New Recipe

Don’t get too excited from the title because it’s just a recipe for Jam, but breakfast is my favourite meal of the day so Jam is important to me😉

A few feet away from my house is a small patch of neglected ground, on which grows a Damson tree.  I think Damsons are native to Britain, so apologies if you don’t get Damsons in America, NZ, Australia etc, but I think they are also grown in some parts of Europe.  Damsons are a member of the plum family, so if for some reason you’re avoiding stone fruits avoid Damsons (there is zero evidence for any stone fruit, or any other fruit for that matter, being high in histamine so I eat them and love them!)

Damsons are at their best in September and this tree was heaving with fruit, so I picked over 4lbs free, gratis and for nothing :-)  I added some sugar, boiled for 10 mins, and made 10 pots of gorgeous tart, sweet, Jam – recipe on the Jams & Sauces page of my blog.

Damson jam recipe
Damson jam always reminds me of my late Nanna, who used to make it every year.  She always left the odd stone in (as I do) because it does give the jam more flavour and as a kid I felt cheated if I didn’t find one.  Damson jam would also be a good base for a meat or fish sauce as it’s both tangy and sweet.

While I’m on the subject of food, Elderberries are high in Quercetin which is a known mast cell stabilizer and I didn’t realize that Tesco stock Sambucol which is an Elderberry concentrated drink with added Vitamin C (another mast cell stabilizer).  It’s expensive at £9 per bottle, but if like me you shop regularly at Tesco you can use your Vouchers towards the expense.

I’ve also discovered a couple of items from the Gosh! range which are suitable for a low histamine diet and are vegetarian – the Beetroot, Kale & Quinoa Burgers, and the Mixed Seed & Quinoa Bakes both of which I’ve tried and are tasty.  Gosh! foods are free from major allergens, including gluten, eggs, milk, soya, nuts and peanuts so are pretty cutting edge as pre-prepared foods go.  They also add the least amount of additives and preservatives that they can.  Available from Tesco or see the Gosh! website for stockists.

I’ve been trying out 2 or 3 new main course recipes the past few weeks, but haven’t perfected them yet.  One of the ones I tried was for a Quorn stew which had nothing but 5 star reviews online.  I tried it and the carrots were raw, the gravy didn’t thicken and the dumplings didn’t rise despite following the recipe faithfully.  I’ve no idea why some recipes don’t work well, or why other people rave about them and I find them tasteless or difficult to make, but that’s the way the cookie crumbles frustrating as it is.  If any of the new meals I’m trying work out I’ll let you know.

Insurance saga update

I wrote in a recent post about a nightmare I’ve been having with a Permanent Health Insurance policy I’m claiming on.  I’ve been trying to sort it since May, when my insurers stopped paying me 1/3 of my monthly income.  You have to go through the insurance company’s formal complaints procedure, which I did, and they told me last month that they were entitled to reduce my money and that was an end to the matter.

So I referred the case to the Financial Ombudsman’s Service.  The last time I had to complain to the FOS about my insurers was back in 2010, it took 2 years to resolve and this new complaint looked like it was going the same way after the Adjudicator assigned to my case refused to even return my phone calls or emails.

However, I wasn’t about to be put through 2 years of hell a second time so in desperation I emailed the Chief Ombudsman herself and within 48 hours a different and brilliant Adjudicator took over the handling of my case.  He couldn’t have been more helpful or more on my side.

He immediately got in touch with my insurers and asked them for their facts on my case.  In the meantime I had to put all my paperwork together and email that to him, which took 3½ hours.  Even though he reassured me that things in the FOS had changed since 2010 and that the process would be much faster, I still expected it not to be resolved until 2017 particularly as they had to give my insurers 3 months to respond to their request for information and my insurers are very good at leaving it the entire 3 months.

However, this afternoon I received a phone call from the Adjudicator with some fabulous news.  My insurers have agreed they’ve made a mistake in reducing my money and it will be re-instated in full asap.  Not only that but I’m to be paid £100 compensation for all the stress, which is brilliant being as though I’ve racked up £52 in planned overdraft charges at the bank as I haven’t had enough money to live on (I dread to think what the charges for an unplanned overdraft would be!).

