What a Bastard!

Its been a wee while since I last wrote.  I was away in London at the weekend for a family get together, which was nice, although I always find being away from home a very anxious and tiring experience.  I also get anxious about leaving our cats to fend for themselves.  I know they will be OK for 1-2 nights as they’ve got a cat flap and can come and go as they please; we also fill electronic feeders so they’ve also got enough food to cover a couple of days.  I just worry about them and I don’t really relax until I’ve taken a roll call when I get back.

Thankfully we both had booked annual leave days the Friday before and the Monday after so we could get organised before leaving and chill out a little when we got back.  I’d managed to get a good deal on tickets as I’d booked them some time ago; I’d also booked an overnight stay in an hotel near Euston station.  We were up early on the Saturday to catch our 08:50 train, we got to the station quite early only to find out our train had been cancelled.  We didn’t worry too much as the next one was only 20 minutes later so it wouldn’t delay us too much.  Unfortunately however, the seats I’d booked were no longer ours and the train was packed; we did however manage to find seats.  The plan was to meet Dave’s parents at Euston and then go onto the Cutty Sark where we were meeting the rest of his family.  It looked like a nice day but by the time we got to Greenwich it was pissing down.  It was nice to see everyone and catch up but there was a lot of walking and standing around; it was quite tough on my poor wee feet and legs even though I had my compression stockings and Fitflops on.  By the time we got back to our hotel at around 9:00pm, I could no longer walk.  Getting up in the middle of the night to visit the bathroom was a nightmare ‘cos my feet were so painful; I know they could have been a lot worse if I’d had other shoes on, thank gawd for small mercy’s.

In the morning I’d recovered quite a bit but I was not up for hiking, thankfully we were heading home on the 11:50 train.  When we got home and opened the front door the most horrendous smell slapped us in the face; we thought there would be a mountain of poo in the cat trays, but they seemed OK.  We soon realised that one of the automatic feeders had not worked and all the food we’d left out had gone rotten in the heat and our poor little babies were starving.  We fed them quickly, and thankfully they forgave us eventually, after some more feeds.  I’m now on the lookout for new automatic feeders.

One thing I notice when I’m away from home is the food I eat tends to be a bit shit.  I  don’t always have time to hunt down the best options and therefore end up eating whats available, i.e. sandwiches and cake washed down by a lot of coffee.  Also, I think there is something in my head which makes me think I’m on ‘holiday’ therefore, the normal eating rules don’t apply.  I find myself wanting things I’m not usually bothered about, like crisps and biscuits.  However, none of this helps with how I was feeling physically on the Sunday morning.  I felt I’d been on a bender; I felt hungover.  All the cells in my body felt jangly and exhausted.  Also, I don’t think I drink enough water when I’m away and I think this has an effect on my cells.

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Brunch; tuna baguette and latte…

The other thing that seems to happen when I eat badly is I become addicted to more of the same.  When I got off the train at Birmingham, New Street I headed for Marks & Spencer to pick up something easy and quick for dinner (chicken tikka, rice and naan’), but I also felt compelled to buy more crips and biscuits; not just a couple but enough to last a few days.  Talk about shooting yourself in the foot.  I wonder sometimes if I will ever stop this destructive behaviour before I suffer a life changing heart attack, or similar.  All I can do is each day is try to do better.  Sometimes I wonder whether I have any control over how I look and feel anyway, maybe I am and feel exactly what as I am intended.  What a Bastard!!

Bullshit…

I think the best thing to do is move on, no point dwelling it the past.  I had taken a quick look at my last post and realised I was in a bit of a dark place then; thankfully things are not quite so dark now.  Its not all rosy in the garden though.

I’ve been trying to eat better, cut down on some of the rubbish.  I find it difficult to be organised, especially in the morning, particularly on work days.  I’ve got into the habit of taking spelt toast with peanut butter to eat later.  Its easy to prepare and easy to transport.  However, the last couple of days I’m not sure if its the toast, peanut butter, the coconut latte or my hot lemon drink but something has given me severe upper right flank pain radiating to my back.  Stupidly I looked on google and I’m now convinced I’ve got pancreatitis.  Despite what you may think that’s a lot better than what I thought it initially was – the big C.  Actually, in all honesty I think I suffer, as many do, with health anxiety and I think this is heightened by my job as a medical secretary.  In every specialty I’ve worked I recognise myself as having some of the symptoms of chronic disease.  I’ve been working in oncology recently and typing those letters has got me all in a cancer-fluster.  It would seem women of a certain age (i.e. my age and peri-, post- or menopausal) who develop symptoms of bloating, stomach distension, abdominal pain, intermittent bleeding etc. are automatically sent to the gynaecologists for further investigation.  Biopsies follow, and before long they are diagnosed with some form cancer even though they are well, and all they had was a little polyp and a healthy lifestyle.  Then its chemo or radiotherapy, or both and their symptoms, which were bugging them a little, become full-on cancer treating sickness.

