Weekly roundup

As we’re now in December I turned my Christmas lights on this week.  I don’t usually have any outside lights, as I don’t have the energy to put them up or take them down, but I spotted a cheap pre-lit Cherry tree in B&M which just had to be plugged in and couldn’t resist buying it.  It looks similar to this and is really pretty in my miniscule front garden:

My cleaner is still off sick and has no idea when she’ll be back at work.  I have to ask myself how long I can leave the situation before letting her go and finding someone else (good luck with that in December Jak!).  The thing with backs is that once they’ve been damaged they tend to never be the same again, so how will she cope with a very physically demanding job?  In my last Weekly Roundup I mentioned that I find cleaning the car myself almost impossible and one of my lovely readers asked me why on earth I need to wash the car.  I don’t wash the outside, I go through a drive-in, but when you live in the countryside and own a dog this is the reason you need the inside regularly cleaned😉

Bertie regularly has half a forest stuck in his fur then shakes himself and the mud splattered up the car door took 3 goes with a scrubbing brush to get off!  More than anything, the smell of wet muddy dog is enough to knock you sideways!

I was in tears on Tuesday and it takes a lot to make me cry.  You’ve all heard me complain about the sodding dog on the farm next door barking at all hours of the day and night, but it’s not the dog’s fault.  It’s treated appallingly, not given any attention or affection, and left on its own for hours on end.  In 2014 I reported the owner to the RSPCA for tying the dog’s muzzle with wire – it was nipping the heels of the cows it was herding so its muzzle was taped shut.  The problem is, dogs don’t sweat like we do and have to pant to cool down.  In addition, one of its front paws was being put through its collar and it was being made to hobble around on 3 legs.  The RSPCA inspector visited them and the farmer pleaded ignorance saying he had no idea this was abusing the dog (is he having a fucking laugh?!).  That was 2 years ago and the dog is still regularly having its leg put through its collar for reasons I can’t work out.  If it’s to stop it running off it’s not working, because this week I found it hobbling ¼ of a mile up the village.  I was furious and called the dog over to me, took a photo for evidence, then undid its collar and freed its leg.  I then, once again, reported the cruelty to the RSPCA.  The dog is abused on a daily basis – I’ve seen it kicked, hit and strangled.   A beautiful Border Collie, highly intelligent and extremely affectionate.  I came home and bawled my eyes out, imagining someone treating my beloved Bert that way.  I’ll let you know what the outcome is – at least this time the farmer can’t plead ignorance as he was told in 2014 that this treatment of the dog is cruel.

Another lovely reader wrote in and told me that the C5 programme I mentioned this week is now available on Catch up here for anyone in the UK who missed it.

I had a bit of a mishap on Thursday.  At 9pm I went downstairs to turn all the lights off, missed my footing and fell down my wooden staircase.  My wrist is proper sore and still bandaged up (don’t panic, it’s not broken just sprained).  Ouch!  Although I didn’t actually say “ouch” at the time.  No, the air was blue with goddamn-motherfucking-swear-words.  The worst of it all was that in trying to save myself I ripped the pretty Christmas garland wrapped round the bannister off and broke it.  Bugger!

In this situation, the first thing I did was slap on some Arnica cream to help with the bruising, then a compression bandage to help with the swelling.  You’re supposed to ice these kinds of injuries but it was late and I was ready for bed so I didn’t bother.  The weird part was that the next day other parts of my body were itching like mad.  I just thought I was producing histamine in response to the trauma of the accident, so went about my day as usual.  It was only when I got undressed to get in the bath that night that I realized the parts of my body that were itching were actually injured!  I’d bruised my hip and taken the skin off various other areas.  Bizarre that I didn’t feel pain.  The injury sites itched instead, which is a peculiar response to being hurt.  My wrist doesn’t itch though.  No, it hurts like a son-of-a-bloody-bitch😉

As Christmas is heading for us like a runaway horse, look out for a post this week on how I survive the holidays.  I used to try and do Christmas like a healthy person, then relapse and be in bed til March.  Something had to give and several years ago I put my foot down and said enough is enough.  We still celebrate but it’s no longer stressful or exhausting and doesn’t culminate with me ending up in a coma.

Our diseases on the telly!

I saw a trailer in the week for a programme which featured a girl who was “allergic to everything”.  Things like that always wave a huge red flag for me so I decided to watch it.  It focused on 3 young adults, one who slept constantly who was finally diagnosed with Kleine Levin Syndrome, one who was “allergic to everything” and one who “had the body of a 90 year old”.

