Tag Archives: hypermobility

Weekly roundup

Summer has officially arrived here in the UK and the weather has been perfect – sunny, 20C and with a nice breeze.  I have felt brilliant for most of the week.  I do sooooo much better in nice weather, so long as it’s warm not hot.  My pain levels aren’t any less but I just have more energy and am usually more clear headed – I have no clue why.  The problem with this is that I then tend to do too much and end up in a heap on the floor.

I went to bed Sunday night excited.  I was having a day out the next day and was really looking forward to it but I should have known better than to think my body would co-operate.  I started with grumbling stomach pains at about 8pm.  My bowel had been playing up since my period ended eight days earlier so I thought it would just settle down.  Wishful thinking.  The pain got worse and worse until at 3am I gave up trying to sleep and risked taking some Junior Ibuprofen, which did eventually allow me to nod off some time around 4am.  Bertie woke me at 6am, however, so that was the end of that.

Two hours kip isn’t ideal for an M.E. person about to embark on a huge day out, but despite that and the continuing stomach pain Monday I had one of the best experiences of my life.  I went with a couple of friends from my Camera Club to a Castle in the south of Cumbria.  The weather was stunning, the Bluebells and Rhododendrons were in full flower and I had a perfect day (I can count on one hand the number of times I’ve said that in the last quarter of a century!).  The reason we went to the Castle is that they do bird displays, which were absolutely magical.  First were the owls, who flew above our heads and weaved in amongst the crowd to music.  Next were the birds of prey.  Vultures, Kites, Buzzards and Merlins whose aerial acrobatics, again to stunning music, took my breath away.   And the highlight of the day was feeding wild Heron in a sunlit meadow.  Herons are notoriously shy birds and I never thought in a million years I’d ever get to within 10 feet of one.  I know it’s not everyone’s idea of fun but it’s mine and I loved it 🙂
Last year a developer put in plans to build 10 large houses on a field next to my house.  The whole village was against it and successfully fought to have the plans rejected, but this week the developer put in fresh plans for 6 houses instead.  At the same time he’s appealed the rejection of the original plans to the Secretary of State, probably thinking we’ll be so busy fighting that we won’t have time to fight the new plans!  So Tuesday night I attended a Parish meeting to discuss the situation then had to put together objections to the new plans and submit them by Friday.

My post-exertional malaise usually comes on 48 hours after I’ve done something, so I woke on Wednesday feeling like I’d been trampled by a herd of wild elephants wearing hobnail boots.  It was my cleaning day but my Cleaner, whose Dad is terminally ill, didn’t show up for the second week running so despite feeling like crap I had to change the bed sheets, do some laundry and clean the worst bits of the house.  I could have done without it and manage to injure my wrist and thumb which are now in a brace.

Thursday I’d arranged to visit an animal park half an hour’s drive away with my best mate which probably wasn’t my best ever plan considering  I was sore and exhausted, but we still had a giggle at the goat racing and ferret hurdling, plus I stuffed my face with veggie burger and fries and still had room for a pudding 😉
Saturday I got my garden furniture out of the shed.  It hasn’t seen the light of day for 2 years cos last summer the sun forgot to arrive, and mice had nibbled two ginormous holes in my swing seat cover, but I’m just grateful it’s nice enough to sit outside even if the local midgies think I’m breakfast, lunch and dinner.  Of course, I came inside at noon to watch Harry and Meghan get married.  I keep waiting for my prince to come but he’s taking his sodding time and I hope when he eventually turns up he isn’t ginger with a beard.  He can be as rich as he likes but and I wouldn’t mind if he had a dysfunctional family cos mine would fit right in 😉




The same but different

When healthy people talk about illness they seem to think sick people are all the same.  They have a disease with a defined set of symptoms and a set treatment plan and that’s the end of that.  Only of course it’s not.

