Tag Archives: MCAD

Weekly roundup

I haven’t been feeling great this week.  The weather’s been boiling (30C) but I actually fare better in summer on the whole, and I haven’t been doing anything out of the ordinary.  So I was a bit stumped as to why I was feeling so exhausted, nauseous and generally rubbish when on Friday night Aunt Flo rocked up.  She’d been awol for 60 days this time but I should know better than to think she was gone for good.  So much for the average British woman entering menopause at 51 – I’ll soon be 53 and that bitch is still on the premises.

I had a lovely day on Wednesday, meeting my bestie down by the river for a picnic.  The weather was glorious and for the first hour we had the place to ourselves in blissful silence, but then more people started to arrive including a group of eight boys aged around 10 years old.  They hollered, squealed, screamed, dive-bombed the water and generally caused mayhem as 10 year old boys do and it was like a cheese grater on my brain.  I’m still pretty noise sensitive and simply can’t handle that level of racket, so I reluctantly had to call it a day as every nerve end in my body was protesting.

My bestie and I were discussing how overwhelmed and exhausted I constantly am, and how busy my life is.  I think she wonders what the hell I do with my days and to be fair so do I at times, so I decided to write a diary for a week and log all my activities.  Turns out living on your own and having to do every single little thing with no help, plus owning a dog and running my parents lives and home is a lot.  Add to that my photography, which I love but is massively time-consuming (you don’t get to be internationally successful at anything in life without a shit load of hard work), and it’s a LOT.  What I learned from completing the diary is that I’m doing the best I can to balance my caring duties, the essentials of running my life and home, and trying to do some things I enjoy like my photography, while also managing chronic ill health not to mention 8 years of peri-menopause and enough rest to function.  It’s a struggle and I don’t always get it right, but I need to give myself more credit for how well I cope, plus stop being so hard on myself and comparing my life to anyone elses particularly those who aren’t in the same leaky boat as me.

Thursday I found out I was one of 10 winners of a massive global photography competition.  I still can’t quite believe it.  Little old me, propped up in bed in my tiny cottage in the middle of nowhere!  The overall winner will be announced during a Zoom ceremony in September and the prize is a trip to Oman 😮.  Not that I am well enough to go even if I were chosen, but that didn’t stop me Googling Oman and daydreaming!  The organization are also going to donate €30,000 to Covid-19 research, which is more important than any holiday.

I was clearly on a photography roll this week, as the next day I discovered I had won 2 gold medals in an international photography exhibition based in India.  Go me! 😉

The weekend has been taken up with thinking about the bungalow and asking the Universe to help me secure it if it’s in my best interests.  The builder got back to me to say he was still interested in doing the work which is great, however I’ve written to my buyers to ask if they still want to buy my house and have had no reply as yet and that’s worrying as they were so keen – the thought of the effort involved in putting my house back on the market fills me with dread 😦  I want the bungalow so much I can’t even put it into words but will just have to try and relax and go with the flow, as much of the situation is totally outside my control.  I’ll keep you posted.

Weekly roundup

When your illness is being managed well you get complacent.  Cocky.  You do stuff that, when your illness isn’t well managed, you wouldn’t even consider because you think there will be no consequences.  I did that yesterday.

I’ve put quite a bit of weight on in the last couple of years and am over 9stone (126lbs/57kg) for the first time in my life.  I’m not eating or exercising any differently, it’s just middle age spread due to menopause and my metabolism slowing down.  I have my main meal at lunchtime because if I eat a large meal in the evening when I’m in bed it makes my reflux so much worse, then I have a sandwich or soup or whatever at night.  So I thought I’d swap my evening food for a Slimfast shake for a couple of months to see if I could shed a few pounds.  Big mistake.

All Slimfast basically consists of is vitamins, minerals and sweetener to which you add milk (which I tolerate well) to make a shake.  Perfectly innocuous right?  My mast cells didn’t think so and after only 3 mouthfuls had a complete hissy fit.  I’d forgotten how scary anaphylactic reactions are and how crap they make me feel 😟.

I’d already had a reaction to a new food this week, though it wasn’t the same type of reaction.  I bought a plain scone from Tesco, the ingredients of which shouldn’t have bothered me (I buy the Finest range wherever possible as they contain so much less additives etc.).  But they did.  My throat and tongue were prickly, tingly and itchy and my lips went slightly puffy.  I get the same thing if I eat anything with apples in, or the strawberry flavoured jam used in commercial doughnuts and biscuits.

