Year ten of lockdown………..at least, that’s how it feels. The restrictions of not being able to get out much and the isolation from friends and family is taking its toll now. The first lockdown back in March 2020 took place in glorious spring weather, when we could all sit out in our gardens like we were on an extended holiday, but on lockdown no.3 when it’s -6C outside and winter darkness descends at 4pm in the afternoon it’s a different kettle of fish. However, we’re still a long way from having restrictions lifted with new records for covid related deaths being announced virtually every day 😥.
Bertie hasn’t been to the groomer in months and his fur was really long. It makes him look cute but it gets tangled and knotted and means I have to brush him every single day, which both he and I hate. So on Tuesday I got the clippers out and gave him a buzz cut. I don’t have lots of clipper attachments or anything, so he literally got a no.3 all over which I wouldn’t normally do until spring when the warmer weather arrives. He’s now wearing a woolly dog jumper to keep him warm 😁.
A telephone appt for my Mum with the consultant at the hospital had been arranged for Thursday morning and I’d planned on being there as Mum is useless on the phone. However, the bloody doctor rang on Tuesday instead when I wasn’t there and decided to book Mum in for a bowel CT. Mum didn’t even think to mention her issues with swallowing and breathlessness, so I rang his secretary and made him keep the original Thursday appt when I got the chance to speak to him. He clearly couldn’t be arsed to talk to me though and didn’t give me the opportunity to give him the full picture of what’s been going on. He has extended the scan to cover Mum’s entire abdomen which is needed, but left it up to me to ring our GP and ask for a chest x-ray! If Mum’s breathing is much worse and she’s getting food stuck in her gullet, I would have thought ruling out a chest tumour would have been required but apparently not. FFS why do I have to keep doing these wankers jobs for them?!!!! I also told him on the phone that Mum was too weak for a bowel prep and had been told in the past that as she is in stage 3b renal failure that her kidney function is too low to cope with it in any event, so what came through the post yesterday? Yep, bowel prep and a barium swallow. Jaysus with fucking knobs on!!!!!!!!!!!!!! I’ve written a letter to the consultant requesting reassurance that it is safe for Mum’s kidneys to have the bowel prep and asking if she can have a chest x-ray at the same time, to save us a second visit to the hospital which increases both of our infection risk, not to mention the fact that the 60 mile round trip and effort of attending the hospital will make my already very unwell Mum worse 🙄.
There are days where I think I’m the only cognizant grown up left on the planet, and I have a fucking brain injury!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I’ll stop shouting now 😉.
On Saturday arvo I’d booked another Zoom talk with a speaker who does beautiful portrait photography. So I made a brew, got a box of chocolates, reclined my comfy armchair and listened to him for 2 hours. It was fab and a much needed distraction.
Today there is all sorts of housework needs doing which I never seem to keep on top of, no matter how hard I try. However, I refuse to work on Sundays as everyone deserves and needs time off, so I am going into the spare bedroom instead with my camera to light paint some apples for an upcoming competition. No-one ever lay on their death bed wishing they’d done more laundry and I think it’s a much better use of my time and precious energy 😁.
First, though, I need some breakfast then I’ll be off out with the mutt. It’s another stunning winter’s day here in the north of England, but it will be bollock freezing cold on my mobility scooter so I’ll fill a hot water bottle and shove that under my anorak!
This blog was started 8 years ago after I’d been diagnosed with Mast Cell Activation Disorder by Professor Seneviratne, a leading mast cell immunologist in London. For 15 years I’d had increasing reactions to medications to the point where I could no longer tolerate drugs of any kind, then to add insult to injury in 2012 when I was 44 and just beginning peri-menopause I started to react to food. At one stage I couldn’t even drink water without passing out and I was scared to death.
It didn’t help that I wasn’t believed by anyone in the medical profession. I was given prescription after prescription and told “you’ll be fine, there’s nothing in that you will react to”, only to have what I now know was anaphylaxis in my bedroom, alone, in my little cottage in the middle of nowhere. When I reported these reactions to the Doctor, not knowing what they were, I was told it sounded like a panic attack and that I was just anxious about taking tablets. Which was bollocks, obviously, and it still makes me furious that I was diagnosed with anxiety disorder with no tests, physical or psychological. What branch of ethical medicine is that I wonder? I was prescribed anti-depressants which I couldn’t take on account of the fact that I was allergic to those too, and in any event I didn’t need them as I wasn’t depressed – I was life threateningly ill.
None of the tests I had done at the Gastroenterology department of my local hospital could find any problems with my stomach. Of course they couldn’t, because the problem wasn’t technically with my stomach (although it later transpired I was lacking in a critical gut enzyme which breaks down histamine) – it was with my immune system! At my insistence I had also been referred to the regional allergy unit and had a very small sample of skin prick tests done, which showed I was allergic to dogs and birch pollen, neither of which accounted for my increasing reactions. The immunologist concluded I also had multiple chemical sensitivity, an insect saliva allergy and idiopathic urticaria (in other words hives of unknown cause) but no explanation was given for my drug and food reactions.
In the end, I solved the puzzle myself. I’d been diagnosed with Hypermobile Ehlers-Danlos Syndrome two years earlier in 2011 and as I frantically researched my weird and increasing reactions I came across Mast Cell Activation Syndrome, which is found in an estimated 10% of hEDS patients, and it was my light bulb moment. After being alone in my struggles for years I finally found other people online who were having exactly the same issues as me and the relief that I wasn’t the only one and wasn’t losing my mind was enormous.
Back in 2013 if you mentioned MCAS to doctors in the UK and you’d get a very blank stare at best and a frustrated “have you been on Google?” sigh at worst, so I ended up paying privately to see Dr Seneviratne and was diagnosed with not only Mast Cell Activation Disorder but also Histamine Intolerance. My mast cells were over-producing histamine (and other nasty chemicals) and to make matters worse I was lacking the DAO enzyme in my stomach whose job it is to break down even normal amounts of histamine, let alone the shed load my immune system was producing. It was a double whammy and I’m not surprised I was so sick.
The information back then on MCAS was sketchy, and there was virtually none coming from the UK, so I started blogging in the hopes that my experience would help other people like me to know they weren’t alone. And here we are, over 1 million blog hits and 1000 followers later!