People with hypermobile Ehlers-Danlos Syndrome are all different.  One member of the family may have mild symptoms that don’t cause them any problems (like my brother) and others may be so ill they are frequently hospitalized.  One person with hEDS may also have POTS and another not (I have dysautonomia but not POTS).  Some people dislocate joints willy nilly yet I thankfully only sublux and then not until I reached my forties.  Yet we all have the same genetic disease.

Mast Cell Activation Disorder is even worse.  I react to almost all medications, herbs and supplements but so long as I avoid high histamine foods can eat quite a varied diet.  Other people can only tolerate a handful of foods but can take as many drugs as they like.  I’ve had grade 3 anaphylaxis but never any swelling, while other people swell like a balloon.  I have seizures, other people don’t.  I get hives but no joint pain.  Other people have awful pain but no hives.

M.E. is a spectrum disorder, in a similar vein to Multiple Sclerosis.  There are those who are mildly affected and can work or raise children, while others are completely bedridden and reliant on round the clock care.  Some people sleep 23 hours a day while others are plagued with insomnia.  Some people are physically knackered but mentally fairly good, while others have horrendous brain symptoms but can walk the dog every day.  Some have swollen glands and a permanent sore throat, others don’t.

It’s easy to beat ourselves up when we read about a fellow sufferer trying a drug or treatment which has helped yet when we try it we end up ten times worse, but what works for one person simply doesn’t work for another.  I actually groan out load when I read yet another “x, y or z cured my M.E.” story in the newspaper because everyone I know will then ask if I’ve tried it, like I’ve lain in bed suffering unimaginable horrors for 24 years not bothering to try every fucking treatment known to mankind.  Or someone tells me about a hEDS patient who ran the London Marathon, the implication being that if only I tried harder I too could be an athlete (I am an athlete, cos I shower twice a week and it’s the equivalent of climbing Great Gable Fell!).

I wish I had a well defined disease which could clearly be seen on an MRI scan or under the microscope and then cured by a tablet or surgery, but I don’t and it’s that which causes suspicion.  Suspicion that I’m not, in fact, sick at all because conventional tests look fine.  And I wish I had a disease which affected me the same way it affects every other sufferer in the world, but I don’t and it’s that which causes confusion.  Confusion that someone else with M.E. can still work, or that someone else with hEDS can do pilates, so why can’t I?

I can’t measure myself against anyone else.  Although I share similarities with other patients our stories are different.  I have M.E but I also have hEDS, MCAD, HIT, endometriosis, adenomysosis and a brain injury all of which interact with each other.  My MCAD affects my M.E. which impacts my hEDS and my four weekly menstrual torture affects every sodding thing!  My inability to tolerate drugs has massive implications for treatment and effectively rules out surgery, as does my inability to be able to exercise in any form.  I’m really happy when other sufferers find something which helps but the complications of my diseases means that someone else’s saviour will probably not be mine, especially when I’ve been ill for nearly a quarter of century and irreversible damage has already been done to my body.

We are similar yet unique.



Weekly roundup

I’m shattered.  The last few weeks have been quiet, but this week everything’s happened at once and I’m feeling like a wound down Duracell bunny who’s had a blow to the head.

In the new year plans were submitted for a housing development in a field next to my house.  We all fought hard to have it rejected and thankfully the local planners turned it down.  New plans were submitted for a much smaller development of 6 houses, more in keeping with the tiny hamlet where I live, which we were all basically happy with however on Monday we learned that the developer has appealed the original decision which is going to the Secretary of State in June.  FFS.  So now it’s a mad scramble to learn as much as we can about planning laws so that we can fight it……..again.

Tuesday my Dad took me through to the city for an opthamology appointment regarding my severe eye floaters.  The Doctor took one look and told me they were so bad I’d have to be referred to a better hospital, so I’m now waiting for an appointment at the RVI in Newcastle.   She also worried me by saying she’d seen something other than floaters in my eyes, so lord knows what that’s all about.

Wednesday my kettle decided to die, so I’ve had to fork out £90 for a new one.  Every sodding time I get on my feet financially something happens to stick me back in the red again.  I love my kettle though – it’s one that stays just below boiling all the time so I have instant hot water 24/7 for both cooking and brew making.  Plus it’s push button – tipping my old kettle up killed my wrist.

