Weekly roundup

I get the feeling that someone ‘up there’ doesn’t like me.  I know people who sail through life, whereas if something can go wrong in mine it will.  I am due to see Dr Sargur at Sheffield on 27th June.  He is one of only a handful of NHS Consultants in the country now treating MCAS patients and has a good reputation on forums. The appointment is for 11am and it’s a 3 hour train journey, so I decided to go the day before and have booked a hotel room and my return train tickets.  Then this week, I receive a letter saying that “now the consultant has seen your GP’s letter he has decided it’s an inappropriate referral and has cancelled your appointment”.  WTF?!  I sat on the stairs and cried.  I have had no treatment or advice on my MCAS since I was diagnosed 6 years ago and am currently having some symptoms which are worrying me (I still have the swellings under my armpit and in my elbow).  I’ve also lost £100 on my hotel room (a huge amount of money to me) as it was non-refundable and have no clue if I’ll get a refund on my train fare.  I now need to speak to my GP as to where I go from here, but in the meantime I’m going to write to the Consultant and explain my situation.  I thought we had a legal right to be treated by any hospital and consultant we choose, particularly when there are zero specialists locally.  People who live in rural areas are completely discriminated against when it comes to health-care and it is not on.

I have had to fight for every ounce of care I’ve ever received and I am exhausted.  More than that, I feel beaten.  On top of  the18 months I’ve just spent fighting for help for my Dad and getting nowhere I just don’t know if I have any fight left in me to tackle the situation.

I was supposed to hear from D&G about my fridge/freezer insurance complaint by last Friday but of course have heard diddly squat.  They will be deliberately taking their time in the hopes I will cave and buy a new fridge so they won’t have to fork out for one.  The fuckers!  I’m giving them 5 more days to replace my appliance then am opening a complaint with the Ombudsman, and will also be writing to the FCA and informing them of the tactics used.

It was my Mum’s 79th birthday this week.  She had her ears pierced 30 years ago but for some reason along the way had stopped wearing earings and the holes had closed up, so she asked for them to be re-done for her present.  My folks, Bertie and I went out for lunch and actually all really enjoyed it which makes a change – the fact my Mum decided not to drink probably had something to do with it.

On Friday I went to my elderly friends’ house to fill in forms for Attendance Allowance, which is a welfare benefit payable if you need help with daily living and are over 65.  No-one tells you about your entitlement to AA and my friend had never heard of it despite being regularly seen by his GP, physios, OTs and the falls team.  It’s a disgrace that elderly people aren’t told about the benefits they can claim, despite paying into them all their working lives.  Even when you do know about it the 31 page form is so daunting it puts most people off and if I hadn’t have filled it in for him my friend would just have binned his application.

I’m mid-cycle and have spent the entire weekend with a migraine, which also makes me nauseous and generally bleugh.  I seem to be getting them more than usual this year which I’m putting down to my fluctuating peri-menopausal hormones.  Please God just make it stop.   The weather is also atrocious for June – yesterday it was only 11C and it has rained most of the week.  I am ready for summer, fed up of being stuck in the house and just wish the sun would put in an appearance.

Well, that was a totally whingy post wasn’t it?!  I wish I had something positive to end on but I don’t 😉  This week has felt like an uphill struggle and after 25 years of uphill struggle I’m pretty much knackered.  I did try hard to win the £120 million euro jackpot on Friday night but failed miserably.  All I can do is trudge on and hope that this week is better.

 

 

 

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Weekly roundup

Time has little meaning when you’re chronically ill and each day is the same.  Monday was a bank holiday but that didn’t even register on my radar because it was just like any other Monday, apart from extra traffic jams as tourists descended on the Lake District in their thousands for the half term holiday.  Pity the weather’s been rubbish for them!

Tuesday I had lunch with my bestie.  I was desperate to see her just to gain some perspective and have a bit of different gossip – other than her, the only people I spend any time with are over the age of 75!  We should all have someone with whom we can just be ourselves, has the same sense of humour and who gets us – my bestie is that for me 🙂

I am still being tortured for painting my shed doors the other week.  My neck is really sore and Wednesday morning I woke and was unable to move my right arm.  I’d obviously dislocated something in my upper spine in my sleep and was in a fair amount of pain, so I stuck my TENS machine on it and tried to just crack on.  Thursday morning I woke and it was totally fine!  That still amazes me – that you can be perfectly alright, go to bed and wake up unable to move some body part or other, and conversely go to bed in agony and wake up ticketyboo!  If you told that to any Doctor they simply wouldn’t believe you.