Back in 2013 my main symptoms were:
Anaphylaxis to…….well, life really! Food, drugs, supplements, some liquids, just about every ‘alternative’ practice from acupuncture to homeopathy, exercise, friction, pressure and even my own emotions.
Flushing on my face, chest and abdomen. I’d flushed since I was a baby (we have the photographs to prove it) which is how I know I was born with MCAS.
Urticaria (hives to you and me!) which appeared both randomly for no apparent reason, but also in response to stress or high emotions, and which lasted for weeks at a time.
Dermographia (ie large wheels) when any pressure was applied to my skin, eg from tight clothing or if I scratched myself.
Lip swelling and throat itching.
Itchy skin and scalp, which drove me insane.
A permanently blocked nose and daily persistent sneezing.
The worst insomnia of anyone I’ve ever come across anywhere in the world. At one stage I didn’t sleep a wink for 3 weeks, until my skin was peeling off, my vital organs were failing and I genuinely thought I would die.
Constant peeing. I was never off the loo, going up to 4 times an hour during the day and 4-6 times every single night. And each time I produced enough piddle to drown my dog. My poor kidneys must have been exhausted!
Chronic daily nausea.
Lifelong constipation. Most people with MCAS have diarrhoea but not me, I went the other way.
Horrendous reflux, which was so painful I genuinely considered suicide.
Oesophageal spasms (although I didn’t know that’s what they were at the time). For years I’d retched and retched for no obvious reason particularly first thing in a morning.
I developed hay fever at the age of 45 which I’d never had before.
Colicky type stomach pains.
Exaggerated reactions to insect bites.
Severe migraines and an almost constant daily headache.
Alopecia (ie hair loss) to the point where I now wear a wig.
Low level depression (but I’ve thankfully never suffered from anxiety).
My saving grace was a low histamine diet. I started off very strictly, but as my symptoms have subsided I’ve been able to relax a bit and now eat a less restricted diet which works for me. It’s a very individual thing, though, because the foods I react badly to won’t necessarily be the foods someone else with MCAS and/or HIT reacts badly to. If you want to see the diet I ended up using it’s available here. Within 4 months I’d stopped having anaphylaxis every time I ate, and 6 years down the line my HIT is now totally under control so long as I stick to my safe foods!
Speaking of which, I do try re-introducing banned foods now and again:
I love yoghurt, and my research showed that it hadn’t been found to be high in histamine in any testing, so last year I tried eating plain, organic yoghurt again. Big mistake. Within 4 weeks I was having anaphylaxis, so I reluctantly had to stop.
Chocolate. I am menopausal and crave chocolate like a heroin junkie. But it does not agree with me and gives me migraines. I eat it anyway now and again and just live with the consequences (I’m not perfect, so shoot me!).
Bread. I gave up bread containing yeast for years, but actually bread hasn’t been tested for histamine in any lab as far as I know and bakers yeast has been shown to be low in histamine. So I started eating normal bread again and had no problems whatsoever. Bloody brilliant!!!!
I’ve never stopped drinking tea because without it my life isn’t worth living. And I’ve never reacted to it so why would I stop drinking it?!
Spaghetti hoops. Which comes in a tin and contains tomatoes, both of which are considered taboo on a low histamine diet. But I’ve been eating them for months now and had no problems at all. You can’t beat hot buttered toast with spaghetti hoops and a steaming mug of builders tea *drool*.
I’ve eaten fish for the past 4 years and it hasn’t caused me any problems, despite it being a food often found in tests to be high in histamine. I don’t eat ‘fresh’ fish, though, as there is nothing fresh about it and stick to frozen fish, mostly salmon but also haddock and cod.
As a pesco-vegetarian I eat Quorn regularly and have never reacted to it despite the fact it is a mildly fermented product.
I also eat loads of dairy products every day with no issues, including mozzarella cheese (which as a fresh cheese I discovered is probably low in histamine).
The diet helped my reactions after food enormously and helped a few of my MCAS symptoms but by no means all as they had a totally different cause. I developed HIT in my forties for reasons unknown, but was born with MCAS, most likely as a result of my hEDS, and as a genetic disease it is incurable.
The treatment for MCAS is mast cell stabilizing medications including, but not limited to, anti-histamines. The trouble is, my mast cells hate chemicals and I reacted to almost every drug I tried 😥. I am currently tolerating Famotidine, which is an H2 antihistamine needed for my hugely painful reflux, but my mast cells can have a hissy fit at any time and I have no clue if I’ll be able to tolerate the drug tomorrow or the next day! Other than that, I can tolerate very small amounts of Infant Ibuprofen suspension for my migraines and period pain but that’s about my limit. In particular, I don’t do well on H1 antihistamines, which is a sod in the summer when my hay fever, itchy skin, and reactions to insects are rampant.
Surprisingly, there is nothing in the literature about people with MCAS who react badly to drugs – a situation which leaves me gobsmacked 😮. It’s like saying to a diabetic that the only resource available to stop them going into a coma is to be injected with sugar – the very thing which put them in the coma in the first place! The second it becomes obvious you can’t take medications Doctors simply stop seeing you, because that’s all they have available in their armoury. It’s understandable, but doesn’t help me as the patient and when your symptoms are as serious and life threatening as anaphylaxis it’s really, really scary to be left alone to deal with that without medical care. I haven’t even been provided with an epi pen and have never been under the care of a specialist with knowledge of mast cell disease (after my diagnosis I couldn’t afford to continue seeing Dr Seneviratne and in any event he’s 300 miles away) 😕.
The symptoms which improved enormously on a low histamine diet, and with taking an H2 anti histamine, were:
Vastly reduced anaphylactic attacks, though they do happen every now and again albeit mildly. The reasons for this is that histamine overload is a bucket effect and if I’ve had a particularly stressful or busy day which increases my histamine levels I may have an attack in the evening after my supper whereas I’d been fine earlier on in the day.
Virtually no oesophageal spasms – I’ve maybe had half a dozen in the past 5 years where I used to have them almost every day.
Huge improvement in insomnia – within months I slept through the night for the first time in 20 years.
Chronic daily headache disappeared, though I still have the same amount of migraines.
No more lip swelling.
No more blocked nose and I sneeze much less.
Huge improvement in my constipation. I started opening my bowels normally every day for the first time in my whole life.
Huge improvement in my urinary frequency and it’s rare now I ever need to wee during the night.