Thursday I drove an hour to the coast with my Mum for a bone density scan.  By the time she was 54 she’d lost one third of the bone mass in her spine from Osteoporosis.  It runs in our family as her Mum suffered, as did her sister and niece.  She was put on HRT in her mid fifties and her bone health improved substantially, however she started spotting so was taken back off HRT and put on weekly Alendronate (Fosamax) tablets instead.  Her bones were never monitored after that, though, so we’ve no idea how helpful or not it was.  A few years ago an injection was approved for the treatment of osteoporosis so Mum switched to that every 6 months, but again we’ve no idea if it’s been working.  She hasn’t had a bone density scan now for 20 years which is a sodding disgrace.  She shouldn’t be having to ask the GP to refer her, especially as she’s already had a fractured wrist.

This weekend there has been a big photography event at which my Camera club had an exhibition.  Friday I volunteered to help set everything up, not knowing that out of the four other volunteers one would bugger off after the first half hour and two others after the first hour, which left me and another woman to put up over 100 prints.  It took 3½ hours and I was so exhausted and in so much pain by the time I got home I didn’t know what to do with myself.

Saturday was International M.E. Awareness day.  There were lots of articles in local papers here in the UK, appearances on TV and radio by people affected by M.E. and a short documentary on the plight of sufferers was made which can be seen here.  I post stuff about M.E. on Facebook all the time but I’m sure only other M.E. sufferers ever read or view it which kind’ve defeats the object :-/

And as if all that weren’t enough I had my period.  When are they going to STOP?!!!!!  On the plus side though some of them aren’t as painful as they used to be endometriosis-wise and this month I have not had a migraine during my period despite the fact I’m exhausted and really busy, hurrrrahhh!

Two lovely things have happened this week too which really lifted me.  When I was at the photography exhibition, another photographer who’s on my FB page but who I don’t know well came up to me and told me she loved seeing the photos I post on Facebook and how well I did considering my ill health and everything else I have to cope with.  And I also received a truly lovely message off a lady in New Zealand I ‘met’ through following each other’s blogs on our dogs, who told me how proud she was of me for my photographic achievements and how much she enjoyed seeing all my photos.  How fabulous of these two ladies to take time out of their day to give me support and encouragement – made me feel all warm ‘n fuzzy inside 🙂



Weekly roundup

The sun is shining for a change, hurrahhh, and Bert and I have had a couple of lovely walks down by the river wearing a t-shirt for the first time this year (me that is, not the dog – the dog thinks clothing is for wusses).  At least they would have been lovely if it weren’t for the fact that I feel like death warmed up.  I have had a week of hormone hell.  Not sleeping, not eating and so emotional I’ve felt like I was losing my marbles.  One minute raging, the next minute weeping and generally just feeling overwhelmed and like I’m crawling out of my skin.  I hate not being in control of how I feel and am so exhausted I could sleep on a washing line.  When is this Menopause shit going to be over?!

Thankfully I’ve had a fairly quiet week which is a good job as I’ve barely had the energy to shove a meal in the microwave, however my cleaner didn’t turn up on Wednesday so despite the fact I’ve only just got my back pain to settle down I had to start changing the bed sheets (the dog had been in the river then come home, snuggled actually in the bed under the duvet and left a huge muddy wet patch where I sleep) and washing the floors (I swear they are so dirty they must be hazardous to human health).  She’s let me down so often now I think I’m going to have to find someone else.  It’s all been legitimate – she was off work 3 months with a bad back, various weeks when her daughter was off school ill and now her Dad is terminally ill with cancer – but I think she forgets the reason I have a cleaner is that I’m not well!  She also took on walking Bertie two days a week, which lasted all of 2 months before she decided she didn’t like it and quit.

The Doctor rang me about my Dad but thinks that none of his symptoms are linked to the kappa paraprotein in his blood.  I’m still not convinced as she couldn’t explain his chronic fatigue, but she has referred him again to the spinal unit to have another look at his back so I’ll mention my concerns to them and see what they say.