Thursday I made my tenth 180 mile round trip of the year to the RVI in Newcastle with my Dad.  The spinal surgeon had asked to see him and we both thought he would finally get his decompression surgery which had been postponed from last December, but no.  After waiting 45 minutes as the surgeon was running late we were told he won’t do Dad’s surgery until he’s seen the orthopeds about his hips.  Could he not have fucking told us that on the phone?!!  We were in and out in 10 minutes, then faced road works and diversions in the middle of rush hour in a city neither of us know – it’s was super stressful, esp when my sat nav decided it wasn’t going to work.  Why on earth, after seeing Doctor after Doctor since November 2017 have they just decided to scan his pelvis and realized he needs a hip replacement?  Should that not have been done 18 months ago?  We’re all starting to despair.

I have a tall fridge/freezer and the fridge has started to get icy and all my vegetables are freezing solid.  I rang the repair company I usually use, only to be told they don’t service Hotpoint as Hotpoint make their appliances so they can only be repaired by Hotpoint.  So I rang Hotpoint and the cheapest way I could get an engineer out was to take out a £120 insurance – what a fucking scam.  The guy turned up on 9th May and found ice the size of a berg had blocked the drain in the back of my freezer, so removed that and declared it fixed.  Only it wasn’t.  So three weeks later I had to request another visit and this time was told the sensor had gone and it wasn’t fixable.  Under the terms of my new insurance, if on the 2nd visit it is deemed irreparable I am given a replacement fridge/freezer, so that’s what the engineer requested.  Only I get a call from Hotpoint saying the two engineer visits have to be 30 days apart otherwise my insurance isn’t valid.  There is no mention of that in the Terms & Conditions of my insurance, however, not even in the small print!  So I’ve now made a formal complaint to Domestic & General (the insurers) for not honouring my insurance.  I know I absolutely am covered and they’re just trying it on, but the complaint can take up to two months to sort out and D&G are quite well aware that you can’t go two months without a fridge – they bank on you buying a new one yourself so they don’t have to!  This bloody country has gone to the dogs and no-one is stopping these rogues from ripping us all off.

I saw some rubber Pixie ears on Amazon recently and just knew they would come in handy for something!  I haven’t dressed up in a while and, I have to be honest, I’ve missed it so I decided to amend my recent Cockchafer picture to include a pixie passenger – the resulting image I’m calling The Hitchhiker 😀

 

Weekly roundup

It’s been a non-descript week, full of the mundane.  I know that’s how most people’s lives are most of the time but that’s not how I intend to live.  Life is so short and so precious it needs to be more than just watching the days go by – I owe that not only to myself but to all those who are too ill to have a life.

Tuesday I helped my elderly, disabled friend stage his house for sale.  It’s a stunning property with 5 bedrooms, 4 reception rooms (one of which is hidden behind a panel in the wall!), oak beams in all the ceilings and with stunning views of the mountains, however he’s now on his own and can barely walk so it’s way too big for him and he’s hoping to get a smaller bungalow in town.

The rest of the week I’ve taken advantage of the dry weather to tackle my garden, which has been neglected while I did the car port.  It’s the size of a postage stamp and has no grass, but as my ability to bend is so limited I still find it hard work to look after despite the fact I absolutely love gardening.  I’ve pruned and fed and tidied, though, and it’s now looking pretty as my little patch of wild flowers are starting to emerge.  The Solanum Glasnevin over my front door is looking particularly splendid this year.  I’m not sure how long it will take my knees and back to forgive me, however, and I’m currently walking like a constipated duck.

The saga with my Dad’s health continues.  He has spinal stenosis (narrowing of his spinal canal) and was due to have surgery at the start of December last year, however the Surgeon postponed the op when he discovered my Dad’s severe neuropathy.  Despite trying hard, the Neurologist can’t find any reason for the neuropathy so it’s looking like his surgery can now take place and we’re back at the RVI in Newcastle on Thursday to discuss.

Have I mentioned I’m getting weird choking sensations?  It’s been going on for about a year now and is really bizarre.  I feel like I can smell warm smoke, which gets in the back of my nose and throat and makes it hard to breathe.  Someone else brought it up on an MCAD forum recently so it looks like it’s a mast cell thing and I’ll mention it to the consultant when I see him next month.

A week on from painting the shed doors I still can’t turn my head.  I think I’ve pulled/torn my levator scapulae muscle which is pretty sore.  Because I am so motivated to do stuff I often forget I am chronically ill and it’s only after I’ve spent months in pain that I think “maybe I shouldn’t have done that” 😉  I’ve also had my period and spent 3 days in both migraine and endometriosis hell.