As I watched the story of the allergic girl unfold I thought “OMG, I must get in touch with her – she has MCAS!”  The fact she was also a professional gymnast, and clearly hypermobile, was the icing on the cake.  She’d been hospitalized over 40 times in 3 years with severe anaphylactic reactions, yet extensive immune and allergy testing had shown no reason for her symptoms – sound familiar?!  However I had no need to contact her, as at the end of the programme she saw a Haematologist in Leicester who diagnosed her with MCAS.  The fact she actually obtained an MCAS diagnosis in the UK was staggering.  Hurrahhhh🙂

The third girl featured had had problems from childhood, initially mild then all of a sudden severe.  Her joints were severely hypermobile and, like me, she was initially diagnosed with Hypermobility Syndrome.  But she was far too unwell for that diagnosis, eventually ending up in a wheelchair and having blackouts and seizures.  Her family did some research and her Mum thought she fitted the diagnostic criteria for EDS, but there were no experts where they lived in Northern Ireland so they had to fly to London to the hypermobility clinic at St Johns & Elizabeth where she was indeed diagnosed with H-EDS.  She also saw Prof Matthias who diagnosed her with POTS which had been the reason for her seizures.

It was heartening to see both these girls diagnosed at a fairly young age, though they and their families had been to hell and back for several years first with none of the doctors they saw having a clue what was going on – a familiar story for most of us I would imagine.

The programme was badly titled ‘the boy who can’t stay awake’ and was on Channel 5.  I’ve looked online and it doesn’t seem to be available on the C5 catch up TV website, but it is being repeated on Sunday at 3.10am if you live in the UK and want to set your recorders.  For my readers outside the UK, the MCAS girl is featured in a Daily Mail newspaper article online here.

Histamine on the rise

This year has not been good histamine-wise and my histamine levels are currently at a three year high.  How do I know?  Here are my symptoms:

  • I’m getting up in the night to pee again, which is something I’d stopped doing.  Last night I had to get up 3 times.
  • I’m not sleeping, and my sleep was the best it’s been for 20 years.  I drop off OK but wake after an hour, then drop off again and wake after an hour……and so on until about 4am.  I’m exhausted after months of insomnia.
  • My skin itches all the time.
  • I have constant hayfever symptoms.
  • My GERD is out of control.
  • I have back pain so bad I can’t sleep comfortably, when the pain had all but disappeared.
  • My bowels are sluggish and irregular, after regularly pooping straight after breakfast for the first time in my life.
  • I’m tired but wired and can’t relax.

Funnily enough I don’t have hives, but I know they’re coming.  They seem to be the last symptom to appear then take weeks to get rid of.  I also haven’t seen an increase in headaches or migraines, which is brilliant but they do usually accompany insomnia for me.

I haven’t been under any more stress than usual, so I’m going to rule out stress as a cause of my histamine rise.  I have been eating too much chocolate than is good for me, so I’m going to stop the chocolate altogether and see if that helps, though I can’t see how a small increase in chocolate consumption could fill my histamine bucket to overflowing.  Other than that I haven’t made any major changes to my diet – I was going to re-introduce yeasted bread but found that I actually like my organic yeast-free bread better so I’ve continued with it other than the odd sandwich with regular bread now and then (which I’ve eaten all along, so no real change there).

The unknown factor is the hormone fluctuations I’m having due to peri-menopause (which is causing the chocolate cravings!).  I’d guess I’m in the final 3 years of peri which is the time when hormones are surging wildly then crashing, wrecking absolute havoc.  Many healthy women have insomnia, increase in itching and allergies, frequent urination, migraines and a host of other symptoms during Menopause so I’m not going to be immune.

Other than that I’ve no idea why my histamine level is increasing.  Despite eating “low histamine” my diet isn’t restricted as I made sure that if I cut something out, eg. tomatoes, I substituted them with something of equal value, eg. peppers.  No hard cheese but soft cheese.  No dried fruits but fresh fruits, etc.  So I still eat a wide range of foods and still make virtually everything from scratch.  I also try my very best to walk for up to half an hour every day, even when I’m in a lot of pain from my EDS or exhausted from my M.E. – exercise has so many benefits that I try religiously to keep my fitness up despite my many limitations.  I should relax more, but I’m so busy I admit I find that challenging, however I’m having a 2 week “stay-cation” over Christmas and might even impose an internet ban (then again, I may not have the will power😉 ).

To be honest I’m a bit stumped.  I’ve done so well for three years now to suddenly see my symptoms returning is very disheartening, particularly when I can’t put my finger on why.