The nice Adjudicator also said that if, at any time in the future, my insurers play silly buggers for a 3rd time to simply email him directly and he’ll get on the case.  Which is re-assuring because I know my insurance company would dearly love to stop paying me what I’m owed.

I’m so relieved!  It’s gone chilly here in the north of England as Autumn bites but I was worried sick about putting my central heating on as I couldn’t afford any large bills until this was sorted out.

2-0 to the little disabled country bumpkin, who has nothing but tenacity and a very big mouth on her side🙂

Weekly roundup

Even though my holiday finished last Friday I’ve actually had a more relaxing week this week than when I was supposed to be resting, even though not everything has gone to plan.

I thought my leaking loo would just be a washer, but sadly it’s turned out not to be the case.  So, having taken the cistern apart, I decided I couldn’t fix it and have had to claim on my insurance and they’re sending a plumber out on Tuesday morning.

Speaking of insurance, the Adjudicator from the Financial Ombudsman’s office who is dealing with my new PHI complaint rang me on Thursday.  He said he agrees totally that my insurers should not be reducing my money and he’s already contacted them to ask them to explain why they’ve done so.  He’s hopeful they will reply some time this week.  He’s such a nice chap, keeps me fully informed of what’s happening and is obviously on my side – such a huge difference to my last complaint in 2011 which was a total nightmare.  So I’m more hopeful the issue can be resolved quickly and my money re-instated (famous last words!).

I’m still plodding on with my ESA renewal forms.  I have 6 letters from consultants as my “supporting evidence” so if that’s not enough I give up.  I haven’t even started on the actual form yet though, as it’s taken all week to get the medical evidence together and write the bit about “how my illnesses affect me” which runs to 4 typed pages!

I had a bit of a crisis on Tuesday morning.  Bertie woke unable to put any weight on his front leg.  After a bit of deduction I decided he’d sprained/strained his front “knee”, so gave him some Calpol (at a dose recommended by the Vet, he can’t take anti-inflammatories like Metacam as they make him sick), strapped it up with a compression bandage and only gave him short walks for 2 days.  Thankfully it’s much improved and he’s no longer limping.

I’ve lost 4 followers after posting my Scarlet Woman piece.  I expected it, as women don’t like to hear that it’s the man’s fault when he strays.  Women like to blame the Other Woman even if that makes absolutely no sense.  It’s like having your house burgled and being blamed for leaving the door open.  You should be able to leave the sodding door and every window you possess open without some random stranger pinching your stuff.  Burglary is always the burglar’s fault.  Just like infidelity is always the married cheater’s fault, even if the person they strayed with came on to them.

My weekly roundup is a day early this week.  Today (Saturday) I was supposed to be at a wildlife photography workshop.  I can’t normally afford to go on these things, but someone dropped out and I was offered a half-price ticket.   But yesterday The Curse arrived and I started with a dreadful migraine and awful back pain.  I got hardly a wink of sleep last night and still had my migraine this morning although it’s thankfully fading now.  I’ve also had the worst hormone-related back pain I think I’ve ever experienced, with shooting burning nerve pain in my left hip which stabs me every minute or so.  I can’t sit, stand or lie without awful pain so have had to cancel.  Bloody typical.  They’re holding a 2nd workshop tomorrow and have held a place for me, which is really kind, but I have no idea how I’ll feel in the morning so will just have to play it by ear.

As I’ve mentioned in previous blog posts, I’ve tried doing some portrait pictures this year having never photographed people before and not possessing any proper studio lighting or equipment (I don’t even have a proper flash for my camera!). I’ll leave you with ‘Ol’ Blue Eyes’, which I’ve entered in a competition this week – won’t find out if it did any good for some time yet but will keep you posted.


The Scarlet Woman

This post is totally non-health related but covers as issue which makes my blood boil.  Yesterday saw the announcement of the divorce of Angelina Jolie and Brad Pitt.  I couldn’t care less – their private life is their own business and anything written about the split in the media is bollocks.  The only people who know what goes on in a marriage are the husband and wife and I’m fairly sure they’re not sharing the details of their relationship turmoil with the Daily Tribune.