I’m no medical professional but I do wonder whether the drug companies and companies with vested interest in health care are screwing us over.  I believe the medical profession and the public are being held to ransom by the drug companies.  Doctors are told how, when and what to treat within NICE guidelines (calling them NICE is the biggest irony) and the solution always seems to be drug-related and if they can’t cure it they’ll cut it out with surgery.  There never seems to be a holistic solution, something which takes into account the person, their choices, lifestyle, background etc.  Because of my struggle with weight, depression and recently diagnosed ailments of lipoedema and fibromyalgia, I have become increasingly interested in finding solutions which are more natural, herbal and organic.  Unfortunately, there is a lot of information on the internet, some good, some bad and some downright crazy.  Its very difficult sifting through it all trying to find the thing (s) that work for you.

The internet is were I found the idea of hot lemon drink with ACV, ginger and honey along with coconut oil pulling, LCHF and a number of other things.  I’ve given them all a go, but I’m not convinced of their benefits for me.  Is it because I’ve not tried them long enough or is it because I still continue with all the other rubbish.  Do I need to become a lettuce eating, nut chewing, no meat, no dairy, no chocolate only vegetables and fruit-eating monster.  Would that cure me of all my ills, will it prevent me from getting or having cancer, will it ease my symptoms from lipoedema and fibromyalgia?  Have I got the will power and stamina to really, truly try it out?  Do I have lipoedema and fibromyalgia?  Are these conditions real or are they invented to lessen the mental suffering of people like me who are shit at dieting?  As each day goes by it becomes more and more difficult to make any sense of anything, fake news and bullshit seem to be the order of the day, so what is real, what is fake?  I thought I was fairly clever but I don’t know if I’d recognise bullshit anymore.  Maybe hot lemon and ACV is bullshit!

There’d be mayhem!!

Fucking hell.  I’m going down and I can’t stop it.  I feel exhausted, tearful, angry.  I’m out of control; the more I try, the more I feel everything getting further away.  I’m all alone in this big, shitty world.  I feel the dark thoughts descend and the bile rise up.  I am angry; disappointed that no-one can see me struggle.  No-one can see how desperate I have become.  But how can they.  I’ve mastered the art of pretence.  I also think I’ve mastered the art of turning people off, even though I’ve never tried to.  I feel I send out a vibe of desperation which everyone ignores, ‘cos no-one really wants to get involved.  It’s too time-consuming, too messy, not their problem.  People only want to be around happy, fun people; they don’t have time for other people’s depression, ‘cos they’re just a heartbeat away from their own.  The truth is everyone is alone in this shitty world, everyone is desperate and everyone has mastered the art of pretence.  God forbid their mask of happiness should fall and we should see behind the pretence.  There’d be mayhem!!

I envision a hundred million people out there, typing away on blogs, feeling the same as me.  Desperate for a connection, desperate for someone to notice.  But while we live in a world with Facebook, Instagram, YouTube, Twitter and a multitude of other distracting social media platforms and apps we will never re-connect in the real world as human beings who need each other, and who need to be noticed.  In the meantime we will continue to type, telling our sad little stories of our sad lonely existences, peppered with recipe ideas or dieting tips with the odd photo of our cats and dogs.  All the while hoping that someone, somewhere reads it and understands, hoping against hope they will reach out and connect with us through some shared emotion, disease or love of the same thing.  Strange thing is, I can’t connect with my husband, who sits upstairs, unless its via email or messaging.  I started this blog at his suggestion; he thought it would be good for me to write down my ideas and thoughts about political and world affairs.  I started it with that idea in mind, but it has sort of morphed into a whinging journal, an emotional catharsis; a platform to share my pain with the world and to help him (my husband) understand my feelings of desperation (that’s if he continues to read it).  When we talk face-to-face we end up fighting, neither of us listening properly, not really understanding what is required from the other; me desperate for his attention, him desperate for mine.  Both of us too exhausted, caught up in our own world of depression to really see the other.  I’m sure there are millions of couples out there in the same position.  I sometimes envy people with children ‘cos they’re too distracted by providing and caring for their kids they probably don’t have time to dwell on their own inadequacies as a person.