I rarely flush after a meal now and my flushing in general is much improved.
I rarely feel nauseous, when it was a permanent feature for years.
My lifelong mild depression vanished!
Up until a year ago, the MCAS and HIT symptoms I’d been left with were:
Hives – no change at all in my urticaria
Dermographia – no change there either
Itchy skin and scalp, though it was less than it used to be
Chronic, severe reflux
Year round hay fever
Of course, I do also have profound fatigue, pain, brain fog, dysautonomia and other issues but these stem from my M.E. and/or hEDS, so I’m not including them as symptoms of MCAS even though they are probably related as the MCAS, M.E. and hEDS are all intertwined with each other.
In the last year, however, as I’ve transitioned from peri-menopause into full menopause something unexpected has happened! My hives have all but vanished. They always appear when I’m stressed, and back in March 2020 at the start of the Covid situation I was very, very stressed indeed……….but there was no sign of a single hive 😮. I’ve had the odd one or two pop up in the last twelve months but nowhere near the number I would have expected considering everything that’s gone on during the pandemic and I can only conclude that my rapidly vanishing hormones have helped? I guess time will tell whether any more of my remaining HIT and MCAS symptoms reduce along with my oestrogen and progesterone!
So, that’s where I am today. No reactions after food so long as I stick to my diet. Veer off it, however, and the symptoms start to creep back within a few days. I still battle with a few really trying issues like severe and chronic migraines and horrendous reflux but compared to how sick I was 8 years ago I’m doing good 🙂.
It just goes to show, that despite MCAS being a lifelong disease for me it has also been a changing disease.
In childhood my symptoms were:
When I hit puberty I also developed:
In my thirties I developed:
Allergic reactions to things like massage, acupuncture, reflexology, chiropracty and similar.
In my forties, when I started peri-menopause:
All hell broke loose!
Now I’m on a low histamine diet, taking antihistamines and am entering menopause the landscape is shifting again and I’ll let you know in a few years how my fifties pan out!
I am officially over the lockdown. When you find yourself cleaning your oven, even though the effort will cripple you for days, you know you are beyond bored. There are loads of jobs in the house that have been put off due to the pandemic. I keep thinking “I’ll get that done when all this is over” but of course we’re a year down the line now and you can’t put stuff off forever. I would normally pay £40 for the lovely oven man to come and clean my cooker, but I’m still not letting anyone into my home due to infection risk and that isn’t going to change any time soon as I’m not having the vaccine.
My parents have no such qualms about infection risk. They still don’t give Covid much thought, really, as demonstrated by the fact that my Dad took my Mum for a blood test on Weds and neither wore a mask despite the humongous sign on the door 😮. Mum said she wondered why everyone was staring at them as they walked into the health centre! FFS.
They’re also not the slightest bit bothered about having people in the house, letting Tesco deliver their shopping into the kitchen. Yesterday, they also had the men from AO.com there for 3 hours fitting their new dishwasher, oven and hob. Mum did say, though, that she stayed in the lounge out of the way but I know for a fact my Dad will have stood and chatted to them because he’s desperate for company but won’t have thought to wipe anything the delivery men touched with disinfectant after they left. The guys were apparently lovely and have made an excellent job, so I’m thankful for that because my parents can’t deal with any form of stress. They can’t work out how to turn the oven on, though, despite trying for 3 hours last night so I’ll have to go today and show them how it works!
My revised offer on the plot of land I love was rejected again. According to the Estate Agent a couple want to buy both the plot and the 4 acre field it sits in and are putting in an offer on both this week. I can’t compete as I don’t have that kind of cash 😥.
I had a lovely Zoom brew with my bestie on Friday. I’m really missing meeting up with her in person. It’s fine to email and ring, but nothing beats a face to face.
I also had a nice couple of hours Saturday arvo. Someone whose photography I hugely admire was giving a Zoom talk to the Royal Photographic Society and there were free tickets available to non members (!), so I took full advantage of that along with 250 other people from all over the globe. I’m freakin’ loving Zoom. I can join in with society from my bed with no energy expenditure whatsoever. Please God can Zoom continue after the pandemic is over 🙏.
I live directly opposite our little village Church, and my next door neighbour has a key. The Church isn’t currently open to the public which provides a great opportunity to take some pictures without being disturbed, so this morning I’m getting the key and popping over with my Camera. I have an image in my head where ghostly angels are sitting in the pews, but I’ve no clue whether this will pan out or not when I try it! It’ll give me something to do but.
Well, my stomach is rumbling so I’ll go and get some breakfast. It’s 7.30am and out of my bedroom window the sun is just starting to rise over the Pennine fells. We have had a prolonged cold spell here in the north of England and the sunrises and sunsets have been magnificent. I’ll leave you with a few. Until next week my lovely friends, stay safe x
It’s been 15 months since my last big post about my menopause transition, so I thought I’d fill you in on what’s been happening. I’m copying my post from September 2019 to begin with for those who are new to my hormone saga, but for those who are already familiar with my relationship with Aunt Flo feel free to skip to the last few paragraphs for the update!
I have been in peri-menopause (where hormones are declining but you still have periods) for 9 years now. I am 53, so am past the average age for Menopause in the UK which is 52. As my periods began at the age of 11 I’d hoped they might end early, but no – they want to torture me for as long as is humanly possible. The fuckers.
In the first 5 years of peri-menopause I only had a few symptoms, such as:
Sudden uncontrollable rages (though in fairness I was having a nightmare with my alcoholic Mum, so maybe not all of that was hormone-related!)
Dizziness (which turned out to be very low ferritin, ie iron, stores and once that was addressed the dizziness improved substantially)
Occasional itching in the lady-garden, particularly after my period which sounds trivial but drove me bonkers
Oily night sweats, which went on for a good 4 or 5 years
Hair loss on a grand scale, though this could also be related to my mast cell disease
A couple of hot flushes
Severe, unrelenting and hugely painful reflux.
However on top of these usual peri-menopause symptoms, a previously unknown issue with my mast cells and stomach enzymes surfaced and I was diagnosed with both Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance (HIT). Changes in hormones at both puberty and peri-menopause anecdotally seem to trigger histamine problems in susceptible women and mine went off the Richter Scale in severity 😕.