Stuck in bed and feeling bored I decided to write an article for a national photography magazine on overcoming obstacles.  I’m disabled with a hobby which involves being mobile and skint in a hobby which can cost the sodding earth, so I wrote about how I’ve managed to find ways round these limitations.  The magazine editor happened to belong to a Camera Club in southern Scotland and he liked the piece and my photos so much he’s asked me to go along and give a talk one night at his Club.  Gulp!  I hate committing to stuff because I never know on any given day how I’m going to wake up feeling, but at the same time it’s flattering to have been asked.  My lovely friend John has offered to drive me so I think I’ll give it a bash and see how it goes though it won’t be until after September when the new season starts.  Without my photography I honestly think I’d be losing my mind at the mo.

My elderly neighbour Sam and I were talking about Scampi the other day.  She said she’d had some Whitby scampi and how nice it was and I mentioned I’ve never tried it, so two days later she rocked up at my house with a packet for me.  Aren’t some people kind? 🙂

Today is my parents’ Ruby wedding anniversary.  40 years of bickering and having absolutely zero in common 😉  My Mum was with my biological Dad for 18 years before that, so she’s been married for nearly 60 all in all.  Blimey.  My step-brothers, aunt, uncle, nieces and partners are all going out for a meal tonight to celebrate.  I can’t stand my Uncle, who shoots beautiful wild animals for fun, or my eldest brother who in 7 years has never once offered to do a thing for our parents, but I’ll grin and bear it and a least I’ll be eating food I haven’t had to cook myself!




Weekly roundup

I was delighted with how well my brain in particular coped with my Photography day away last Sunday.  I had to be up, dressed and breakfasted by 7am (which anyone with M.E. will know is a killer), take the dog out then carry on into town to drop him off at my parents’ before being picked up at 8.15am.  I can get travel sick going ten minutes up the road so was dreading the seventy minute car journey but thankfully all was fine and I had a really clear head all day, yay 🙂  That’s the good news.  The bad news is my  back screamed the entire time and having to sit upright  for hours on plastic chairs with my feet on the floor (hard work on a good day) meant that by 11am I was in so much pain I actually felt both sick and faint.  In the end I gave up all self respect, took my shoes off, put my feet up on the chair and sat squirming in every conceivable position which must have driven the people sitting behind me bonkers.  I loved looking at all the wonderful pictures but my back is still hurting a week on.

Weds my Mum was at the hospital for cataract surgery.  My Dad took her and while her surgery went to plan my poor Dad had one of his severe dizzy spells while she was in theatre.  The GP had told him to request help, so bless him he told the receptionist who directed him to A&E.  They were great, did a heart trace and bloods but the results didn’t show anything untoward.  Just before it happened his leg had simply collapsed beneath him and he would have fallen if he hadn’t been next to a set of wheelie bins.  He has mild spinal stenosis, has had leg weakness for a year now and has been frightened they would just give way on him, but the spinal Consultant told us back in February that wouldn’t happen so now I’m not sure what’s going on.  The GP had told me to keep her informed of his dizziness, so I wrote her a letter telling her what had happened.  My Dad has also recently been found to have an IgA kappa paraprotein band in his blood work which can be a sign of melanoma or just be labelled as having “unknown significance” (a condition called MGUS).  Without any further tests my Dad has been diagnosed with MGUS, however leg and back pain, fatigue and kidney problems can be a sign of melanoma and he has all three.  So I included that in my letter to his GP who bless her is lovely and new to the practice after my Dad’s own GP left suddenly last month to care for his sick wife.  I then received a phone call from the practice to say the GP wants to speak to me this week about the contents of my letter, so we’ll see what she has to say.  I’m just conscious from my own experience that each Consultant only sees his or her part of the puzzle and often no-one looks at the bigger picture.