Anyway, now that I’ve got that off my chest I’m feeling better; here’s a photo of my cat, Popi.  She’s been a bit under the weather recently, but a trip to the vet and a jab of antibiotics and pain killer, hopefully she’ll be back to normal soon.

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I’m an arse…

What an arse I am.  I seem to shoot myself in the foot all the time.  I’ve been trying (half my life) to lose weight and eat healthier, not just to look better but also to feel better.  I try new ideas, plans etc. but it is my own short term desires which fuck me up.  How is that?  What kind of stupid death wish, shit life do I think I deserve?  Not a day goes by without something or someone making me feel shit (before you all start shouting, I know, no-one else can make me do anything, it is my own fucking brain screwing with me), and how I deal with is to make myself feel better with food or stuff.  Sometimes, something or someone doesn’t even have to do anything its just my fucking brain telling me I deserve this or that.  Take yesterday…

I was feeling a bit tired and run down from the week and decided to take Friday as a day off to recuperate.  I still had to get up early as my husband has to help me put on my adorable compression stockings and help fasten my bra (I’ve got a dodgy shoulder).  I had to pick up a parcel from the post-office so just faffed around until after 9:00am to let the traffic die down.  I also needed to pick up a few things from the shops.  Whilst waiting for 9:00 I had a hot lemon, ACV, ginger and honey drink (recently I’ve been trying to have this in the morning as I’ve heard its good for you); I was feeling relatively righteous.  9:00am came and I headed of out; I would have breakfast/lunch on my return.  I picked up my parcel and headed to Asda, I needed some fruit juice and I wanted to look for a cheap bread bin.

Once at Asda I had a quick look round the ladies clothes (as always) and managed to pick up a nice black and white stripey T-shirt, a bargain at £8.  The bread bin was OK, but I wasn’t too keen so I left it and went back to look for juice.  I also picked up some butter as I was planning to bake a banana cake with the banana’s that were rotting on my counter back at home.  Then I thought, “what can I have for breakfast”?  That’s when my mind went into overdrive…“toast, bacon, eggs, muffins, bagels…”.  It was like I’d been taken over by someone else; I was having a day off so it seemed only fair this day off extended to what I was eating…therefore I didn’t have to eat nutritionally, sensible food I could have whatever my heart desired.  My brain ran through my list of favourites in a millisecond and settled on bread products…I absolutely love bread, but what kind? Baguette, crusty white loaf, bagels… I’d decided I’d have Boursin with black pepper on a crusty baguette and headed to the cheese aisle, but horror of horrors, there was no Boursin.  Again, my brain ran through list of favourites but this time nothing stood out…so I thought “head for the bread aisle, something with jump out at you”.

At the bread aisle I just couldn’t think, everything looked appealing, so I thought “what have I not had in ages”?  Scottish plain bread!  Unfortunately, they don’t have any in Asda but they do have a close substitute, an Irish Batch.  That would do just the job; toasted with lashings of butter and bovril or as a sandwich with lashings of butter, cheese, bovril and garlic salt  (I opted for the sandwich).  Now this is when my brain well and truly fucked me over…“if you’re having this, you may as well have some of your favourite Aero chocolate” – not the minty or orange one, just the chocolate one, its like gold dust these days.  You’re right, I said and off I went to the chocolate aisle.  Now, I could have picked up one big bar and that would have been a bit naughty, but no, I picked up two.  What was my fucking brain thinking…or had it given up thinking entirely.  Was there another person living inside of me controlling my brain?  I don’t know anymore…all I know is I got home and made a cheese, bovril and garlic salt sandwich (it was delicious) and washed it down with a milky coffee and half a bar of Aero.