I’m going to increase my intake of olive oil as per the menopausehistamineconnection website, though I already use at least a tablespoon every day in my meals, and I’m plucking up the courage to try Sambucol (a concentrated elderberry extract which is high in mast cell stabilizing quercetin, + Vitamin C another mast cell stabilizer) even though I’m petrified to try supplements as I’ve reacted badly to almost all I’ve ever taken.  I’ll let you know if I notice any change over the next few months.


Weekly roundup

I’m slowly getting over my throat/cough virus though it has taken an entire month.  My energy is still very limited, however, and I’m struggling to get anything done.  My cleaner has now been off for 5 weeks which doesn’t help the situation, especially as I’ve no idea when she’ll be back.

Wednesday I met my bestie for lunch and it was lovely to have some different gossip and for someone else to do the cooking (and the clearing away afterwards!).  I usually go to Camera Club on Weds night but the past two weeks I’ve conked around 4pm and not been able to get out of bed.

Winter has really bitten this week with beautiful blue skies but freezing temperatures.  I can’t tell you how pretty it is here so, despite having the energy levels of a coma patient, I dragged my thermals on and drove up the lakes to take some pictures.  Luckily I was able to park right next to the shore and only had to walk a few yards which was just as well.  Here are a couple of the pictures which I’ll be putting on my Redbubble page shortly:

Friday I was back at the Doctor’s having my breast lump checked.  She said my boobs were so lumpy it was hard to tell what was going on and the little bruise I’ve had for 2 months now is still there, so she’s referred me to the benign breast clinic at the hospital just to be on the safe side.  They usually see people within 2 weeks but are behind at the moment so it may take a bit longer.  The Doctor doesn’t think it’s anything sinister but it is painful, so if it’s a cyst or something they may be able to drain it which should help.

I trim Bertie’s nails myself and usually don’t have any problems.  But for some reason this week I cut one of his dew claws too short and there was so much blood you’d think I’d amputated his leg!  Bertie looked at me in pure shock that I’d hurt him and I felt so sick I couldn’t eat my lunch. I’m still waiting for a knock on the door and the RSPCA coming to arrest me for cruelty to animals!!

I put my Christmas tree up this weekend :-)  A couple of years ago I treated myself to a ‘feel real’ artificial fir in the Boxing Day sales.  It’s pre-lit with lights and each year I just put it away in a cupboard complete with baubles and everything as I don’t have the energy to decorate it from scratch each December.  Let the holidays begin!

Counselling update

I had my second counselling session this week.  I really like Gill, the Counsellor.  She’s bright, intuitive, down to earth and I suspect has a good sense of humour underneath her calm, measured exterior.  She doesn’t just listen then repeat what I’ve said back to her in the hopes I’ll come up with my own solution, she also offers her opinion on what might be going on and is already making me look at the situation with my Mum differently which is the whole reason I went to see her.

She’s also validating of the way I’ve coped with everything life has chucked at me and praise is something I’ve always had very little of.   I gave a little synopsis of my life’s challenges in this post and she marvels at how I’ve gone through all that with basically no support or guidance and come out with such a level head and self-awareness when most of the people around me were driving to hell on a hand-cart in terms of misery and self-destruction.  And it’s made me wonder the same thing myself.  Faced with the same situation why does one person sink and another swim?

Until I left home at 21 my parents and I were living basically the same life.  My Mum’s response was to be depressed, chain smoke and to become ever increasingly frustrated and bitter.  My Dad’s response was to become ever increasingly meek and subservient to keep the peace.  My initial response as a very young adult was to follow in their path – I was miserable, volatile, angry, had terrible self-esteem and made some very poor relationship choices.  The difference was I realized that was no way to live and became determined to find happiness, peace and stability.

I guess that being stuck as a child in an unhappy household and recognizing I couldn’t change my environment but I could change my response to it put me in good stead for dealing with chronic ill health.  When I realized I was going to be ill for the rest of my life I could have just chucked in the towel but I never have.  I’ve had my moments don’t get me wrong, but I’ve never let myself wallow indefinitely in self pity or misery.  As far as I’m concerned I am still alive and I’m determined to make the most of my life, whatever that holds (and at times it’s held very little other than pain and suffering).

What gave Mandela the fortitude to survive 27 years in captivity and come out to lead his Country without anger, blame or judgement?  What gave Dave Pelzer, author of ‘A Child Called It’, the will to survive a childhood of unimaginable abuse and, not only that, to become a successful author, speaker and humanitarian?  I wish I knew, because I’d bottle it and make a mint😉

Speaking to my Counsellor I realize I’m very judgemental of my Mum in particular for the way she has lived her life.  And regular readers of my blog will know, I actually fell out with a long-time friend because of her victim mentality and constant need for outpourings of love and support while some of my other friends, who had much worse lives than her, just got stoically on with it.  People who play the victim seem to bother me on a very deep level.  I find it irritating beyond words that someone would live their precious life in misery when they could live it in joy instead – it makes absolutely no sense to me.  But why does it get to me so much?  It’s something the Counsellor and I will explore.