The highlight of my week was being awarded my second photographic distinction, which has been 2 years in the making.  My first, the DPAGB, is awarded by the British photography body and was achieved by submitting a selection of images which were judged by a panel.   This second, AFIAP, is awarded by the international photography body and has been achieved due to my success in international Salons.  So I can now put DPAGB AFIAP after my name – how terribly posh!  The “A” in AFIAP stands for artiste, but my Dad says putting the word P*** in front of it would suit me better – cheeky mare 😀

Weekly roundup

I’ve had a much better week emotionally after making the decision to stop the stuff going on at my Camera Club from affecting me.  I’ve started to eat properly again and because of that feel physically stronger.  My Federation is still looking into my complaint so I’ll just have to wait to hear, though it is taking way longer than it should.

The sun finally came out this week and it’s actually felt like Spring.  I always physically do so much better in sunny weather for some reason, so long as it’s not boiling hot – I have loads more energy and my pain levels are reduced, so it feels like a mini break from being sick.

Monday I decided to drop everything and take myself off for an hour for a potter round a local bluebell wood.  It’s just so relaxing and pretty and really rejeuvenated my soul.  The smell was divine, there were butterflies and bees by the hundreds, the birds were singing in the trees and I was surrounded by half a mile of flowers.  I took butties and a flask with me and just sat and took it all in.  Annnnnd breeeeathe 🙂

While I’m having a spurt of energy, which we all know won’t last, I’ve been cracking on sorting out my car port following the installation of my new little shed.  Now, I know having a shed delivered and painting the doors up to look nice barely registers on healthy people’s radar, but when you are so ill cooking a meal or taking a shower can defeat you doing any kind of DIY project is a big deal.  So I’m tickled pink with my new look car port and if that makes me a saddo then so be it 😉 My neck, right wrist and shoulder aren’t quite as enamoured by my days of painting said shed though it has to be said and I now can’t turn my head.  Here are the before and after pictures, just don’t ask me where all the junk has gone 😉 :

Before

After – spot my mobility scooter on the left!

I’ve now sorted out my trip to Sheffield to see Dr Sargur re my MCAD.  I’ve booked a hotel and my train tickets, and arranged for Bertie to have a sleep over with his Nan and Granda, so hopefully I’m all set.  Please God may the NHS not cancel the appointment because my £99 hotel bill is non-refundable.  What’s with charging extra for breakfast these days in hotels?  Are you supposed to starve while you’re on your hols?!  It’s outrageous.

I found out this week I’ve won yet another gold medal in an International Salon, this time with my Ophelia photo.  That makes 5 so far this year and we’re only in May!  I’m just a country bumpkin who spends half her life in bed, am self taught and only 6 years ago didn’t even own a camera, so if someone even likes one of my pictures it’s huge.  To be winning gold at world level is just so surreal it’s like it’s happening to someone else and I keep thinking that one of these days the judges are all going to realize I’m a fraud and demand their medals back!

 

Weekly roundup

I thought, just at the moment, my life couldn’t get any worse………….and then it did.  Regular readers will know that I am in love.  With Hugh Jackman.  Yes, the A list Hollywood star Hugh Jackman – hey, if you’re looking for your soul mate aim high right?!

I learned that, this week, Hugh called in for lunch to a Bistro not a mile from my house.  I live in the freakin middle of nowhere and Hugh is Australian – it’s not like you’d expect to see him at your local diner but apparently there he was, in all his gorgeousness.  And I missed the whole fucking thing.

If I had known he was going to be in the vicinity I would have kidnapped him, obviously, and caged him for all eternity in my outhouse.  Kind’ve like a Gerbil, only way cuter and with the ability to speak.  And this has been denied me.  I am inconsolable and may never recover 😉

My tiny new shed arrived on Wednesday, so this weekend my neighbour gave me a hand to put it together.  It wasn’t difficult but we only got the 4 walls screwed together before my energy ran out so it still needs a roof.  I just can’t wait to get it finished so that I can put my Xmas tree away, which has been residing in my lounge since the start of December.