Note to self: stick to what you know, even if you are so sick of eating the same old shit you want to scream.

Wednesday evening was our weekly zoom meeting at camera club.  It was our annual competition and I swept the board.  I should have been delighted but all I felt was fear.  After I started winning everything at my last club there was a lot of jealousy which turned into outright nastiness in some quarters and I do hope that doesn’t happen again.  I did get 4 lovely messages of congratulations, though, so at least some of the club members don’t hold my success against me.

I’ve succeeded in weaning my disabled friend off my help with his online grocery shopping and he had his first Tesco delivery this week.  He needed quite a bit of help sorting it out, which I don’t mind – I was confused.com when I first started online grocery shopping and it will take a few weeks for him to get the hang.  It felt fantastic to shed at least one of the huge responsibilities I’ve shouldered for the past 4 months.

Despite my warnings of infection and death my Dad is determined to go to the shops now lockdown is over, even though there is nothing he needs which is urgent or which I can’t get him.  So I’ve ordered him some masks to wear.  Initially I couldn’t get him to put one on, but when he saw a few other people using them he reluctantly agreed.  Why doesn’t he realize that at 80 years old he is more at risk than all the young people he sees out and about, and even if he got Covid and didn’t get sick he risks passing it on to my Mum who would die?!

As I’ve been getting a lot of migraines recently I decided to try a new pillow in bed.  I’ve gone for a memory foam for side sleepers which is supposed to be temperature regulating as I do get boiling hot in bed these days, and I tried it for the first time last night.  It felt very hard compared to my soft duck feather & down pillow and although it supported my head and neck well my back complained a bit as it was at a steeper angle.  The jury is out and I’ll just have to see how things go over the next week or so.

Today is Father’s Day and I’m taking my parents for a car picnic as it’s going to rain most of the day.  I feel absolutely knackered this morning and all I want to do is stop in bed all day and rest, however I’ll slap my usual smile on and try and ensure my Dad has a nice time because even though my parents drive me to distraction I know how lucky I am to still have them.

Stay safe my friends x

 

 

MCAS Update

Anyone who has been following my blog for a while knows that my mast cells hate stress.  My number 1 mast cell degranulator is drugs.  My number 2 is high histamine foods.  But my number 3 has always been stress of any kind.

When I’m under acute stress I flush, get pins and needles, severe brain fog, can have what feels like a seizure, oesophageal spasms which make me retch and retch, severe nausea, painful bowel cramps and just feel really unwell.

When I’m under chronic stress I break out in hives, itch all over, stop sleeping (histamine is wake promoting), stop pooping, start peeing like a racehorse particularly during the night, my pain levels significantly increase due to muscle spasms particularly in my back and I feel generally exhausted and run down.

Virtually the entire world has been under stress during the pandemic.  Acute stress in the initial weeks, and chronic stress as the months have worn on.   In the initial few weeks I was also dealing with my acutely unwell Dad and the bed bugs in my house, not to mention staying up til midnight each week to try and get a grocery delivery slot on which 5 vulnerable people were depending for food, and my sister-in-law started her chemotherapy about which we were all concerned.  It was a LOT to be dealing with, when I am unwell myself and on my own with zero support.

3 ½ months down the line I’m still doing shopping for 5 people, am having to solely look after my parents while having no help in my own home, eg. my cleaner, and am helping my very disabled friend with all sorts of issues.

By now, I fully expected to not be sleeping, be covered in itchy hives, be peeing for England, to not be able to poop and to be utterly exhausted.  And I am utterly, utterly, exhausted, but few of the other symptoms have materialized.  In particular, I have not had a single hive this entire time and am sleeping like a baby 😯.  It’s nothing short of miraculous.  My pain levels, however, are much worse and I have had a very sore throat and swollen glands for the past few weeks but these are symptoms I associate with M.E. and hEDS, rather than MCAS – I don’t get flu symptoms as part of my mast cell disease and the pain is very different to the pain from hEDS.  In fact, my hEDS is particularly bad at the mo, but that’s a post for another day!

Looking back, I’ve had mast cell disease since the day I was born but it didn’t explode and become a life-threatening issue until I was 44 – right around the time I began peri-menopause and my hormones started roller-coasting.  I am now transitioning into Menopause and am wondering if my now almost total lack of hormones is helping to stabilize my MCAS?  I can think of no other explanation as to why my mast cells aren’t having a total hissy fit to the massive stress I’ve been under during the lockdown.

