacing have become second nature to me and are still absolutely vital in keeping my M.E. stable.

Pacing doesn’t just involve mental and physical activities though.  I’ve had to change who I am as a person.  I’m inquisitive and passionate and when I was well I used to get involved in debates and follow politics and was active in various charities, but all that has had to stop.  Emotions, be they good or bad, kill me.  Laughing is exhausting, arguing is more so.  My best mate also has M.E. and when we meet up for lunch we inevitably start discussing the state of the world, but after twenty minutes we both decide we need to stop because we’re absolutely exhausted (I can literally see the colour drain from my friend’s face).  I have to curb my naturally bubbly nature and try to keep my emotions on an even keen, which to be honest I finally really hard!   Stress is an absolute no no and can have very serious consequences for my health, which is why I don’t tolerate bullshit here on my blog or in my private life.  There are no second chances – you stress me out you are not in my life anymore, end of story.   It’s a matter of survival.

Sadly there are things I can no longer do no matter how hard I try.  Exercise, obviously.  And read.  I’ve always loved books and they saved my sanity as a child, but reading is so exhausting and taxing it’s no longer enjoyable or feasible – I miss books more than words can say, though talking books fill the gap a little bit (and are massively more expensive 😦 ).

Of course, there are times when you have no choice but to push through the energy barrier, eg. to attend a wedding or funeral, or if something goes wrong in the house, or if the electric goes off, or if one of my parents is sick, but during these times everything else goes on hold.  I’m not on Facebook, I don’t blog, I often don’t bathe at all, I don’t keep up with the washing and ironing, I eat solely out of the freezer …….something has to give.  Nevertheless, crises or extra events always, always rob me of energy and I then need a period of extra rest and recuperation afterwards to regain my equilibrium.

Statistically, children who develop M.E. are more likely to recover than adults and, while this may be partly down to the fact that their immune systems aren’t fully developed, I personally also think it’s down to the fact that they can rest fully.  They don’t have to worry about finances, don’t have to cook, shop, clean or do laundry.  Don’t have to apply for welfare benefits or deal with leaking roofs or broken boilers.  Other than being socially isolated they don’t really have huge worries or stressors and this does tend to improve outcome (though of course sadly not for all kids).

I often see questions about pacing from newly diagnosed people on the ME Association’s Facebook page and think it’s pointless replying.  When you’re first ill there is no way you are going to pace effectively.  You haven’t twigged that you are going to be ill for years and that your life is changed forever.  Haven’t realized what’s involved or the extend to which being chronically ill is going to change not only you but everyone around you.  That knowledge and acceptance only comes with time and experience.








Weekly roundup

Another week lost to my hormones and last night I woke at 2am feeling tearful and unable to cope.  That’s not like me at all and I had to give myself a good talking to and reassure myself it was the peri-menopause and it would pass, but I can’t lie – it was scary and I feel very emotionally fragile today.  However, the week has had its good points (more on that later) so you’ll be pleased to know it wasn’t a total write-off.

It’s been a month now since Liberty said they might take on my PHI case and I have been on absolute pins waiting to hear their life altering decision.  And I have waited.  And I have waited.  And in the end I got bloody sick of waiting and emailed my contact there.  Who I learned has now left the organisation.  FFS.  So I rang their advice line, which is only open between 6.30pm and 8.30pm Mons and Thurs.  Monday I rang 25 times and the line was permanently engaged, then they cut the phone off at 8.20pm, ten minutes before they actually close.  Not something anyone should do to a middle aged hormonal woman 😉  Furious, I emailed their general office (which you’re not supposed to do with a legal query) informing them of my situation and asking them to get the legal department to ring me.  And have they?  That would be a big fat no.  How they ever get laws changed is a mystery, cos so far they’ve been a bloody useless shower.  I’ve been trying for 5 years now to get someone to help me and no-one gives a shit.  I should be used to no-one giving a shit, after all I’ve been ill for over two decades and no-one has ever given a shit, but just for once I had hope that someone would care that I’m being treated badly and want help.  I should know better.