I’d also been diagnosed a couple of years earlier with Hypermobile Ehlers-Danlos Syndrome, which I’d been born with but hadn’t caused too many problems until I hit 40 when all hell broke loose. Again, anecdotal evidence from female patients seems to suggest that hEDS is made much worse by hormonal fluctuations and seems to get worse at both puberty and menopause.
In years 5-7 of peri-menopause some of the common hormone-related symptoms went, only to be replaced by new ones:
The night sweats ceased
The rages subsided
The itchy skin was much improved
After treating my low ferritin stores the insomnia was much better and I slept really well
However, I then developed:
Shooting nerve pain in both breasts, plus a pea-sized lump which worried me enough to see the Doctor. I had a mammogram and all was thankfully fine.
Palpitations and skipped heartbeats, which again worried me enough to see the Doctor. I had a 24 hour Holter monitor fitted, which showed the electrical activity of my heart was abnormal but this was put down to hormones and no-one seemed concerned (they weren’t the one whose heart was having a hissy fit!)
I had several episodes of what felt like strokes – suddenly feeling like I’d been coshed over the head, saw stars, then struggled to speak. This was usually followed by crashing blood sugar levels. Very scary. I think these were my version of a hot flush – trust me to be different.
My migraines increased in both frequency and severity.
Periods of anxiety, which is something I’ve never suffered from before.
I started feeling poleaxed by exhaustion, which was quite different from the poisoned, fluey exhaustion of my M.E. or the over-work exhaustion of my hEDS.
My brain fog increased.
I gained yet more weight (aided by out-of-control munchies), felt bloated with water retention and my breasts were often massive and very tender.
My periods became heavier and more clotty, but nothing uncontrollable.
In years 7-9 I’ve begun transitioning from peri to actual menopause and am now regularly skipping periods. My symptoms have, not unexpectedly, changed again:
The shooting breast pain has gone, hurrahhh!
As I’m no longer having periods every month I’m not having to deal with crippling endometriosis and adenomyosis pain for which I am truly, truly thankful, although it hasn’t stopped entirely (see further down the page).
My skipped and pounding heartbeats have largely gone, only making an appearance on the very odd occasion.
I am no longer bloated with constant water retention.
I’ve only had one stroke-like episode in the last 6 months, though it still frightened me half to death.
My mast cell disease-related hives, itchy skin and constant peeing have improved 😮.
On the downside:
My Ehlers-Danlos Syndrome is much, much worse.
My back pain, from which I’ve suffered all my life but was under-control, is the new bane of my life and my legs often feel numb.
My hips are torturing me. They are bearable during the day, but the second I lie down to sleep at night they send shooting pains down my legs which makes sleep impossible.
My already present brain fog has been severe. It reminds me of the days when I was bedridden with M.E. and feels like I’ve been drugged.
Exhaustion has been crippling and not helped by ongoing insomnia.
I’ve lacked motivation to do anything, which is very unlike me.
My moods have been up and down, either irritated by everything or completely overwhelmed by life and tearful. Again, this is very unlike me as my mood is usually stable.
My migraines have been dreadful and during Christmas 2020 I had one which lasted 8 days solid.
I’m as fat as a whale. Seriously, I have never been this heavy in my entire life despite not eating any differently to how I always have. In fact, I eat less.
I am having daily, and fairly severe, blood sugar crashes. I have breakfast at 8am and by 10.30am I have the shakes and am ravenously hungry. I then eat a cooked meal at lunchtime, but my blood sugar still tanks at 4.30pm. As someone who has had excellent glucose control my whole life I’m finding this all a bit bizarre.
My entire body is stiff and I ‘ummpff’ when I get out of a chair. I’d be lucky to score 1 on the Beighton Scale, let alone my previous 8!
My muscles are definitely weaker, my legs in particular but I also have no power in my hands for taking lids off jars or writing.
My skin is very dry and starting to sag everywhere.
My lady garden still itches like I’ve got crabs.
Just in the last five months or so I’m having hot flushes during the night which wake me from sleep. Despite the fact it’s been -10C here in the UK this past week, at 2am most nights I’ve had to shove back all the covers to get the furnace which is my body to cool down. Within 5 minutes I’m then freezing and huddled back under the duvet shivering. This can happen 2 or 3 times each night. They also happen during the day, but aren’t as troublesome.
During peri-menopause I felt like my symptoms were manageable (stroke-like episodes aside which frightened the life out of me), but the past 2 years the whole menopause thing has become harder to cope with. The worst aspects are the profound exhaustion where I literally don’t have the energy to get off the settee let alone cook a meal, and the brain fog which is so bad at times I simply can’t function. I have aged overnight and it’s very disconcerting to look in the mirror and see some random stranger you don’t recognize staring back at you (I genuinely mean this – the ‘me’ I’ve seen my entire life has gone and it’s like my face has been replaced by someone elses!).
On the plus side, I can’t describe how fabulous it is not to be tortured by severe period pain which I’ve put up with every 4 weeks for forty years! However, my body does still seem to be following a 28 day cycle in as much as I get ovarian pain mid month, get water retention the week before my period would be due then pee for England the week after. My emotions are also still definitely cyclical, with days of irrational irritability, followed by days of weepiness for no good reason. I also still have low levels of anxiety which I’ve never had in my life until I hit menopause. In November 2020 I spent the entire month with grumbling period pain which felt like it would never end, but after my 28 day cycle would have finished it eventually went and so far hasn’t come back.
So, that’s where I’m currently at. Despite my symptoms I’ve never considered any form of treatment, because so far it’s nothing I can’t cope with. It’s not pleasant by any stretch of the imagination, but I’m not so desperate that I need to resort to medication not least because it would probably bring on mast cell disease-related anaphylaxis!
I’ve just gone 3 months without a period, but I’ve gone 4 months without Aunt Flo showing up before now and then she arrived on the doorstep out of the blue so I’m not counting my chickens just yet! After 9 years of constantly not knowing where my body is at I’ll be glad when it’s all over I’m not gonna lie.
The brain fog, emotional havoc, insomnia, pain and profound exhaustion have been difficult to cope with coming on top of the fact that my parents are now very elderly and need lots of care. For women with children there is the extra burden (for want of a better word) of teenage tantrums or adult children who are having babies of their own and needing extra support, and if you add in a full time job plus a home to run it’s a wonder any of us are still standing past the age of 50! It’s a very challenging time for most women and not something we are ever warned about or prepared for, let alone given any credit for or help with, which surely has to change and change soon.