I’ve been quite migrainy this week and my energy is way low, so I’ve been in bed a lot.  At least it’s given me the chance to work on some photos I took last year and I’m quite pleased with this one of a Cockchafer Beetle.  I was in the spare bedroom last June with my big light on photographing some blossom when the beetle flew in through the window and was attracted to the light.  Because it was on a really bright, white background I was able to cut it out and put it in this picture.  The cute thing is the bug actually looks like it’s smiling 😀

I couldn’t come to an agreement over my complaint at my Camera Club, so I’ve asked our Federation to look into it.  I might know the outcome this week.  As you know I’ve been soooo stressed over it to the point where it’s made me sick, and this week simply decided to let it go.  Not the complaint, which I’ll see through to the end, but my distress over it.  Before all this I had a joyful life and I need that back.  So whatever will be will be, and I shall be happy regardless.

I seem to have done quite well on the photographic achievements front this year and everyone’s been ribbing me about needing an extension to house all my trophies.  Slight exaggeration, but I have now put up some shelves and have my own little photography corner.  I’m still missing a trophy which I won’t get til December (no clue why, it’s ridiculous when I won it in April!) plus a silver medal and a gold medal, but you get the gist.

I received my appointment through to see the mast cell consultant at Sheffield this week – it’s on 27th June, so not too long to wait.  It’s a 3 hour train journey though, then a 30 minute bus ride to the Hospital (eek!) and my appointment is for 11am, so I’m going to go the day before and stay over – it’s less stressful and exhausting if a shit load more expensive.

Well, I suppose I should think about washing up all the dirty pots residing on my kitchen worktops.  I’ve actually been thinking about it since yesterday morning, I just haven’t actually gotten around to doing it, and at this rate I’m going to need a chisel to get the dried on food off! 😉

 

 

Home Histamine Testing News!

As my regular readers will know, a dedicated team in Hong Kong are working on a small device which will allow members of the public to test food in their own home for histamine.   It’s the Holy Grail for us, as the only way to know how much histamine is in the food we eat is to test the food we eat!

The testing device is now in fairly advanced stages of research although isn’t on the market yet.  The team have promised to send me the device to test in the next month or so when the final prototype is ready.  I’m sooooo excited about that I can’t even tell you and am eager to start testing foods and sharing the results with you all.

I heard from Roy this morning with some fabulous news.   The team had submitted their sensor to the 47th International Exhibition of Inventions in Geneva and I am thrilled to announce they have won gold 🙂  GOLD!  Isn’t that brilliant?!  The exhibition is regarded as the world’s most important event exclusively dedicated to inventions and involved more than 700 exhibitors from 45 countries.  Inventions are presented by companies, universities, private and State Institutes and organizations, and there are more than 30,000 visitors from five continents alongside 650 journalists from both the written and spoken press and television from throughout the world.   It’s a massive achievement.   Huge congratulations to all involved and I’m delighted the team have been awarded the recognition they deserve.

Taking the Pee

For the past decade whenever I have blood tests and my kidney function is checked it is found to be abnormal.  Adults of my age should have a GFR of >90 and mine is consistently in the 70s – I am therefore classed as having stage II chronic kidney disease.  Despite that, my GP never mentions the abnormal result.  When I’ve picked her up on that she just says “oh, it doesn’t mean anything – you were probably dehydrated the day you had the test done”.  What, every time?!

As I said in a recent post, I’ve just had an email off a friend who has ME and strongly suspected MCAD and hEDs.  She’s just had her kidney results back and they are also abnormal.

Someone on the ME Association’s Facebook page recently asked a question about peeing.  She said she wees for England and is that normal in ME?  Well, from my experience “yes”!  I pee constantly, sometimes going 3 times in an hour, and I don’t mean I do a little trickle – I mean I PEE.  Like a race horse.  I have no idea where all the fluid comes from.  My concern is that I have piddled so much in the last 20 years I am literally exhausting my kidneys and one of these days they will lie down with their tongue hanging out and die like an overworked donkey.

Before going on a low histamine diet my peeing was out of control.  I often got up 6 times in the night to urinate and during the day was never off the loo.  There was/is no pain involved, I just peed and peed and peed.  After going low histamine, however, this improved substantially and now I only wee in the night if my histamine bucket is high.  But I do still wee much more than your average human.

When you have hEDS you can definitely get urine retention and it’s easy not to empty an overly-stretchy bladder properly, but that still doesn’t explain the sheer volume of widdle.

These days, if we have a symptom like this we would expect to go on Google and find out the cause, only of course no-one looks at this stuff when it comes to ME (they’re too busy concentrating on ‘fatigue’) and research into MCAD and hEDS is still so scarce that nothing much pops up.  It’s definitely something I’ll discuss with the MCAD doctor if/when I get to see him.