Having said all that, there is one symptom which has been much, much worse lately and that is my migraines.  I am being tortured on an almost daily basis.  However, 6 weeks ago I changed the pillow on my bed so am wondering if my new pillow isn’t supporting my neck while I sleep.  I might look into ditching it and getting a proper foam support one instead.  Watch this space for the results of that.

I know that I will never be free from MCAS as I’ve had symptoms since I was a baby.  However, if it reduces to the point of just being an occasional or mild problem as it was when I was a child and young adult I’ll be a very happy bunny and it would be an interesting topic for researchers to look into.

Weekly roundup

Tuesday I made my annual trip to a nature reserve on the hunt for Dragonflies.  We are allowed to travel now for a day out, the weather was a perfect 24C with a slight breeze, and I met my bestie there after not seeing her for three whole months!  We each took a picnic and had a good old catch up before I got my camera out to try and capture the beautiful, but elusive, little critters.  I took loads of pictures of mating Damselflies which haven’t turned out well as they were too far away, but I did finally manage to get a shot of a Dragonfly in flight after 4 years of trying 😀.  I had an absolutely lovely day, which was sorely needed.

Four Spotted Chaser in flight

Four Spotted Chaser in flight

The rest of the week was spent preparing for my Mum’s 80th birthday.  She’s been so ill for so long it simply amazes me that she’s made it to the big eight 0 and I know I’m lucky to still have my Mum at my age.  As no-one is allowed in the house I’d planned to have just the family visit for celebrations in the garden, but after weeks of glorious weather the temperature suddenly plummeted to 11C, with strong winds and prolonged spells of rain.  Fucking typical.  So on Tuesday I went on Ebay and ordered a large Gazebo with sides which my brother erected in the garden.  I decorated it with bunting, balloons and candles and fed in an electric cable which meant I could plug in a halogen heater and an electric blanket to put over my parents – the very last thing I wanted was for them to be cold and uncomfortable.   I then had just a couple of people at a time visit her in the Gazebo, wiping the chair arms down with disinfectant before the next visitors arrived, which actually turned out fine.

We couldn’t have food as it would have involved everyone touching stuff, so made do with birthday cake on disposable plates and prosecco in disposable cups, distributed by me wearing disposable gloves!  All went well until 3.30pm when the wind really started to get gusty and the gazebo was in danger of taking off into outer space, so I had to call it a day and get the thing taken down quick smart.  To be honest, the whole event was absolutely and utterly exhausting for me and I’m still suffering the consequences days later, but Mum had a nice time and that’s the main thing.

My throat continues to be really sore and the glands in my neck haven’t gone down, so now that’s over and done with I really need to be resting, as my immune system is obviously not happy.   During the pandemic I’ve looked after everyone else and not had any energy left to look after myself and it’s taken a huge toll on my health.  Now lockdown is being relaxed I’m having to re-think what my new ‘normal’ will look like, as I can’t keep this level of activity up.   It’s really tricky, though, as my Mum will continue to be shielded until a vaccine is found so it’s not like I can just pay for help in her home or get help myself in mine 😕.   Something has to give, though, as I’m on my last legs.

My sister in law has her last chemotherapy today and she must be terrified because she’s had a really bad reaction to the last two treatments.  However, she can shortly switch to radiotherapy which takes place every day for 3 weeks.  At least it’s at the local hospital which is only a 40 mile round trip, rather than the big hospital which is a 140 mile round trip – you have to be thankful for small mercies.

Well, my stomach is rumbling so it must be time for breakfast.  Stay safe my friends and I’ll catch up with you next week x

Weekly roundup

The weather has been gorgeous this week and the UK has now officially had the sunniest spring on record.  Thank God.  Can you imagine 2 months of lockdown if it had piddled down the whole time and we couldn’t even sit the in garden?!

My big news of the week…………..fanfare please……………..is that my shit-for-brains neighbour has finally consulted a solicitor and been told that no, neither he, his customers or delivery vehicles have the right to park/offload in my drive and block my garage so I can’t get in or out.  It’s taken 4½ years to get to this point, even though I’ve been telling him the entire time that his easement gives him the right to “pass and repass” over my drive, not fucking park as it blocks me in!