While out walking Bertie on Thursday I found a bird’s wing which I brought home thinking it might come in handy for a photograph.  I decided to try something a bit different and minimalist and this is what I came up with.  I don’t know if you can see from this small image but I’ve superimposed an owl’s face onto the feather.

Friday night was our annual awards dinner for my Camera Club when we have our trophy presentations.  I only go out socially in the evening about 3 times a year so I was really looking forward to it and spending time with my lovely friends who I don’t really get much chance to chat to at busy Club nights.  However, I arrived to find that the lady who had organized the event had this year taken it upon herself to do a seating plan and I wasn’t sitting with any of my friends.  Instead I was on a table consisting of mainly quiet people I have zero in common with and one I didn’t know from Adam.  I could have cried and my good friend, who is quite reserved and struggles to chat to people she doesn’t know well, felt the same way.  Three other people came up to me and said how unhappy they were about the situation so I went up the organizer and told her it had not been a good decision.  She took the right hump and became very defensive.  At the end of the night I and my friend overheard her slagging me off at the bar to anyone who would listen, which is hugely unprofessional from a member of the Club’s committee.  For a start I hadn’t done anything wrong other than have a different view point to her and for seconds is the remit of a Camera Club to help people with their photography or does it include telling people who they can, and can’t, speak to at social events?  And if you do decide the remit of the Club is to dictate social events the rule should apply to all.  However, married club members were allowed to sit together yet us singletons weren’t allowed to sit with our friends which doesn’t seem fair to me.  Any kind of emotional stress makes me feel really ill and I was in tears with exhaustion and disappointment on the drive home.  I then didn’t get to sleep til 3am due to all the adrenalin and today feel like I’ve been it by an express train.  The fact that she’s going round telling other people I was the only one to make a fuss really pisses me off.  My quieter friends are too intimidated by her to say anything but I’m not, so I spoke for all of us then of course I’m in the firing line and the target of her friend’s wrath who of course will take her side.  To add insult to injury they started the awards part of the evening when I was in the loo having a wee and I missed my trophy presentation 😦

This weekend is the deadline for my appeal to the Financial Ombudsman’s Service about my PHI complaint.  My brain is like mush from stress, pain and lack of sleep but I have to get it done.  I’m going all the way with it and asking for a referral to the actual Ombudsman – I’ve nothing to lose and everything to gain.  Wish me luck!



Challenging misconceptions

I’ve heard just about every insult and misconception imaginable in respect of my illnesses over the last two decades.  From my biological dad’s “there are people in the world worse off than you, pull yourself together” comment when I’d been told I was critically ill with M.E. and might not make it through the night, to the common “M.E…..hmmm, isn’t that where you feel tired a lot?” (if only!) to the “have you not tried some painkillers?” in respect of my EDS (bugger, why didn’t I think of that?!).  Trust me when I say these remarks still rankle even if you ignore the fact that people you barely know feel they have a right to question you about your private life, make judgements about your situation or give medical advice when they have zero qualifications and know nothing about the diseases from which you suffer.

I do now take every opportunity, however, to set the record straight.  I’ve given up my right to privacy to discuss with total strangers how my body fails me and the repercussions this has on my daily life.  I admit to using shock tactics “yeah, I went to bed last night and woke up with a dislocated jaw” alongside graphic details of my bowel habits or how often I vomit, which usually shuts them up but at least they slink off having learned something, even if that something is to mind their own sodding business 😉

I was at my Camera Club last week.  My back was screaming and as I apologised to the lady sitting next to me for squirming in my seat she said “is there nothing they can do?” which was my cue to explain that EDS is a genetic disease and there is no cure.  “What about pain relief?” was her next question, which then gave me the opportunity to discuss mast cell disease and my allergies to all things chemical.  The poor women probably wished she’d never asked, but having done so at least she came away from the conversation with a smidgen of information about my illnesses and empathy for my situation.