We are all in the gutter, but some of us are looking at the stars”  Oscar Wilde.


Permanent Health Insurance update

This post only relates to the UK, so if you live overseas feel free to put the telly on😉

Luckily, before I got M.E. back in 1994 and before I knew I had either EDS or MCAD, I took out a Permanent Health Insurance Policy (PHI) which pays a proportion of your salary should you be unable to work due to illness (minus any ill-health retirement pension from your job and any welfare benefits to which you’re entitled).  I wrote about it in this post last year.

My PHI has paid out successfully for many years and was due to end when I reached 60, because when I took the policy out that was the default retirement age (DRA) for women.  After that the state pension, and my small private pension, would kick in.  However, in 2011 the Government in their wisdom increased the DRA for women to 67 literally overnight which means I am going to have to live between the ages of 60 to 67 on Employment & Support Allowance, which currently stands at £108 per week.  This barely covers my Tesco grocery bill let alone anything else and I’m now terrified for my financial future.

I feel I am being discriminated against on the grounds of:

  • Sex: Men can, and have always been able to, have a PHI until they’re 65.  I am being treated differently to men.
  • Disability: If I were healthy and still in full time employment I would be able to either extend my existing policy until 65, or failing that take out a new policy until 65 (my current insurers offer them on their website).  However, as I am disabled and claiming on my policy this isn’t open to me.

So I’m basically being treated differently to disabled men, and differently to both healthy men and women which is blatantly unfair and against the law to boot.  At least, I thought it was against the law until I discovered there is a get-out clause in the Equality Act 2010 which says that existing insurance policies are exempt from equality laws.  I seriously couldn’t believe my ears when I heard that little gem – how can it be fair to discriminate against disabled women just because the discrimination started pre-2011?!!  I’m being discriminated against now in 2016 and silly me thought there were laws against that.

I have tried everything, and I do mean everything, to get my PHI increased until the new retirement age and have had no luck whatsoever.  I’ve contacted:

  • HM Treasury, which overseas the insurance industry, who told me if I felt I’d been mis-sold my policy to take it up with my insurers.  I pointed out the policy hadn’t been mis-sold, the government had changed the goalposts, which fell on deaf ears and they insisted a further 3 times that if I felt my policy had been mis-sold to take it up with my insurers.
  • My insurers told me to get stuffed.  It wasn’t their fault the government had changed the goalposts.
  • The Equality Advisory Service told me I was being discriminated against, but because of the get-out clause in the Equality Act I should contact a Solicitor for advice.
  • I contacted 10 of the top solicitors in the country (one of whom specializes in PHI cases and works with the ME Association) who deal with equality issues and none of them would take my case because I have no money with which to pay them the hundreds of thousands of pounds it would cost to bring a case against the Government.  I have no money because I am too ill to work FFS!
  • The Financial Conduct Authority, who also oversea the insurance industry, told me to take the matter up with the Financial Ombudsman’s Service.
  • I contacted the Financial Ombudsman’s Service who said my insurance company had done nothing wrong and I was being discriminated against by the Government.
  • In desperation this week I emailed the shadow Pensions Minister, Debbie Abrahams and so far haven’t even had an automated reply.  It does not bode well.

In addition, I’ve contacted:

  • The Guardian newspaper
  • Watchdog
  • BBC Breakfast news
  • Panorama
  • WASPI (women against state pension inequality campaign)

none of whom have even bothered to reply to my correspondence.

The unfairness of the situation makes me LIVID.  I didn’t want to rely on state benefits should I become too unwell to work and did the right thing by taking out an insurance so this wouldn’t happen.   The Government put the kibosh on it, breaking just about every equality law known to man, but are allowed to get away with it because no-one will stand up to them on my behalf and I don’t have the resources to stand up to them myself.  And I now face several years of abject poverty as a result of their actions.  It’s so unjust (I would double underline unjust if only I knew how).

I don’t know where else to turn.  The only person I haven’t contacted so far as been Martin Lewis, the Money Saving Expert from This Morning, but feel so disheartened and exhausted from two years of trying to get someone to help and getting nowhere that I currently don’t have the energy or the will.

When I think of the 7 years of poverty ahead of me I literally have panic attacks and have absolutely no idea how I’m going to manage.  It looks like I have 10 years to find myself a rich husband or, failing that, winning lottery numbers!