Has he apologised for putting me through 4 years of stress, including reducing me to tears, and for the money I’ve had to spend taking legal action against him?  That would be a big fat no.  Instead, he sent a really nasty letter to my solicitor accusing me of all sorts.  Apparently I am intimidating, have logs delivered and tipped in the driveway, have oil & coal deliveries which block his access, have food deliveries which block his access, and tell my dog to bark at his customers.  Really?  For a start I don’t have the energy to be intimidating.  For seconds I’m on mains gas and don’t have a log burner, oil central heating or a coal fire (but my neighbour does who also has an easement over my drive).  For thirds I have a Tesco delivery once a week who park on the main road outside my front gate as my kitchen is right next to the front door (but no.3 is a holiday cottage and they have food delivered).  And forthly the entire village can testify that I tell Bertie to “shut up!” 100 times a day because he’s a Mini Schnauzer and they love the sound of their own voice – I have never needed to tell him to bark because he does it all day, every day (this morning his first woof was at 5.20am to tell me he was bored and wanted to get up).  Other than rip out his vocal chords, which I have threatened to do on occasion, I’m not sure how I can get him to shut up and people visiting my property are just going to have to get over it.  My solicitor has had to write back correcting his accusations and asking what exactly he’s going to do to stop his customers and delivery men blocking my fucking drive!!

Monday I made my first forage to a superstore in 2½months.  I really haven’t been shopping since before lockdown and it was totally bizarre to have to queue outside to gain entry (good job the weather’s been nice!), wipe down my trolley handle, only go one way round the store down narrow aisles while trying to stay 2m away from everyone, and queue for 20 minutes to get to a checkout.  I wore my heavy duty DIY mask which is blue and makes me look like a Smurf, plus disposable gloves which were removed before I got back in the car so I didn’t transfer germs to my keys, door handles, steering wheel etc.  There is a lot to think about and my poorly brain struggled to remember all the rules and choose stuff to buy :-/  I’ve never much liked shopping and I like it even less now, though I was still pleased to have finally got hold of some suitably pongy manure with which to mulch my borders!

My GERD is really bad atm, and I’m coughing my head off.  Can you imagine if I’d had a coughing fit in the middle of B&Q?  Part of me wanted to, just to see what would happen 😁.

I had a really bad dizziness episode out of the blue Monday afternoon.  I was at my parents house minding my own business, when the world lurched to the side and I felt like I’d necked an entire bottle of vodka.  Driving home was not for the faint hearted and I felt rubbish for the rest of the day.

Wednesday I had a sodding awful migraine and had to go back to bed after lunch as I couldn’t function due to the pain.  It didn’t ease and I had to miss my zoom Camera Club meeting that night 😥.  I’m still being plagued by migraines and they need to do one.  I’ve absolutely had enough of this menopause malarky and am hoping to do a blog post about where I’m up to sometime this week.

Thursday, I woke with a really sore throat and swollen glands.  Ordinarily I would assume I’d caught a bug, but I know for sure that’s not the case so it’s obviously my M.E. playing up.  It still hasn’t gone and is making me feel crap.

Also on Thursday, my niece was in the village visiting a friend so popped by out of the blue 😊.  At that time, we still couldn’t sit in my garden for a natter so had to chat over the garden wall with her stood in the main road, but it was still brilliant to see someone different and have a change of conversation.

Of course, our-leader-with-the-wild-hair announced on Friday that we can now meet up to 6 people in our gardens so long as we socially distance.  Whooo, hoooooo!  My Mum and Dad came for a drive out and we all sat and had a brew in the sunshine and it was fab-a-lous.

In amongst everything, the deadline for a competition I wanted to enter was looming so I had to crack on and get my images done.  The photos had to be taken in your place of lockdown, ie home, after 15th March.  I’m entering the Lockdown one you’ve already seen, but I also managed to do this one which I’m calling Surviving the Storm.  Don’t ask me how I managed to photograph rain and lightning, because if I told you I’d then have to kill you 😉.  I won’t hold my breath the pictures will do well, but it’s given me something to do.

That’s all my news for this week.  As soon as Bertie comes back from his walk I’m off to visit a nearby nursery to see if I can get some bedding plants – wish me luck and stay safe!

 

 

 

Weekly roundup

My roundup is a little late on account of the fact I’d forgotten it’s Sunday.  Is it just me who has no clue what day, let alone date, it is?!