My period finally arrived on Wednesday and the relief was enormous.  I spent the entire day in a brilliant mood, dancing and singing, kissing the dog and loving everyone I met.  Well, almost everyone.  I still don’t love the guy with the upholstery business up my drive who lets his customers park outside my garage which blocks my car in despite a two foot “NO PARKING” sign, and I still don’t love the farmer next door who has had a horrendously noisy fan going for ten hours a day all week drying his grain so I’ve had to have all my windows shut despite the fact it’s been 26C outside, but I loved everyone else so that was nice 😉

Did I tell you that after Tesco put up my pet insurance to £122 a month I emailed the CEO of Tesco Bank to whinge (you can just google most CEOs email addresses online)?  Well, I received a reply from one of his minions this week saying the email had been passed to the Investigation Team from whom I would hear shortly.  I know exactly what their response will be and it won’t contain the line “we’re going to reduce your premium back to £19 a month for the lifetime of your dog” will it, so it’s all a bit pointless.  However, I do encourage anyone being unfairly treated by any company to email the CEO because if we all complained to The Boss more they might stop ripping off their customers.  I also made sure I told Mr Higgins in my email that I had already reported my case to the Financial Conduct Authority, who are also a fucking useless shower but he’s not to know that.

Sent to me by my lovely reader Laetitia 🙂

Can you remember my thoughtful and generous friend at Camera Club who bought me Photoshop Elements 13 as a gift?  Well to say thank you I took him out for lunch this week, where we spent two happy hours discussing all things photographic.  It’s great to talk to people who share my passion for photography because the subject bores everyone else I know shitless and even the dog yawns when I ask him if he has any ideas for next season’s Millennium Trophy competition 😀

Speaking of photos, I persuaded my neighbour to pose for me in a weird picture I had in my mind.  It’s a bit different to my usual stuff but I still think it came out OK all things considered:

Last autumn I was up the lakes taking photos of the stunning scenery and got chatting to another woman doing the same thing.  We hit it off instantly and although we live over an hour’s drive from each other agreed to meet up for a shoot sometime.  Well the sometime was Thursday evening and, despite the fact I was in the middle of my period and felt really crap, we met to photograph the sunset.  Sadly the sunset didn’t happen – it just went from blue sky to black sky with no red in the middle – but we still had a brilliant time.  She’s a warm, intelligent, open, funny, empathetic, enthusiastic-about-life kinda girl and right up my street.   To be honest, when I was lying in bed at 3pm that afternoon feeling like I’d been run over by a bus I was dreading having to get dressed, drive up the lakes, be all chatty and fun, then drive the hour home and I did, in fact, end up so ill I had to stop the car twice on the way back because I thought I was going to barf, but I was still glad I went.  We had loads in common (including endometriosis!) and never stopped laughing and I know I’ve made a new pal 🙂

Fri and Sat I spent mostly in bed recovering from going out on Thursday evening!  You’d think I’d been on an all night drink and drugs binge rather than sitting by a beautiful lake for a couple of hours and my head still feels mashed three days on.  Going anywhere at night absolutely floors me :-/  However, I must get my backside out of bed today because I need to visit my Mum, who is poorly again.  I think I told you she ended up on Penicillin after catching a bug off my Dad, but now she’s finished the tablets the virus is back with a vengeance and as if that weren’t bad enough there’s been some mix up with her inhalers and she’s been given the wrong one.  I couldn’t get her in to see a Doctor on Friday but she did see the Nurse Practitioner, who said her chest and throat were clear and wouldn’t give her any more antibiotics.  But my poor Mum spent a solid hour coughing yesterday morning until her one remaining lung was on fire and she still can’t speak, eat or sleep so there’s something going on and I’ll get her in to see the Doctor on Monday if it’s the last thing I do.  When I asked her how she was this morning her reply was “I just feel lost” which broke my heart 😦