Hopefully when I next update it will be to tell you that I am finally in Menopause, ie I have gone 12 months without a period, though I’m painfully aware that symptoms can carry on for years afterwards. Something to look forward to then 🤪.
Not unexpectedly, the UK has begun 2021 back in national lockdown, our third of the pandemic. The new strain of Covid we have here in Britain is 50-70% more infectious than the previous strain, which boggles my mind. In just 24 hours yesterday, 60,000 people tested positive for Covid (a new record) which means in some areas of the country 1 in every 40 people are infected 😮 We also had another 1,375 deaths in just one day, bringing our total to over 80,000 souls. My brother’s best friend’s wife died of kidney failure due to Covid yesterday – she was 62 and previously fit and well. Our hospitals are full of Covid patients and many are on critical alert. My local hospital has had to transfer some patients to the other side of the country as they are at capacity. I think it’s fair to say we are all more than a little bit scared.
America also had its highest ever number of new Covid cases this week, with 250,000 reported in just one day. Over 100 people every hour are losing their lives to coronavirus in the States, which makes the storming of the Capitol building even more insane. Leaving the criminality aside, that anyone would smear blood and faeces, which could be infected with Covid, in public areas where people work is beyond words. The world watched on in horror, disgust and despair 😥.
The vigilantism has already started again where I live. It was just the same during the last lockdown. Today, I pulled my car into a layby next to a public footpath, less than 1 minute’s drive from my home, to take Bertie out for a walk before carrying on into town to help my Mum. As I was parking up, I spotted a man sneakily taking a photo on his phone of my car registration. Apparently it’s fine for HIM to be exercising on the edge of the village but not me because I’m in a car. Just to be clear, the rules state:
You can continue to exercise alone, with one other person or with your household or support bubble. This should be limited to once per day, and you should not travel outside your local area
you can travel for outdoor exercise. This should be done locally wherever possible, but you can travel a short distance within your area to do so if necessary (for example, to access an open space).
If you remember, two people had a go at me during the first lockdown for parking up and walking my dog on the outskirts of my village despite the fact I live there. I refuse to be an easy scapegoat for people’s anxieties and frustrations a second time simply because I’m a woman on my own, so if I find out who this person was and he’s put my car number plate on social media or otherwise he’d better have a good solicitor because I will fucking sue him.
On a much more positive note, my parents received the first dose of the Pfizer vaccine on Tuesday 😀. While this doesn’t mean they won’t catch Covid, it does mean that it shouldn’t make them really poorly. It also doesn’t mean that they can’t spread Covid, so they still can’t go out and if they do have to go out they still have to wear a mask and socially distance.
On to other news. The Doctor who came to see my Mum today and who was apparently “very nice” said her stomach hole was infected and has left her some penicillin. We already have an appointment up at the health centre on Wednesday for some blood work due to Mum’s on again off again diarrhoea over the past 4 months, so there was little else the emergency doctor could do and we’ll just have to see how Mum gets on over the next few days.
It all felt like deja vu for me. During the first lockdown last March my Dad became unwell totally out of the blue and I had to get the emergency doctor out, who diagnosed a bowel infection. This lockdown it was my Mum’s turn!
I finally finished my 5 picture series, with three days left to the competition deadline! To be honest I was sick to death of it towards the end, not least because two of the images had been a total nightmare to do. I’m not expecting the photographs to get anywhere, but they’ve kept me occupied over the winter and distracted me from the pandemic and my own shitty health. Speaking of which, I plan to do some updates in the coming weeks on my hEDS, MCAS and menopause – watch this space.
No only did my parents’ dishwasher breakdown this week, along with needing a new hob and cooker as I discussed in this post, my beloved electric blanket also stopped working. The controllers for this particular blanket are notoriously shit, so thinking it was just those which had packed up I paid £30 for some new ones, which worked for 2 hours before also conking. I can now conclude it’s my blanket which is faulty and I’m having to fork out £100 for a new one, which I really didn’t need right after Christmas. However, like many other electrical items the blanket is out of stock and isn’t due for delivery until the start of February 😮. I’ve also been without my fabulous boiling water dispenser since November, when it decided to go kaput. The dispenser is also out of stock, even at the company who makes it, so I’m having to use a regular kettle instead which is already making my wrists sore.
I increased my offer on the building plot I love by £5000 this week, but the Estate Agent hasn’t gotten back to me yet. Apparently the vendor has already turned down a £20,000 higher offer than mine, though it was for the building plot plus a 4.5 acre field which is available for sale separately. So I’m not holding out any hope my offer will be successful. Other than that, there are zero properties coming up for sale here. The situation is absolutely dire and I can see me still being in my tiny cottage come next Xmas 🙁.
To end on a positive note, Bertie finally seems to be over his recent vomiting spell and hasn’t been sick now for over a week, which is a massive relief. And my dog walker should be back to take him out tomorrow morning, which at least gives me a break from taking him out twice every day.
I must admit, I started off fine today having slept quite well last night for a change but after the care and worry with my Mum, and being secretly filmed by some fucking hypocrite despite doing nothing wrong, I’ve ended the day stressed and completely exhausted, so when I banged my head on the tumble dryer door taking my clothes out this afternoon I crumpled in a heap on the Utility room floor and had a good sob. It gave me a stonking headache though so I won’t be doing that again in a hurry 😂
I’d started my weekly roundup post this morning later than usual, due to some competition stuff which needed sorting out for my Camera Club and which took longer than I’d expected. So I wrote a couple of paragraphs before taking Bertie out at 9am, planning on finishing the post when I got back. Only I didn’t get back until noon!
I ring my parents every day just to check they are OK and this morning I thought I’d chat to them to pass the time while I was out with the dog, but my Mum answered the phone sounding dreadful. She said the tablets she got off the Doctor on Friday seemed to be helping her week-long diarrhoea, but she still had no appetite, was much more breathless than normal, kept going hot and cold and just felt really poorly. As these can all be symptoms of Covid I wanted her to take a Covid test but she flatly refused and I can’t make her. She did say, however, “when you come into town tomorrow could you have a look at my stomach? I have a hole in it and I think it’s infected”. Say WHAT?!