I’d got half my garden project done when freezing rain arrived, after 2 months of almost continual sunshine.  It was a relief in a way because I was in agony and beyond knackered, so it’s given me a chance to rest and recuperate a bit. I’m really enjoying the achievement of doing a task I’ve thought about for years, but it’s not without cost to my health.  I’ve had a couple of days this week where I simply haven’t been able to get out of bed, and have been so zonked I’ve gone back to sleep after lunch – something I never usually do.  On the plus-side, my continual migraine finally seems to have bogged off for which I am eternally grateful.

I learned that a small number of staff at the Medical Centre in a nearby town have gone down with Covid-19 this week.  How is anyone still getting infected when we’ve all been on lockdown for 2 months and practising social distancing for weeks before that?!  You’re not allowed to visit the Medical Centre if you have any symptoms of Covid, so it’s not like the doctors should have been coming into contact with the virus in the first place, and even if the odd patient was infected but asymptomatic all the medical staff wear full PPE (ie gloves, masks, aprons) and are fastidious about infection control.  Very odd.

My sister-in-law had another really bad reaction to her chemo on Monday, and has been ill ever since.  She usually picks up by about Thursday, but this time she hasn’t yet made it out of bed and nothing is helping the nausea/vomiting 😥.  Thank God her last one is in 3 weeks time, then she can switch to radiotherapy.

We had another Zoom meeting with my Camera Club on Weds evening.  This time we tried a competition, which went remarkably well but didn’t finish til 10.15pm – I was so wired afterwards it was well after midnight before I managed to go to sleep, but it was still a fun night and great to be doing something different.

Thurs I had a lovely long chat with my bestie on the phone.  We haven’t seen each other for over 2 months now and I’m really missing our lunches out and having a good old natter.  Now that lockdown has been relaxed we’re hoping to meet up in a public place sometime in the next week, when the weather has picked up again.

The rest of the time I’ve been trying to stay on top of the washing and cleaning, which has been tough when I’ve felt so exhausted.  I’ve given up on even trying to tackle the paperwork mountain which continues to grow on the hall table and can only pray it doesn’t contain something vital!  I really must get some photos together for a big international competition too, the closing date for which is Friday.  I currently need lightning for a picture I’m working on, so am trying to find ways of faking it – watch this space and pray I don’t electrocute myself or blow the house to smithereens 😉.

 

 

 

Weekly roundup

We’re at the end of the first week of lockdown relaxation.  No-one I’ve spoken to agrees with Boris’ decision and all think it’s too soon.  Our Government are going on the R number, which is the number of people each infected person passes the virus on to. If it is 2 then 10 infected people would pass it onto 20 others. But if is 0.5 then 10 infected people pass it onto 5 others. A week ago, the R number was estimated to be 0.5-0.7, but it’s now crept up and is estimated to be 1.  If it goes above 1 the virus is spreading rapidly and we will have to go back into lockdown.  I personally can’t see how going above 1 can be avoided, but I’d love to be proved wrong.  The worry is that it will go above 1 but the gvt will fudge the figures, eg. blaming care homes for the rise, and do nothing.  It will be interesting to look back at this post in a month.

The reason for my concern is how some people are suddenly behaving.  I’ll take my Dad as a prime example.  He’s 80 and living with my Mum who is being shielded.  She has severe COPD, half a lung, advanced kidney disease and heart disease.  She can barely cope with catching the common cold and if she got Covid-19 she would die, no ifs, ands or buts.  Despite staying home for the 6 weeks of lockdown, the second the relaxation was announced my Dad went to the local supermarket 3 times in five days.  He doesn’t wear a mask or gloves when out and always forgets to wash his hands on return home.  Because lockdown is no longer in force, his brain seems to think the threat has passed.  I have tried and failed to impress upon both him and my Mum the lethal nature of Covid but it seems to fall on deaf ears.  There will be millions like him around the country.

My next door neighbour is also being shielded and she has been brilliant at staying home and social distancing.  Yesterday, however, we were in the driveway having a chat and for some bizarre reason she walked straight up to within a foot of me!  I had to physically say “stay away!” which I’ve never had to do during lockdown.  Everyone appears to be getting complacent, which I personally think will be our undoing particularly as nearly 400 people PER DAY are still dying from the virus.

Just to put this into context, my Aunt has a friend who lives in a nearby village.  She is over 70 and has been in lockdown for the entire 6 weeks.  Yet last weekend she was hospitalized with Covid-19.  She has NO CLUE how she has been infected and can only surmise it’s been from touching something which has come into the house, eg mail or food.  That’s how scary this virus is.