The thing that’s got my goat has been the reaction of other people to the split.  Jennifer Anniston’s best mate Chelsea Handler has ranted about Angelina, calling her a “lunatic”.  In the past she’s also called her a “home wrecker” and a c*** (I usually just say swear words, but refuse to ever use ones which are solely female-centric).    I don’t know who Chelsea Handler is as I’ve never heard of her but am assuming she’s some kind of comedienne, so I’ll let her other comments go because they were just used to get a laugh.  But, intended humour or not, some things need to be picked up on and the blame of women is one of them.

When a married man shags another woman, the Other Woman gets the blame.  Always.  What the hell is that about?  When a married man strays the only person to blame is the married man.  I don’t care if the Other Woman strips naked and offers to lick whipped cream off his willy he should say “no thanks I’m married and I love my wife”.  End of.  When I’m hormonal and I’m cut up by another driver I literally want to get out of the car and batter them with an iron bar – but I don’t, because I’m a grown up with a modicum of self-restraint.

When Angelina Jolie got together with Brad Pitt she was single.  She could have sex with whomever she liked.  Brad, on the other hand, was married.  He had made vows to Jennifer Anniston to “forsake all others and keep me only unto thee”.   He broke his promise, Angelina didn’t break it for him.

The other accusation aimed at women who sleep with married men is that they “stole” someone’s husband.  What is he, exactly?   A human being with a will of his own or a fucking handbag?!  You can’t steal a person.  Well, you can, but it’s called human trafficking.

Girls who sleep with married men have historically been called Scarlet Women and in times past a large red letter ‘S’ was pinned to their dress.  The married man involved was called…………well, here’s the thing, there isn’t a derogatory name for a married man who cheats on his wife.  Which tells you everything you need to know about the skewed way we look at male infidelity.

Years ago, women who slept with married men had all their hair cut off, were painted with sticky tar then covered in chicken feathers.  They were then shunned by their entire village.  Nothing happened to the man, who just carried on being married and going about his life as usual.  And while the tarring & feathering may have stopped, the blame of women for men’s appalling behaviour has not.

As recently as the 1970s, Irish girls who got pregnant out of wedlock were placed indefinitely in Workhouses and had their child adopted without their consent.  No mention was ever made of the man who got her in that position.  He wasn’t locked up.  He didn’t have to do forced labour.  He wasn’t shunned by society.  It was almost as if the child had arrived by immaculate conception without intervention by the male species.

Women today think they have equality but nothing could be further from the truth.  Women are still blamed for being sexual beings and men’s appalling sexual behaviour is still excused.   Gender bias is alive and kicking.  And the most appalling part of it all, is that it’s re-enforced by women.  It’s women who blame the Other Woman in an affair and women who makes excuses for the cruel, lying, cheating behaviour of the man.  And to be honest, when that happens I’m ashamed to be female.

New Symptom

I do most of my computer work first thing in a morning, as that’s the only time my brain is clear enough to fully concentrate.  I’m a trained touch typist and hold my thumbs in the air over the space bar when I type.  Earlier on this year, I noticed that my right thumb was trembling and when my hand was hovering over the keyboard my whole hand was kind’ve vibrating (that’s Bertie in the background woofing on the video, he loves the sound of his own voice!).

My heart sank to my boots.  My maternal Grandmother and my Mum both have a Benign Essential Tremor, often an inherited condition due to a faulty gene.  If you have a parent with an Essential Tremor you have a 50% chance of developing one yourself.  Of course it would be me – it couldn’t be my bloody Brother could it, who has escaped every genetic disease in the family while I’ve inherited the sodding lot.

I asked my Mum when her tremor started and she said about mid fifties.  I told her mine seems to be worse first thing in the morning and she confirmed that’s how hers started too.  Fuck-a-doodle-do.  Mum’s tremor is so bad now that she can’t write at all and struggles to eat.  On the plus side, it does just affect her hands – it could be worse, as Essential Tremors can affect any part of the body including the head and voice.