On a completely different topic, my lovely dog walker this morning was telling me about a friend of her daughter’s who hasn’t been round for a while because she’s “not well”.  I asked what was wrong and my friend said “she’s fatigued, has joint pain, is sleeping a lot and generally feels unwell which, let’s face it, is called being a teenager!   All the blood tests she’s had done have come back negative so there can’t be much wrong with her” which was my cue to tell her that M.E. is the biggest cause of long-term absence in school children and the problem with diagnosis is that there isn’t a simple test which can confirm it.  My friend had no idea children were affected by M.E. and you could tell felt very sheepish that maybe there actually was something wrong with this teenager and she wasn’t just being dramatic.

People are naturally curious about difference.  If they see someone using crutches they’ll often ask “what happened?” expecting you to say you’ve broken your leg so they can sympathise, then are mortified to learn you have a lifelong disease.  If it’s a genuine question I’ll try to put them at their ease while at the same time explaining in a couple of sentences that I was born with a genetic disease called Ehlers-Danlos Syndrome which affects my collagen, which means I can have lots of joint injuries.  They’re then usually embarrassed as all hell for asking but they’ve still learned something and that’s my goal.

Of course, not everyone is asking out of kindly curiosity.  Some people are dismissive, rude and downright nasty.  A young lad shouted out “lazy bitch!” through a car window at me a couple of years ago as he drove past me on my mobility scooter walking my dog.  I’ve often been told to “get more sleep”, “exercise more”, “find the love of a good man” or “have a tipple” (if only!) and my stock retort has become “sadly I don’t think a glass of wine or an extra twenty winks is going to cure my crippling genetic disease” at which point they usually have the decency to blush.  And if they’re being really rude my retort is “I was born this way.  Were you born a rude, ignorant twat lacking in social skills or have you had to work at it?” 😀

On the whole, though, most people don’t realize they’re being insensitive when asking questions about my health and/or lifestyle.  When I was at my Camera club committee meeting recently we were discussing who should answer queries made via the Website.  As webmaster I assumed it would be me, but the Treasurer said in a pitying voice “but what about when you’re ill?” which really put my back up.  For a start I’m ill every fucking day of my life and for seconds if I couldn’t do the job I wouldn’t have volunteered for it.  I’m sure she thought she was being considerate but honestly it just felt patronising and like I was being singled out as inadequate.  If I need help I’m a grown woman perfectly capable of asking for it but until I do it feels rude for someone to make assumptions about my abilities.

I’ve made a conscious decision to stop being embarrassed about being sick and to stand up for myself.  I wrote a Facebook post about endometriosis recently, admitting that it hurts to pee and poop in front of 100 people many of whom are male and acquaintances rather than proper friends.  But, y’know, more than half the population bleed from their vaginas every month and I’m sick to death of acting like it doesn’t happen or like it’s some kind of shameful secret.  It’s as normal as eating and breathing and it’s about time women owned it.

I’ve done nothing to cause the situation with my health yet often in the past I’ve been made to feel by society that I’m somehow culpable.  Bad.  Weak.  Less than.  That I should be ashamed of not being healthy and am a burden, a drain on the nation’s resources.  I’m none of those things.  In fact I know non-sick people who receive more health care than me (pregnant women/new mothers for example) and I’d love to see how some of those who look down on me would fare living alone for over two decades floored by illness, lacking in resources, help and care, battling the medical profession at every turn, taking on a rescue dog and then looking after two sick, elderly parents.  I’d wager I’m more resilient, resourceful, hard working, determined and stronger than most of the healthy people I know.   And let’s not forget that despite my struggles, limitations and shitty health I’m one of the most talented photographers to attend my Camera Club in its 30 year history – stick that in your pipe and smoke it 😀

There is a strong perception that the chronically ill are weak, vulnerable, needy souls who have nothing much to offer.  The truth is my chronically ill friends are the strongest, most selfless, determined, creative, talented people I’ve ever had the priviledge to know.  Be proud.







Weekly roundup

Last week’s Roundup was late, this week’s is early and yet again I’ve not had the chance to do a blog post this week – can you tell life isn’t plodding along as usual?!