Changing the subject, Wednesday evening my camera club decided to hold a Zoom meeting.  11 of us tuned in and it was chaotic but fun.  We’ve decided to hold a competition online via Zoom and our website, so it will be interesting to see how that goes.  None of us have any clue what’s going to happen about the season re-starting in September as we meet in a tiny room and half of the members are over 60.

Thursday I took advantage of the relaxation in rules on being able to travel for exercise and drove 5 miles to a local bluebell wood.   My annual trip is one of my favourite days of the whole year and being as though this year I didn’t think it was going to happen it was extra special.  For the first 2½ hours I had the entire place to myself – it was just me, the flowers, the butterflies, the bees, the birds and the trees.  Blissful, though it did give me an opportunity to reflect on just how chronically stressed and wound up I was feeling 😕.  See one of the resulting photos here.

However the payback was brutal and I only got 2 hours sleep that night on account of the pain in my back,  hips and legs from walking.  I have no idea what’s set my issues off the past three months, but my pelvis hasn’t been this bad since 2011 and I don’t know what to do about the situation.  You’re usually advised to rest for a few months during a bad flare, but I’ve been in lockdown so haven’t done a thing and it hasn’t helped in the slightest.  I tidied the garden up yesterday and did a few much-needed jobs around the house, and this morning I can literally barely walk 😥.

Well, that’s not been a very upbeat post has it?!  I wish I had something fun and exciting to tell you but the truth is I haven’t.  Even the weather has been freezing cold and windy with overnight frosts, though it’s set to warm up again this week, in which case I’m hoping to dump the dog on my folks for a few hours and poddle myself off to the riverbank with my camera.  The thing I’ve missed the most during lockdown is being amongst nature which is my stress buster.  If I get any exciting shots I’ll be sure to share them with you.

Continue to stay safe! xoxo

 

Stages of Illness

Being chronically ill is a journey and like any voyage we will all react differently to the experience depending on our personalities and circumstances.  I have friends who spend every waking moment online pouring over the latest research and keeping up to date with every ounce of information, and others who barely ever open their laptop.  Those who belong to every charity and support group going, and others who don’t want any part of the sick community.

During the first two years of being ill with M.E. I didn’t know much about the disease and quite frankly wasn’t interested.  I was going to get better soon and leave it all behind me.  I wasn’t so much in denial, as misinformed by a medical profession that told me that most M.E. patients recovered in 2 years and I didn’t see why I should be any different.

Then I became severely affected, was ill-health retired from work, my unused car was towed away and I realized I wasn’t going to miraculously wake one morning cured, so the next 6 years were spent searching for a way to get better.  I spent every waking moment in cyberspace, pouring over research.  Joined every group I could find, debated obscure theories and tried every wacky pill, food and therapy.   Looking back, the arrogance that I would be the one to find a cure when the best doctors and research brains in the world could find no effective treatment for the millions of ME sufferers worldwide, was staggering.   I was in complete denial and my life was basically on hold.

After 8 years of living with M.E., and with many of the ‘treatments’ having made me worse not better, I was mentally, physically and emotionally exhausted and finally realized that the definition of “chronic” illness is that it persists.  If there were a cure or effective treatment we would all know about it, and it was about time I started trying to live with the disease instead of fighting it.  I’d had time to deal with the grief of losing my old life and could finally accept the reality of my new one, while never giving up hope that one day a cure or treatment would be found.

26 years on I hardly ever give M.E. a thought.  I subscribe to the ME charity magazine, not particularly to read it because I’ve heard everything in it a hundred times before, but so that my subs help the charity.  Other than that I’ve mostly left the M.E. world behind.  My illness is fortunately stable, I know how to manage it and if some brilliant effective treatment is found it will be headline news – I won’t have to find it on a Facebook page or some obscure online messaging board.  I am successfully living with my disease.  I have also, if I’m honest, given up hope of a treatment being found in my lifetime and even if it were I’m fairly sure that after nearly 3 decades of the disease ravaging my body it has done irreparable harm.  And I’m OK with that, I truly am.