I’m starting to think that God has it in for me.  My passion, and what gets me through the days apart from my Dog, is my photography.  Due to my severe eye floaters, I already struggle with my vision especially editing my shots on the computer.  Having a tremor will be the last straw – how can I take sharp photos if my hands are trembling?

I’ve made an appointment to see a GP in October.  I’d love to see my own GP, who knows my Mum and my 22 year health history, but there is nothing available with her for the next 2 months.  As it is, I’m seeing a doctor I don’t know from Adam and still having to wait 4 weeks!

There is no cure or effective treatment for an Essential Tremor.  There are a couple of drugs to try, both of which made my Mum faint (they lower blood pressure and mine is already low).  In any event, I’ve tried the first one Propanolol for my tachycardia (before I knew it was down to MCAD) and couldn’t tolerate it.  You can also have deep brain stimulation but I’m not sure I fancy the risk of stroke, weakness and loss of speech which goes along with it.  Alcohol can improve tremor, which was my Mum’s original excuse for starting to drink.  Having an alcoholic parent I’m not sure it’s something I’d try, even if I could tolerate booze (which I can’t).

So it looks like I’m going to have yet another condition to deal with.  I wonder if I can get into the Guiness Book of World Records for the person to have the most medical conditions at any one time?  So far it’s 9 and counting: ME, EDS, MCAD, Scoliosis, Endometriosis, Adenomyosis, Migraine disorder, Peripheral neuropathy and now Essential Tremor.  I only need another 3 and I’ve have an entire football team of health problems – my very own Manchester United of the medical world.  I wish I had Man Utd’s finances!

Weekly roundup

I’m into the second week of my staycation and so far there hasn’t been one iota of holidaying going on.  They say it’s a good job you can’t see into the future and they’re right because if I’d known how this week was going to pan out I would have stopped in bed with the duvet over my head.  This is a long post – you might need a brew😉

Tuesday night I’d agreed to do a 2 hour presentation to the new Beginner’s class at my Camera Club because the chap who was meant to do it is in hospital with a collapsed spine.  Dave has been really good to me (he’s the one who gave me his £500 printer for nothing because he knew I couldn’t afford one) plus lost his wife to cancer just a few months ago, so even though I was technically on holiday of course I agreed to help.  I spent the whole day last Thursday putting together my presentation and the whole of Tuesday this week practising my speech.  I’d planned the day carefully to maximise my energy levels and it included 2 hours of complete rest from 3.30-5.30pm.  I’d just gotten into bed, however, when the phone went and I could see it was the Financial Ombudsman’s Service.  I’d been waiting to hear from them for 3 months, so of course I had to pick up.  I then spent the next hour on the blower and came off shocked, dazed and stressed to the eyeballs – resting after that was out of the question.  Finding out the Adjudicator’s recommendation in 2012 wasn’t legally binding sent me reeling, so then trying to focus on my presentation was nigh on impossible.  The fact it went as well as it did was pure luck and down to all the practising I’d done earlier on in the day.  Needless to say I barely slept a wink that night.

Wednesday I’d again agreed to do a presentation at Camera Club for Dave, though this time just 30 minutes.  I hadn’t prepared nearly as well and had planned on spending Weds going over my talk but instead spent the entire morning putting together the paperwork needed for my new Ombudsman’s complaint.  My cleaner is here on a Weds from 12noon to 3pm and while dodging the duster and hoover I had to make and eat my dinner, take the dog out and mount 3 prints for an exhibition my Camera Club are putting on in town which had to be handed in that night.  Again I’d planned on resting between 3.30-5.30pm but instead had to spend those two hours going over my talk which I hadn’t practised at all.  By the time I dropped the dog off at Mum’s I was dizzy from exhaustion, starting with a migraine and felt sick to my stomach.  I somehow stumbled through the presentation and can’t even remember the drive home in a torrential summer storm with flash flooding and forked lightning!

Thursday, with the presentations done, I thought I’d finally be able to start my holiday but of course my migraine was in full swing by then so even though it was 25C outside I spent the day in bed with the curtains closed feeling like rats were gnawing the inside of my skull.  Another day gone.