I quiz her and she tells me that she had surgery 40 years ago and they didn’t stitch the wound up properly, leaving a tiny hole at the end. It’s never bothered her until now, but she says it’s sore and she’s been asking my Dad to put a dressing on for the past week because it’s been all gunky. I ask her why on earth she hasn’t mentioned it to either me or the doctor when she spoke to her on Friday and she replied “I didn’t think it was important and I had enough on my plate with the diarrhoea”. I couldn’t get her to understand that if she has a raging infection that was probably the reason she had diarrhoea in the first sodding place! I tell her I’m coming through to have a look as soon as I’m back with the dog.
This is what she’s been hiding. The black shadow in the middle is an actual hole in her skin, then she wonders why she’s been feeling so unwell 😕. I immediately ring the non emergency 111 number as my local surgery isn’t open on Sundays, expecting to be on hold for hours as they are so busy due to Covid, but actually I got straight through and a Doctor rang me back within the hour. She is now coming out to see my Mum this afternoon.
While I was waiting for the Doctor to ring me back, I put my Mum’s tablets up for the week. She takes 19 pills every day but usually copes with doing them herself on a Sunday morning, however today she simply wasn’t well enough. I then made her a small bowl of fresh pea and ham broth, which my sister-in-law had kindly sent down the day before, telling her she must try to eat something. I think just the fact I was there was comforting to her, and I left her tucking in to the soup and waiting for the Doctor to arrive.
Mum and I have talked every day for a week about the fact she isn’t feeling well. I’ve also visited three times and she’s spoken to the Doctor, yet she hasn’t once mentioned the fact she has an infected hole in her stomach! And it’s not the first time she’s hidden stuff – it happens regularly and drives me to insanity. How can either I, or the Doctor, help her when she doesn’t give us the full picture? 😕
So my roundup post will be a little late today, when hopefully I’ll be able to fill you in on what the Doctor said. It’s just another day at the office in the life of a Carer, but they happen so regularly it’s the reason I know I’ll never get a holiday and why it’s 10th January and I still haven’t had the chance to take down my Christmas decorations. I’m also out of clean underwear, having not had the energy to do any washing all week.
As you all know, I was absolutely exhausted before Christmas. It had been a very long, very stressful year during which I’d been without a cleaner at my house, and for months during the various lockdowns I’d helped my parents out more than I usually would. So over Christmas I was supposed to be “on holiday” for 3 weeks. “Pretend I’m on beach in Greece” I told my parents “and if the house is on fire, ring my brother”. Even as I was saying it, however, I knew my holiday was doomed. I haven’t managed a holiday in the last 10 years, so I didn’t see why this year would be any different.
For a start, my dog walker tells me she’d like Christmas off. Which is fair enough, if annoying and means I won’t get a single lie-in while I’m “on holiday”, but after her 2 week break she was due back on Monday this week. Or so I thought, until I got a phone call on Sunday night to say she needed to self isolate because she was taking a friend to hospital on Wednesday for an operation. What has that got to do with dog walking?! She gets in her car, drives to my house where I have lived in total isolation for nearly a year, stands 2m away from my front door, I open said door and the dog toddles himself out. She then walks him in the countryside, where she doesn’t meet a soul, before getting back in her car and driving home. How, exactly, is any of that an infection risk?!
So she was then due back on Thursday, but at 8am Thursday morning I get another phone call to say that being as though it’s snowy weather she won’t be coming (even though the roads are clear). But I have Tesco booked for delivery so I can’t take the dog either, who has to plat his little legs for 2 hours because although he will pee on the patio (I don’t have a lawn) he won’t poop 😥.
Dog duties aside, nothing else went to plan over the holidays. The week before Christmas my Dad’s best friend died suddenly of a heart attack. My Dad was asked to speak at the funeral and there was no way I was letting him go on his own, not least because it’s a 1½ hour car journey and I didn’t want him driving while upset, plus he hates public speaking and I knew he’d need me there for support. So that took up a whole day, including me having to do a picnic lunch.
Then three days before Christmas, I learned I’d lost the Adjudication against TalkTalk for not providing my parents with a properly working telephone line. The reason I was given by CISAS was that I “hadn’t proved there was a fault”. Are they having a laugh? Do they think I would spend 6 months trying to get TalkTalk to fix a line problem if it didn’t exist?! So I’ve now had to issue Small Claims court proceedings against TalkTalk, the paperwork for which took up several hours of my time and energy over the “holidays”.
Then there are the 2 roast dinners I’ve cooked for my parents, their car tax I’ve had to do online as it was up for renewal on 1st Jan and the caster I’ve had to remove, measure and order from B&Q for their side table.
This week, I hadn’t planned on visiting them. Only when I spoke to my Mum on Wednesday she told me that their dishwasher had stopped working. It’s 11 years old so I didn’t think there was much point in spending money getting it fixed, plus we’d already discussed before Christmas the fact that their hob and integrated cooker are now 16 years old and wouldn’t be lasting much longer, so being as though they now need a dishwasher I thought I might as well get all three at once. So I spent 3 hours online, looking at various dishwashers, hobs and ovens. They can’t cope with digital, and my Mum’s shake is so bad she needs knobs to turn not flat buttons to press, which limited the choice. Eventually, though, I whittled it down and went through to town today, plugged my laptop into the telly and talked them through each item.
We decided between us on the best products and decided to pay AO.com to remove the old ones and recycle them, plus fit the new ones. But when I went to go through the checkout, it wanted to charge me £120 connection fee for each item. FFS. So then I had to ring them. I spoke to a chap who annoyingly talked for England, tried to sell me extended warranties, but did eventually only charge me the 1 connection fee. Super and they’re coming next Saturday.
During all this, my Mum is sitting slumped in her chair looking terrible. I ask what’s wrong and she tells me she hasn’t been well for days as she has awful diarrhoea. It must be bad, because she’d rung the doctor this morning without telling me and the GP had said she thought it was a bug and issued a prescription for some diarrhoea tablets. Only, I knew that wasn’t the full story.
My Mum has had diarrhoea on and off for months. She’s also been feeling full quickly recently, plus food has been getting stuck in her oesophagus – all of which I’m fully aware can be signs of a serious problem. However, she hadn’t told the Doctor any of this, so I ring the surgery and ask the Doctor to ring me back. She was lovely and when I explained how unwell my Mum had been for weeks, plus all her symptoms, she was clearly concerned. I now have to take Mum for a blood test on Wednesday and she has been fast tracked under the Cancer rules for tests at the hospital.