Weekly roundup

Apologies for there being no blog post this week.  I’ve been in bed since last Sunday with a lergie – an achy, coughing, throat infecting, energy robbing lergie which has made me feel completely lousy.  Don’t you just love winter bugs?!

On top of that it’s been a week for stuff going wrong.  I bought a trio set of new phones in June and was chatting to a friend this week when, after 15 minutes, the battery on my bedroom phone said it was dead (despite always being kept on charge).  So I picked up the call on the lounge phone, which after 12 minutes said the battery was dead.  So I picked the call up on the kitchen phone which, after 10 minutes said the battery was dead and has never worked since!  So I’ve had to return them to Amazon and order another set.

The bulb in my bedside lamp blew this week, which tripped the fuse in the plug so that was to sort.  I put a new bulb in, replaced the fuse, turned the lamp on……….and the new bulb exploded in my face!  It’s the 2nd bulb from a pack of four which has exploded so I’m now going to have to go back to the shop I bought them from and complain that they’re dangerous.

I’m desperate for a new wig as, after about 6 months of use, the fibres get really coarse and grate on my neck like sandpaper.  I’m happy with my current wig so just sent for another one of those from the same online shop I bought my original one from.  Only when it arrived it was totally different to my current one, despite the label saying it was the same.  So I’ve had to get in touch with the shop, send it back, they are going to send for another one from the manufacturer to compare it to, and I have to wait for the conclusion.  And all the while my neck is being rubbed raw!

My Mum wants a new watch for Christmas as she’s struggling to see the time on her current one.  Finding a bracelet watch without a clasp, in gold, with a large face and clear letters has been near impossible but I finally got just what I wanted in Debenhams.  However the bracelet is far too big so I’ve had to send it off to be shortened.

My cleaner is still off with back pain and it’s not looking like she’s returning to work any time soon.  Much as I feel for her I selfishly could really do without being cleaner-less in the run up to Christmas when I’m always more tired than usual and am trying to get over this energy zapping virus to boot.  So, despite feeling like death warmed up, I’ve had to change my bed, clean the sink in my bedroom and mop all the floors which, with the snow and rain we’ve had this week and a certain person’s filthy paws, were disgusting.

I haven’t seen my parents all week as I didn’t want to pass this bug on to them, but had to get out of my sick bed on Friday to take Mum to see her GP.  She’s now struggling to do even basic tasks without getting totally out of breath so we’ve asked for a referral to the lung clinic at the hospital for her to be assessed for supplemental oxygen.  Of course it was sleeting, freezing cold, pitch black as it was an evening appointment and I had Mum’s wheelchair to get out of the boot, get her in it, wheel her inside, then go back and park the car – reversing everything after the appointment.  I was bloody exhausted and soaked:-/

In amongst all that, and with a brain like mush, I’ve had to make a start on a presentation I’m doing for my camera club next month.  The chap who usually runs our beginner’s class is still off with horrendous back issues so we’re all covering for him.  I have to talk for over an hour (!) on “composition” alongside a powerpoint slideshow and, while I don’t mind, I am finding it hard work.

Speaking of the chap with the back issues, who as you may recall lost his wife unexpectedly this spring, we met for lunch recently.  I don’t know him that well, but he was the one who very generously gave me his old printer for nothing so I feel obliged to be kind during the truly dreadful year he’s having.  As I’ve mentioned in previous posts, he makes me slightly uneasy in as much as I know he’s terribly lonely and grieving and that’s never a good combination when you’re a single woman – the fact this guy is 70 and old enough to be my Dad is irrelevant.  I’ve kind’ve been waiting for him to hit on me and, while that thankfully hasn’t happened yet, he did ask me this week to go on an all-expenses paid holiday abroad with him in the New Year.  As I’ve said, we’re not especially close friends or anything and I was so taken aback by the offer I said “No!” rather too abruptly then felt dreadful.  I know he just wants some company, but surely he has male friends or family members he could have asked, not a single woman young enough to be his daughter.

Being as though it’s only 5 weeks til Christmas I thought being stuck in bed was an opportunity to make a start on my festive online shopping.  I always have cards made for my very closest friends and family and this year Bertie is the cover boy.  This photo is available to buy in my Redbubble shop, which is where I sell my pictures and merchandise (blatant plug!).  Not every single photo I’ve taken is available in my shop yet, though I am trying to get it updated – if I post a picture on here that you would like to buy as a card or whatever please just let me know and I’ll upload it.  If you click on any of the images in my portfolio, then scroll down you will see which types of merchandise are available for that photo.  I think making Bertie wear a Santa hat has traumatized him for life😉