Friday morning I got up, went into the Utility room to feed Bertie and heard the ominous sound of dripping water.  My toilet was leaking and there was a huge pool quickly spreading across the floor.   I isolated the water and drained the toilet tank but still haven’t had the energy to fix it yet.  Looking on the bright side it’s a good job I couldn’t afford to holiday abroad for a fortnight, because if I had I would have come back to a completely flooded house!   An hour later I head the post plop through my letter box and spotted a dreaded brown envelope from the Department for Work & Pensions on my door mat.  It was my Employment & Support Allowance renewal forms (ESA is the welfare benefit given to people who are unable to work due to illness and, although I also have my PHi insurance, I still have to claim ESA which is deducted from the money paid to me by the insurance company).  The last time I claimed ESA the Government found me fit for “some kind of work” and said that in 12 months time I’d be in full employment and they’d stop my benefit.  Hurrah I’m cured!!!  I applied for a “mandatory reconsideration” then had to spend 6 horrendously stressful months persuading them that I don’t have a curable disease and won’t be returning to full-time work any time soon – in the end I had to get my local Member of Parliament involved which finally swung the decision.  Now I have to do the whole thing over again – I can’t wait.  Friday aft I had to go into town for my special bread and some food for Bertie.  I called in to see my folks who were bickering and obviously stressed and I ended up on the phone for a whole hour sorting out some important stuff to do with their finances which wouldn’t wait another week for my “holiday” to finish.  As I got up from the dining room chair to leave I felt something ping in my lower back and a burning, shooting pain radiate through my pelvis.  The ligaments around my SI joint are well dodgy and I think I’ve torn the left one again, so am now in constant pain and couldn’t get comfy in bed last night so didn’t sleep – look on the bright side Jak, you can now barely fucking walk so at least you’ll get some rest!

I’m at the stage where I just find the whole thing hilarious – it’s either that or you might as well just put me in a straight jacket and cart me off to the nearest sanitorium.  At least I’d get to chill in the nut house😉

This week is the final one of my holidays, but as I only have 3 weeks to send back my ESA forms I will have to work endlessly on those instead.  You have to be very careful what you say and have to do all sorts of reading up beforehand to tailor your answers to fit the descriptors in order to qualify for the benefit (there are some excellent guides on the Benefit & Work website though they cost you £20).  Even then it’s a totally arbitrary system.  My best mate and I have the same disease, had our last renewals at the same time and read each others forms – our answers were almost identical, we produced similar medical evidence from our doctors, yet she was placed straight in the Support Group and I was placed in the Work Group, despite the fact we both agree I’m actually more disabled than she is because of my Ehlers-Danlos (which she doesn’t have).  I’m convinced it just depends who reads your form on the day and how jaded and sceptical they are.

Oh well, it’s only 3 months til Christmas – maybe my next bash at a holiday will be more successful.

I do have two bits of great news though.  The first is that, after 3 months of trying, I finally got a full refund on my Rod Stewart tickets.   Under the Consumer Rights Act 2015 the seats weren’t “as described” when I bought them, so I felt sure I was legally entitled to receive my money back.   I initially complained to the ticket vendor, who said they’d pass it on to the Promoters.  The Promoters just ignored me.  I contacted my bank to try and get a charge-back on my credit card but they found a legal loophole to slip out of to make sure they weren’t liable.  I contacted the ticket vendor again, who passed my complaint on to the Promoters again, who eventually offered me 2 free tickets to another concert.  I explained the last gig I went to was in 1987, my Dad had Alzheimer’s and we weren’t planning on ever going to another concert.  They said take it or leave it.  I then contacted Consumer Direct, a free government-backed charity who offer legal consumer advice, who advised me to get in touch with STAR the ticket vendor’s trade body.  They were brilliant and within a week the Promoters had got back in touch and offered me a full refund.  Result :-)  Three months of stress and chasing my tail though, when it was legally a straight-forward case that should have been sorted out at the start.