After I’d got all that sorted, my Dad told me he’d had a letter from the building society to say that their 2 regular saver accounts needed attention. So I had to ring the B.S. who told me that my parents had been sent a letter in mid December regarding their saver accounts coming to an end but they hadn’t received a reply. However, my Dad tells me he can’t find the letter. So the lady at the B.S. said not to worry, just write in to the branch with what they wanted to do regarding the accounts. But after I put the phone down, I asked my Dad again if he was sure they hadn’t had a letter about it and he said “oh, yes, it’s in the bedroom”. FFS-with-knobs-on. So he gets the letter, I fill out the enclosed forms and my Dad said he would put them through the B.S. letter box that afternoon as he was going to Morrisons to pick up Mum’s prescription.
A bit later on, my Mum said “have you put those envelopes out ready to take with you to Morrisons?” to which my Dad replied “oh heck, I put them away!” and stomped off to find them.
My Dad then tells me that he’d had a letter from Green Flag, to say their breakdown cover ended yesterday and asking did they not want to renew? I knew I’d had a conversation with my parents about their breakdown cover before Christmas and thought it was all sorted, so I asked my Dad to show me the letter which stated that he needed to ring up and renew as it doesn’t happen automatically. So I ring up Green Flag and get that sorted.
Before anyone asks why my brother couldn’t do any of the above, it’s because a) my brother isn’t allowed to visit due to Covid and b) I’m the only one with legal authority to act on my parents’ behalf and I’m the only one who has access to their bank account so that I can buy things on their behalf.
I have my lunch, which I’d taken with me, after which I take an electric meter reading as that was due, and change the batteries on both their video doorbell and their Sky remote.
By this stage it was nearly 4pm, my head was thumping, I was beyond knackered and I still had Bertie to take out when I got home. I think it’s fair to say there hasn’t been much any lying relaxing on a beach during my “holiday”. The closest I came was a 30 minute soak in the bath on 27th December where I read my new book of quotes I got for Xmas. Other than that, it’s been business as usual 😕.
I had hoped to write something profound and meaningful on New Year’s day itself, but a) I had a stonking migraine which is still lingering and b) the whole being wise and profound thing is far too much fucking effort when I can barely decide what to have for breakfast 😆.
I don’t think any of us are sad to see the back of 2020, but I think it’s a tad optimistic to think that 2021 is going to be any easier at least in the short term. Over Christmas, most of the UK (my area included) went back into lockdown as the new massively-more-infectious strain of Covid took hold and numbers went through the roof. It is now estimated that 1 in 50 people in England has Covid, which is a really scary prospect. More of my extended family went down with it over the holidays, as their kids brought it home from school (with zero knowledge I hasten to add, as they had no symptoms whatsoever).
The light at the end of the tunnel is that the vaccination programme has now begun. However, my Mum (who is 80 and in the highest at risk category) has not been contacted yet about getting the jab. I’m furious because her neighbour, who is also in her 80s but has no underlying health conditions, has already had it. In fact, my 50 year old sister-in-law has had it. WT-actual-F?!!!!!!!! Anyway, enough about the pandemic cos I have current-viral-fatigue 😉.
I had a big think over Christmas about my plans for the coming year and there is loads I want to do. My list goes something like this:
Move House. Yes, I know that was on the list for 2020 (and 2019 and 2018 and 2017) but even if I have to live in a fucking tent I am moving this year! I put an offer on a gorgeous plot of land in November to build my own bungalow, but it was rejected. However, the plot has been for sale for a year now, so I contacted the Estate Agent and she is ringing me tomorrow to discuss.
For the past two months I have been working on my first photographic series. It’s 5 images with the common theme of ‘solitary confinement’ but from the perspective of our pets. I’m planning on entering it into some world-wide competitions this month and even if it doesn’t get anywhere I’m proud of it. I can’t show it to you as it needs to be unpublished in order to adhere to the rules, but I’ll let you know if I get anywhere!
I’m now planning my next picture to enter into a hugely important yearly competition. I’ve done really well in this particular comp for the past two years, but that’s no guarantee they’ll like this year’s picture so I feel a lot of pressure for it to be good. I’m planning on doing it in my local Church (as we’re in lockdown no-one is using it and I have access to the key) and am roping 4 of my neighbours in to help. Watch this space!
My third photography goal is to start selling greetings cards and wildlife prints on my website. I made a start at setting that up over Christmas, but my head was crap much of the time so I didn’t make as much progress as I’d hoped.
I’m also being featured in an influential local magazine this month, so that’s exciting 😀.
If David Attenborough does a serious on whales he’ll be sending his crew round to film me. I have never been this fat in my whole life and it cannot carry on, not least because I don’t have the money to buy a whole new size 14 wardrobe 😮. But losing weight is eluding me. Prior to the menopause, if I wanted to shed a few pounds I just cut down my portion sizes a bit and stopped eating so many gummy bears, but it’s no longer that simple. It seems even the air has calories when you’re 53 and I am now contemplating starvation as the only way forward.
So that’s the first half of 2021 taken care of 😉. I think it’s hugely important to set yourself goals at the start of the year, along with a detailed time-scale and plans of exactly how you’re going to achieve your aims , otherwise the days simply blend into themselves and before you know it you’re putting the Xmas tree back up. It appears my ambition is to starve in a muddy tent, but no-one said your dreams have to be perfect 😂.
Well my lovely readers, I’m off to take some more Ibuprofen for the 4 day old migraine throbbing away behind my eyeballs, then get wrapped up to take the mutt out (it was -6C here over the holidays and has barely risen above freezing all week), after which I’m putting my Xmas tree back in the shed til next December.
Happy New Year! I know 2020 was shit, but we’re still here and that’s the main thing 😊.
I have a love hate relationship with Christmas. I love the twinkly lights, the carols, the prezzies and the one-day-only guilt free pig out on Ferrero Rocher, but when you live in a dysfunctional family Christmas is a ticking bomb ready to go ka-boom at any second and I always spend the entire time with a concrete knot in my stomach waiting for the blast.
My Mum has spent many a Christmas day rat arsed and belligerent, bullying my Dad to within an inch of his life, and it’s so hard to pretend to be jolly when all you want to do is walk out the door and never come back. So I was thankful this year that on Christmas day she reigned it in a bit and for the most part we all had a nice time. I was, however, given this for my Christmas card. As far as I’m aware I’m not like a daughter, I am their daughter, unless they’re trying to tell me I’m adopted 😆.