About an hour later the backlash started, my body was punishing me and my feeble  brain.  The aches and pains, the skin crawling sensation, restless legs, every molecule of my being felt shoogly, I felt headachey, my muscles ached; I felt ruddy awful.  I ended up having to lie down, but even then I still felt like shit.  The rest of the day was a washout, it would take a couple of hours and a couple of pain killers to recover.    This is what happens when I do not keep control of my brain and remind myself that my lipoedema and fibromyalgia are real and the consequences of eating without thinking are debilitating.  Was it worth it.  NO! Will I do it again? probably…YES.  That’s why I am an arse!!

Throw-back…

Exhausted.  Achy.  Feeling bloated.  Lethargic.  I could sleep for a week.

This week so far can be summed up, thus!

I’ve struggled, big time, this week.  It’s not been too hot, but I feel worn down by the heat somehow.  By the time I finished work today I was almost screaming out in pain.  Not the type of pain that is instant and excruciating, but the kind of pain that wears you down ‘cos its been around for weeks, gnawing at your psyche.  Its difficult to explain.  From the outside I’m a big, fat, lumbering old fart.  Nobody should have any sympathy for me, its all my own fault.  I’m fat because I eat too much (not true); I’m sure that’s what other people think.  That’s what one half of my own being thinks.  The other half doesn’t think, its too busy working to keep up the pretence.  The pretence that I’m alright.  The pretence that I’m coping, still able to function as a normal human being.  The pretence at being happy, content.  Somewhere in the middle of these two halves is a molecule of love, respect, compassion, sympathy, empathy … all the things I give to others relatively easily, but which I find difficult to give to myself.  I feel unworthy.

I don’t know if I understand love, respect, compassion etc. or should I say I’ve never felt love, respect, compassion etc. from anyone else.  I hear the words, but I don’t feel them, I don’t feel the emotion behind the words coming from anyone.  Is that normal?  Are they just words? Is that why I don’t know how to do it for myself.  Growing up I thought love was being given something you wanted, whether it was food, clothes or stuff; something other than the mundane.  Dinner was just dinner, but when I got my favourite meal (cauliflower cheese) it was given with love; I’d get cauliflower cheese on my birthday, but other than then it was a meal hardly ever had.  Take clothes, of course I had clothes when I was wee, but they were everyday clothes, hard-wearing and boring.  There were no pretty clothes; perhaps one item for best, but otherwise they had a purpose, to cover your ruddy body; not to be loved or to make you feel good.  Clothes were utility.  And stuff, I got stuff I needed for school, the occasional treat, but I never got the stuff I actually wanted; perhaps once, I did get a cassette recorder (see photo) one Christmas, which would get confiscated when I was naughty. I remember it being confiscated a few times, but I can’t think of anything I did, at that age (probably around 11 years), that was so naughty.  I ruddy loved that cassette recorder.  I think this was when I started to love things more than people…when I realised things didn’t let you down the same way people do.

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I don’t know if, how I am, how I think of myself and how I treat myself are a throw-back from my childhood, or as a result of an overactive, under-stimulated, depressive mind.  All I know is I feel sad, empty, lonely, angry, resentful and achy most of the time; I think living with Lipoedema and Fibromyalgia just adds to this ‘cos when I feel run down, from trying to function properly, my internal voice seems to ramp up its constant criticism of everything and everyone.  I wish I could find a way to switch it off.  I am hoping that by writing these things down it will help, but even then my little critical voice inside is still chirping away…

 

Massey, Moggies and more…

I’ve been a bit distracted the last couple of days as I’ve been putting together another blog.  ‘MasseyMoggies and More’…its just a bit of harmless fun.  As I only work morning, and my poor husband has to work all day, I occasionally send him email updates from home, pertaining to our beasts.  I thought they’d be quite interesting as a blog.

Also, its been a difficult couple of days, physically.  Work has been draining ‘cos I’m in pain and finding it difficult sitting typing for five hours.  Some temp jobs are a bit more varied but this one is really boring.  I’m in the Oncology dept. which is already a difficult specialty, but I’m not even doing real typing, just editing letters typed by voice recognition software; Winscribe®.  The system is a bit shit but then again there are so many different nationalities and accents its hard enough, as a human being, trying to figure out what they are saying.  In addition, the medical terminology, names of medications, patients names etc. just adds to the difficulty.  Some of what it writes is hilarious, its a shame we don’t have more time to enjoy it, but the pressure of work is almost unbearable.  They have reduced support staff to the bear minimum whilst at the same time increasing the clinic numbers and number of clinicians.  The only reason the Trust are moving over to Winscribe® is to save money.  Downgrading the secretaries role means they will be able to pay less and drop the banding.  Its a bloody disgrace what this government, and its lackeys are getting away with.