The people at the Met Office had forecast a mini heatwave this week so I thought I should shave off Bertie’s thick winter coat so he was nice and cool.  However, the groomer who’s been coming to the house to clip him has let me down on three occasions in the last 6 months so I’ve had to ditch her which meant muggings here had to do it herself.  It takes about 4 hours from showering to the finishing touches, kills my back and hands, then I spend days sneezing as I’m allergic to his dander.  Needless to say I hate doing it and just pray I find another mobile groomer soon.

Both my parents had blood results returned this week and both were abnormal.  My Mum’s cholesterol was 9.6 despite the fact she is on the highest dose of statins available.  She also has a low red blood cell count and abnormal RBC width, alongside new onset acute kidney disease (she already has advanced chronic kidney disease).  My Dad still has an IgA kappa paraprotein band which shouldn’t be there and new onset chronic kidney disease.  On top of that his ECG results must have been abnormal as he’s been referred to the heart unit at the Hospital.  He’s always had a slow heart rate, but it must have now dropped below 60 hence the referral.  He’s also suddenly developed severe dizzy spells and vomited so much last week during one he blocked the bathroom drain 😦  He’s never smoked, rarely drinks, his cholesterol is lower than mine and I’m vegetarian, and he’s exercised his entire life (as in run marathons, done 50 mile bike rides and now he’s nearly 80 still goes fell walking for hours each week), yet he still has a heart problem.  Which just goes to show much of the healthy living advice is bollocks.  He’s been advised that if he has another severe vertigo attack with vomiting he has to call an ambulance, so I’m assuming they think he has bradycardia and is at risk of a heart attack.

Wednesday night I attended my first committee meeting for my Camera Club.  I’ve taken on a volunteer role which means I can now attend committee meetings if I so wish and I wanted to discuss a few points with the other Members.  It was an interesting experience.  It’s obvious that some Members have very busy lives and they simply don’t have the time to carry on with their posts on the committee but will they give them up?  No.  The job just continues to be done badly because they can’t hand over their power to anyone else.  It’s nuts to me but then I don’t have much of an ego really and certainly wouldn’t put my own desire to feel important over the best interests of a Club full of other people.

I went to bed following the meeting fine……..and woke up Thursday morning barely able to move.  Something’s happened to my back again and having just got it right from last month’s shenanigans I’m gutted.  This time the pain is only on the left side but it’s probably the most pain I’ve ever been in with my back – fucks knows what I’ve done but I am miserable 😦

This weekend is my best mate’s birthday.  She’s spending the day with her other half so we’d arranged on Thursday night to go for pizza then to a comeday club in the city.  Thanks body for crippling me on the one day in the year I was doing something fun and different.  I had no idea how I was going to cope as I could barely drive the car but I ploughed on and had as good a time as possible bearing in mind sitting was agony.  I barely got a wink of sleep that night though as I couldn’t find a single position which wasn’t painful.

The mini heatwave arrived, the first warm sun we’ve seen since last August, and I was stuck in bed sleep deprived and in pain.  There are days I fucking hate my life.

The reason I’m doing my Roundup today and not on Sunday is that tomorrow I am attending a Photography day 80 miles away.  I’m having to leave the house at 7.45am and probably won’t be back til 8pm, which is a massive undertaking on a good day and I have no clue how I’m going to get through when I’m in this much pain and sitting is like a form of torture.  FFS.

As if all that weren’t bad enough I heard back from the Financial Ombudsman’s Service and they have rejected my PHI complaint.  I now have until 30th April to decide if I want to appeal to the actual Ombudsman, which I probably will as I have nothing to lose.  I am INCENSED that disabled women can be discriminated against and it is fucking legal.  Legal!  How can treating me differently to men or healthy women ever be justified?!  The thing that makes me more mad than anything though is that no-one gives a shit.  I’ve tried to get everyone from the Pension’s Minister to the Disabled Law Centre to the media to Liberty interested and they couldn’t care fucking less.  Well, I’m not an immigrant or an ex Russian spy so why would they?

On that cheery note I shall love you and leave you.   Until next week my friends.