I did get some absolutely wonderful presents, though, the main one being a Roomba. For those not in the know, a Roomba is a battery operated robot vacuum cleaner which looks like a small flying saucer. It spins round hoovering the house on its own and when it’s done it toddles itself back to its docking station to re-charge. I’ve had a Roomba before and loved it, but technology has moved on in the 8 years since I bought my first Roomba and this one not only hoovers but wipes the floors as well. It’s freakin’ awesome!
We haven’t had a roast dinner on Christmas day in years. It was always a stressful disaster trying to open gifts, answer phone calls and cook a meal at the same time, so we usually have a light lunch on Christmas day and go out to a restaurant for our roast on Boxing Day. Only this year Covid put paid to that, so the plan was for me to go to my parents’ on Boxing day to cook. I’d decided to prepare the veg while I was there on Christmas day, though, so I tootle off to peel the spuds. Only there is no vegetable peeler in the drawer. After much searching, we decide my Dad has thrown it out with the peelings from their last meal, so I make do with a knife. I then go in the fridge for the lovely honey covered ready peeled parsnips I’d bought from Tesco (everything was designed to be as easy and quick as possible!), only they’re not there. After more searching we discover my Dad has put them in the freezer. My Mum prepares to go apeshit, but I tell her to shut the fuck up and say nothing, all the while knowing that as soon as I leave she’ll rub the mistake in my Dad’s face and we’ll hear about it til next Christmas. Eventually, however, everything is ready and I leave.
Fuck, it’s gone dark. We’re having yet another power cut. What causes the leccy to go off at 8am? I now have no wifi, or electric blanket, or central heating and I haven’t had my breakfast yet. Bloody marvellous. Hold on while I tether from my mobile phone.
I told my mum I’d be there on Boxing Day at 10.30 and we’d eat around 12.30. I don’t eat meat and my parents were having cooked turkey courtesy of my sister-in-law so I just had my Quorn fillet, the veg and pigs in blankets to do (Aunt Bessie provided the yorkshires and stuffing, Bisto provided the gravy and my lovely niece had made us a cheesecake for pud!).
But when I get there at 10.30am the oven is already on, the roast tatties and pigs in blankets are in, my Mum is shit faced and one of the first things she tells me as I walk in the door is how my Dad put the parsnips in the freezer. FFS 🙄. So I tell her only God is perfect, take the items out of the oven and turn it off, otherwise we’d be eating dinner for breakfast. It was then really difficult to cook a meal when some of the items were already half baked (I have no clue how long they’d been in the oven), however I managed it and we didn’t starve. My Mum then promptly went to sleep, my Dad sat and read the local paper and I took the broken caster off the side table they both use in the lounge so I can get a replacement caster from B&Q. My ‘holiday’ isn’t going well, I’m not gonna lie.
There were three highlights to my Christmas. The first took place on the Tuesday evening before, when my new neighbours invited myself and our other two neighbours into the driveway for a socially distanced get together. We had twinkly lights, carols, warm mince pies and hot mulled wine (or in my case hot spiced cranberry juice) and it was lovely, if bollock freezing cold. The second highlight was a surprise Zoom I set up with my brother, sister-in-law and nieces on Christmas Day, being as though we didn’t want to risk seeing each other in person. It was my parents first ever Zoom and they absolutely loved it. And the third highlight was coming home on Christmas day, getting into my pjs and my warm, snuggly bed and editing some photos. After the chaos and stress of my parents, it’s always nice to come home and relax, even though it means I’m all alone.
It’s been a strange Christmas all round this year, but however you spent yours I hope it was filled with love. Until next year my friends, stay safe xoxo
2020 will go down in the history books. We’re still taught in school about the plagues of old, and more recent mass killers like the flu pandemic of 1918, and it’s weird to think we have been part of events which will probably still be discussed in a hundred years time.
The start of the pandemic back in February/March was scary. We didn’t know much about coronavirus and every person over the age of 60 who contracted Covid seemed to be dying. Two people I know passed away from the virus in the first month, so it hit home to me early on that this was a very serious situation.
We lived through panic buying, empty supermarket shelves, unavailable food delivery slots, vigilanteism and almost total imprisonment in our homes. Social distancing, furlough and PPE became the new buzz words.
I was glued to the TV, watching the death figures climb and tuning in to the Prime Minister’s daily briefing. When he himself succumbed to Covid I think the whole country held its breath.
We haven’t survived as a species for thousands of years, however, without being able to adapt and mask wearing, hand sanitizing and Zoom quickly became the new normal. We’re now all expecting a third lockdown come January and we’re just shrugging our shoulders in calm resignation (while still panic buying bog roll 🙄).
For people in care homes, many towards the ends of their lives, the pandemic has been particularly cruel. My own parents don’t have access to technology and have felt very cut off and isolated. However, because of Covid, at least 80,000 people in the UK (nearly three times the entire population of my small town) aren’t alive to celebrate the holidays. So I remind my parents every chance I get, that rather than focusing on not being able to physically spend Christmas day with their children and grandchildren they should celebrate being alive and how lucky they are to still have their friends and relatives. When you talk to people who have lost a loved one, their number one wish is to hear their voice just one more time. 80,000 families would sell their souls to have a Zoom, Skype or phone call from their loved one on Christmas Day, and for those of us fortunate to have come through the pandemic we should be hugely thankful that although we can’t touch our nearest and dearest we can still speak to them.
Our economy is in tatters but it will survive. It’s survived every other economic crisis in history and this one is no different. Many people are facing financial hardship in the coming months and it will be a stressful and very anxious time, but eventually “this too shall pass”. When you’re dead, however, you are dead – there is no coming back.
It’s easy this year to concentrate on the negatives. Let’s face it, there’s enough to choose from. But I’m determined to focus on the positives. I have survived. My friends have survived. My family have survived. You my lovely readers have survived. And at the end of the day, that’s all that really matters.
To any of my readers who have suffered loss this year, and for whom this Christmas will be painful and difficult, I send big hugs and lots of love. Be gentle on yourself and reach out for support if you need it.
To everyone else, Bertie and I wish you a very happy, joy filled Christmas. We made it through and I am thankful!