Unfortunately, the NHS is fucked.  This Tory government has taken this country for a ride; it continues to make the top 1% richer by making the poor pay for them.  I don’t know how they get away with it.  Well I do, the world is full of stupid people who act like sheep (following the herd) and are happy to live like mushrooms (left in the dark and fed shit)!  Its quite depressing really.  I’m finding it increasingly difficult to watch or read the news; even though the mainstream media (MSM) are not reporting the truth.  There is however a lot of stuff online, but it is more depressing knowing the truth is being covered up and we are being manipulated; you almost want to believe the sanitised, white wash of the MSM because it is less disheartening.  Either way it really fucks with your psyche; to have no voice, no power and no way of changing anything is quite crippling.  I keep racking my brains to find ways of fighting back or to accept the inevitable, but I feel caught between two extremes.  I’ve always felt my thoughts are a little schizophrenic and exhausting.  

The only remedy I’ve been able to come up with so far, is to become a member of the Labour Party and support Corbyn’s vision of a more compassionate future.  Where utilities are back in public ownership and the wealth is shared.

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My Lipoedema story…

Recently, I’ve been looking at other blogs talking about lipoedema (and to a lesser extent, fibromyalgia), there is not much out there.  A few perhaps, focussing on liposuction as the answer to the disease.  If you are still young (and loaded) this seems like a viable option, unfortunately, I am neither of these.  Also, the procedure seems more painful than the condition itself.  I wonder, if I were still young, whether I would pursue this option?  Who knows.

I first heard about lipoedema after a chance visit to the doctors about another problem; I’d going on and off about aches and pains for many years, particularly coccyx pain and leg pain and swelling.  I’m not sure what triggered the coccyx pain, it feels like its been there for many years, and one day I just noticed it more.  I was referred for an MRI but couldn’t go through with it, maybe its because I’m big, but I just couldn’t go into that tube!  I find sitting down for long periods of time quite painful, especially at work, which can be very exhausting.  I now take one Zapain® (30mg/500mg Codeine/Paracetamol) before I set off for work, so that it has time to work before I get there, and another at my desk with my morning coffee.  Although you will hear more about my bum pain, I will focus on my legs and lipoedema for the moment.

I thought the leg pain and swelling was the result of two seperate accidents, the first happened at work when I was in my early twenties, a door clipped the back of my heel and cut right through.  At the time, I remember going to hospital because it was bleeding, I don’t know if I got stitches but I  remember being off work for about a week or so because I couldn’t walk.  It wasn’t until much later that I realised this may have caused some longterm vascular damage.  (This was way before the compensation culture of today, which is a shame, ‘cos I could really have done with a £10k payout then).  The second accident happened about ten years ago, I fell down the steps at the front of my house and knocked my left shin quite badly.  I didn’t need hospital treatment but went to the doctor a few weeks later due to a red patch of skin, swelling and pain which didn’t heal well.  He thought it was cellulitis and gave me antibiotics, which helped a little but never really resolved the problem.  I kept going back and all I got were more antibiotics but the area still remained discoloured and my leg would flare up episodically.  I had many investigations over the years, taken tons of antibiotics (multiple GP’s thought it was cellulitis); I’ve seen dermatologist’s, had DVT investigations and nothing has helped longterm.  I thought these two events, coupled with my being overweight had weakened  my leg, so much so, that every bump or scrape created a lot of pain; even the slightest touch can be excruciating (like when my big cat walks over my legs).

In frustration, I gave up going to the GP as each time I went they didn’t listen to me, they seemed fixated on my weight, high-blood pressure, whether I was diabetic, or had heart problems; (I know now this is because they get more money for patients on the Diabetic Register or the Heart Disease Register).  I tried to accept my leg problems as something I would have to live with, until I was able to lose weight.  Over the years I’ve tried dieting, almost starving myself (maybe not quite starving, a little bit of added drama goes a long way); I’ve tried exercising which was difficult because I found moving tough, even walking was a struggle as my legs felt like lead.  I never once thought my physical health problems were anything other than my own failure at not being able to lose weight.  As I became older, and menopausal, my symptoms got worse.  I was getting bigger, more depressed and my pain was becoming increasingly more difficult to manage.  I was on a lot of pain killers (Ibuprofen and Co-codamol) and was worried about the long term affects of taking these.  In desperation, I went back to my GP’s but once again they ignored the leg problems and focussed on mood.  I was tried on a number of antidepressants which they said would also help with pain; I dutifully went along with their suggestions after all they were the experts.