It’s also now a decade since I was diagnosed with hEDS, and 7 years since I was diagnosed with MCAD.  I reacted to both diseases in the same way as I’d reacted to M.E. – initial denial, followed by 2 years of frantic research and information gathering.  I was lucky in that I found ways of managing both fairly quickly, and didn’t spend quite so  many years as I had with M.E. being angry at my GP and consultants for not being able to ‘fix’ me, and am grateful I’m now fairly stable, though the menopause has buggered my hEDS up royally.  I simply get on with life.  I’m genuinely not interested in the latest research, information, treatments nor anything else.  I’ve been down that rabbit-hole before with M.E. and it’s a massive waste of my time and precious energy.  If my hEDS or MCAD weren’t stable it would be a different kettle of fish, and I’m sure I’d be searching for a better way of managing things, but as they are I’m not really interested.

For me, there came a point in my journey with chronic ill-health where I had to start living with my diseases and not existing in a grieving state of limbo.   My days fly by.  I’m busy with my home, dog, parents, friends and hobbies.  I don’t want to dwell on being sick for another minute of any day.  Life is short and I have to live it to the best of my ability within the confines of the circumstances in which I’ve found myself.  I am totally at peace with my situation.  Even as I write that I know there will be people reading it who will think I’ve somehow given up – I would have felt the same way 20 years ago.

M.E. is a very complex disease.  It’s not going to be cured by something you eat or don’t eat, by some tablet you can buy at the health shop, or by listening to an NLP CD.  Do people who get M.E. now not think we old-timers have tried all that shit already?  The same can be said of MCAD.  Thankfully I’m managing to control some parts of the disease by massively restricting my diet but it’s not cured.  I still wake with hives, I still have horrendous migraines, I am still dermographic, I still risk anaphylaxis with every tablet I take, or every new food I try, but then it’s a chronic disease – for me, one I was born with – so I’m not expecting to be symptom free.  I don’t read all the latest research or belong to any groups – I’m too busy doing other stuff and if someone suddenly discovers a cure or hugely effective treatment for Mast Cell Disease I’m sure I’ll get to hear about it.

What I’ve learned from living with chronic disease for nearly 3 decades is that the best you can hope for is to manage your symptoms well and to be at peace with your situation.  If you can find a way of doing that, which will be unique and different for all of us, you can have a life despite your situation.  It might not be the life you wanted but then very few healthy people ever get to live the life they truly want.   Life is, for the most part, a compromise for all of us.

Realistically, I also know that if I were completely cured of all my diseases tomorrow I would just be presented with a whole new set of challenges.  I’d have to find a full-time job at the age of 52 with no up-to-date skills or experience.  I still wouldn’t have a partner, and my parents would both still be old and sick.  I wouldn’t suddenly have a whole new set of friends to do stuff with, so would still be flying solo.  I would have to grieve and be angry all over again for everything that three decades of ill health had taken from me.  Post-ill-health life wouldn’t be some nirvana where my garden was wonderfully rosy.

We can’t judge each other for being at different stages of our illness experience.  I forget what the early years of being sick were like, and the newly diagnosed can’t hope to understand my life as an old timer.  Our coping strategies will also be vastly different.  Our homes lives and the amount of support we have, or don’t have, varies wildly.  Our economic status has a huge impact on our wellbeing, as do factors like whether we have children or are happily married.  A million and one variables will drive how we cope with our situation.  None are right, or wrong, just different.

 

 

 

Weekly roundup

The spring weather has been glorious here this week.  It’s been the only saving grace of the pandemic.  I can’t imagine our mental health if it had rained the past 2 months and we’d been shut up indoors under grey skies.

Monday I went to help my parents as usual.  I’d only had 2 hours sleep due to my 10th migraine in 12 days, and had been up since 6am ordering stuff for my Mum’s upcoming 80th birthday, trying to make it special even though she’ll still be in lockdown.  I then cleaned their whole apartment, despite the fact my own house is minging, and helped them with various other jobs including doing their weekly Tesco shop.  My Mum, though, was snappy and I really didn’t need it.  As I was driving home, totally exhausted and in pain, I burst into tears at the fact I’d spent the entire day thinking of her and helping out yet she was still narky.

Instead of letting it fester, however, I rang her when I got home and told her it wasn’t acceptable.  She says she doesn’t even know she’s doing it, which I find hard to believe.  She did apologise and say how much she appreciates me, and I know she does, but that still doesn’t make her behaviour any easier to cope with on the days when I’m low myself.