My second piece of brilliant news is that Bertie is finally back to his normal weight.  He lost over half a kilo back in June, which is a lot for a little dog.  He was wormed and all his blood work was fine so it was a bit of a mystery, though I personally still suspect pancreatitis to which Mini Schnauzers are prone even though his pancreatic test was ok.  Having said all that, dogs with an attack of pancreatitis often vomit and are off their food, neither of which applied to Bert.  We still don’t know why he’s been ill, but after months of being over-fed with no luck he’s finally gained the weight back again out of the blue in the past 2 weeks, and is now on regular food portions.  Yayyyy🙂


The insurance saga

I took out a Permanent Health Insurance policy (PHi) in my early twenties, which would provide me with a proportion of my salary if I were ever too unwell to work.  If I hadn’t had this policy I would absolutely have lost my home when I got sick, because I don’t have a spouse’s income to rely on and state welfare payments like housing benefit are only given to people in rented accommodation not to those who own their homes (even if it’s the bank who actually owns it and you have a ginormous mortgage).

I started claiming on the policy in 1994 and it paid out without any problems until 2010, when all out of the blue the Insurance company wrote and said they’d been overpaying me and were reducing my weekly income by 1/3.  I can barely manage on the full amount so you can imagine my desperation.  To cut a very long story short, I referred the issue to the Financial Ombudsman Service (FOS).  For those outside the UK, the FOS is a regulatory body set up by the Government to help protect Consumers from unscrupulous and illegal business practices.  It consists of a team of Adjudicators who initially look at your case and try to resolve it.  If it can’t be resolved they refer it to the Chief Ombudsman.  The case took two horrendously stressful years to sort out but thankfully the FO Adjudicator ruled in my favour, her recommendation was agreed by my Insurers and my money was re-instated in full.

I was under the impression that this Financial Ombudsman’s Service decision was legally binding so thought the matter had been put to bed once and for all.  Think again Jak.

Since 2012 my insurers have been paying me what I’m owed, but in May this year all out of the blue I received a letter to say they had been overpaying me and were reducing my income by 1/3.  You have got to be freakin kidding me.

I wrote and told them that this matter had been settled by the FOS back in 2012 and, as this decision was legally binding they had to re-instate my money pronto.  They declined, so I had to start their formal complaints procedure.  Four months down the line and they are still “looking into it” despite the fact there is nothing to look into.

I contacted the FOS in June to ask their advice on the latest saga and they have been useless, ignoring my email and telephone messages.  Last week, in absolute desperation and already overdrawn at the bank, I found the email address of the Chief Ombudsman online and emailed her, outlining my case and begging for help.  Although I didn’t receive a reply, it must have reached her because on Tuesday I received a phone call from one of the Adjudicators apologising for the delay in answering my correspondence and offering to go over my case.

I was mortified to learn that the Adjudication back in 2012 is not legally binding.  Only an actual Chief Ombudsman’s Decision is legally binding and, as both the insurers and I had agreed with the Adjudicator’s recommendations, my case hadn’t had to go to the Chief Ombudsman.  In addition, the Adjudicator’s recommendation isn’t forward thinking – in other words it only works up to the date of the agreement between the parties.  My insurers could have changed their minds the week after and I would have had to start the process all over again.  It’s fucking outrageous and basically means an Adjudicator’s decision isn’t worth the paper it’s written on.

Because the previous FOS decision isn’t legally binding I can’t enforce it through the Courts, so I’ve had to make a totally new complaint and start the process all over again.  It took me 3½ hours Wednesday morning to gather all my paperwork together and email it to the Adjudicator (thankfully I still had most of the relevant documents scanned and saved on my laptop from last time), but there is no guarantee that this decision will go in my favour and I have no clue how long the process will take.

The stress of the 2010-2012 case was what caused my Mast Cell Disease to explode – I’d never had anaphylaxis before in my life until then.  God knows what’s going to happen this time as my health is much more precarious these days, not to mention the fact I’m now going through peri-menopause and have the added stress of caring for my parents.

I simply can’t believe I’m having to go through this a second time.  As if life with 3 exhausting, painful and crippling diseases isn’t hard enough these fuckers are trying to plunge me into poverty, yet are still happy to take my premiums every  month thank you very much.  Wish me luck, my financial future depends on the next few months.