Fast forward a few years and my leg and weight problems still persisted, my depression was rooted in my weight issues, particularly my fat, useless legs.  I’d berate myself for my dieting failures, despite trying every mad-cap idea I’d read about.  Until, once again I went back to my GP, this time focussing on my legs; in particular the ugly discoloured patch and the swelling. I was determined and thought if I could get this sorted out, once and for all, I could undertake a diet and exercise regime which could help me lose the weight.  How strange, this time he commented on my unusually fat legs that looked swollen, like lymphoedema, but there was no pitting.  I can’t remember much else about the consultation, my mind was fixating on lymphoedema as a possible diagnosis, I didn’t know much about it so was keen to get home and investigate.

This was about two years ago, my research eventually brought up lipoedema, this was the first time I had ever heard of this condition.  I became frantic, trying to find out more; I spent hours trawling the internet desperate to find out if this is was what I had, and if so, how to cure it.  I scoured old photographs, looking for pictures of my legs to compare with the photos I’d seen online.  Unfortunately, like most big women, I’d never liked getting my photo taken so there were very few, less so of my legs.   I did eventually find a couple of holiday snaps, of me in my twenties, but I wasn’t quite sure if they showed lipoedema.  My legs were unmistakably trunk like, just like the photos online.  My upper body was small in comparison to my legs,  just like I’d read.  But I couldn’t be sure.  I looked at old photos of my mum, granny, grandma to see if they had it; I knew my mum didn’t and her mum didn’t look like she did either, but my grandma, my dad’s mum; she was a big lady, but her legs didn’t look particularly like lipoedema, just swollen with a touch of lymphedema, perhaps.  I do remember however, she wore support stockings all the time and seemed to struggle to walk.

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I became obsessed, I looked at everybody’s legs, searching to find others like me and then  comparing their legs with mine.  Constantly thinking, ‘did I, didn’t I’.  Was it just wishful thinking on my part, would having an answer, a diagnosis validate me?  Those first few weeks were very difficult, I both wanted to have lipoedema and not have it.  To have it sent me into a spiral of depression; knowing it was incurable, my dream of having the perfect legs was now well and truly unobtainable, but at least whatever was going on wasn’t all my fault.  I felt vindicated.  But what if I didn’t have it, my struggle with weight, dieting, depression stretched out endlessly before me.  I would continue to be a fucking failure and it would be all my fault.

I’ve known about lipoedema for a couple of years now, and this may sound strange but, it feels like it was borne out of my own imagination, a fantasy I invented as a way of accepting my failure to lose weight.  I feel like this because I don’t feel my having this condition has been fully acknowledged by any medical professional I’ve encountered.  Usually, when I say I’ve got lipoedema they correct me saying lymphoedema, and when I repeat lipoedema they just brush it off,  ignore me, as if I’ve made the mistake.  After all I’m  fat, and by association stupid, I could not possibly be as knowledgeable as them; I am merely a woman.  They are generally dismissive and disinterested; so much for the caring profession, eh!  I had to almost beg for a referral to the Lymphoedema service.  They did refer me to see a rheumatologist, due to the aches and pains, who diagnosed fibromyalgia.  The nurse in the Lymphoedema clinic was fabulous, she diagnosed lipoedema, measured me for my first pair of compression stockings but more than that, she listened.  At last I’d found a person to talk to about this, whose eyes didn’t glaze over; a perceptible weight had been lifted from my shoulder at last.  I felt re-born.  However, this feeling didn’t last long, it took a while to get to grips with the compression stockings, they are a bugger to put on but thankfully everyday my loving, patient husband helps me with them.  They are ugly and make me hot, but they stop my legs from aching too badly; I only realise how much I need them if I spend a day without them.  I still struggle with my weight, I have aches and pains every day, which are exacerbated by the things I eat, I am fearful for the future ‘cos as I get older I worry that my mobility (which is already affected) will get worse.  Although I now have a diagnosis for my problems I realise I am still a long way off from acceptance, not only from the medical profession, from friends, family, but most of all myself and I am still looking for a goddam cure.