During the 6 weeks of bed bug hell I slept in the lounge and actually enjoyed being downstairs and in a different room during the day, so wondered how I could make this a permanent thing.  However, due to the narrow corridors in my cottage I can only get a small, 2 seater sofa into the room which isn’t large enough to lie down on and I do need to lie down for parts of the day.  I didn’t want a bed in my lounge, though, so having looked at the options I decided to buy a day-bed which is the size of a single bed.   It’s meant losing my dining table, but to be fair I only use it once a year at Christmas, and I’ll get daily use out of the day-bed.  I went for an open, metal framed one so that it doesn’t look too bulky in my tiny room and bought a separate, quality, pocket sprung mattress.  It’s really comfortable and I’m enjoying not being upstairs in my bedroom quite so much.

lyon_cream_1

My migraines have been horrendous the past 2 weeks and my brain fog has been dreadful.  I’ve also been MEish (poleaxed and fluey) and bleeding the entire time – not heavy, just a light period – but obviously my hormones are in their final hurrah and causing me no end of grief.  Bugger off already and do us both a favour.

At 8.25am on Wednesday morning the phone rang.  No-one rings me at that time of the day and when I picked up an automated voice said it was my bank and “someone had been trying to use my credit card”.  It then told me to press 1 as they needed more details.  A scam, obviously, so I put the phone down. But it preyed on my mind – what if it were kosha – so I rang my bank to check.  Forty minutes on hold later I finally got through to the fraud department and bugger me it was real!  A company I’d never heard of had tried to take 27p off my credit card just to test the waters, so I was very impressed my bank had picked up on it and contacted me.  The annoying part is the only place I use my credit card is Amazon – I use Paypal just about everywhere else – but I have no clue which company I’ve used on Amazon is fruadulent.  The upshot is I’ve had to be issued a new card *sigh*.

Thursday I delivered groceries to my vulnerable friends in the next town, staying at my disabled friend’s for a couple of hours to give him some company.  I take a flask of tea and a biscuit and we sit in his garden at opposite ends of a humongous table and shout at each other (he’s a bit deaf, so this is more frustrating than it sounds!).

Friday he rang me in a panic.  He’s an insulin dependent diabetic and usually gets his monthly prescription from the supermarket pharmacy when he does he grocery shopping, however he’s in lockdown and I’m doing his shopping via Tesco online.  Last month, I found a volunteer nurse who offered to collect his prescription for him but this month when he rang her she just didn’t ring him back, so he was stuck and was already a day over-due for his injection.  So I rang my lovely niece, who offered to get it for him and bring it out to my house.  My friend then said he’d pick it up from mine, as it gave him a ride out.

He can barely stand and can only walk about 6 steps, which means he is largely housebound.  He’s been wanting a mobility scooter for several months plus a shed to house it in, but despite lots of discussions on the subject he simply doesn’t get anything organized.  I realized recently that it’s all just too much for him, so as he’s really bored during the lockdown I decided to split it into weekly tasks to make it easier and to give him something to do.

The first week I simply asked him to decide what size shed he needs.  The second week I asked him to decide what colour and material the shed should be made from.  I then found a list of 3 companies who will both deliver and erect the shed, and asked him this week to ring them to get quotes.  That turned out to be too much, so I emailed the most local firm and asked them to ring him which worked well and he’s now just waiting for them to get back to him with a price.

This week we are thinking about mobility scooters.  I have a 3 wheeler, but he insisted he wouldn’t feel safe on one despite the fact he’s never tried it.  So while he was here on Friday collecting his prescription I gave him a go on mine.  He loved it!  I knew he would.  Despite being 76 he’s still very image-conscious, and a total snob if I’m honest, and the thought of going round on an ‘old persons’ scooter wasn’t doing anything for him.  My scooter, OTOH, is based on a Harley Davidson trike and looks much cooler than your average disability scooter.  So this week his challenge is to decide which scooter he wants to buy.  I think he’ll go with one of these, both of which are really quite cool looking!

drive easy rider

Drive royale3 scooter

 

Why am I the one to organize all this though, when he has 2 grown sons and adult grand-children?!  Although none live nearby they could be doing his weekly Tesco shop from wherever they are in the country and having it delivered to his house.  He’s been a good Dad from what I can see and I don’t know how children live with themselves leaving a very disabled, elderly, somewhat confused, widowed parent to basically fend for themself.  Even when they come to visit they do bugger all in the house – all his unpacking when he moved was left to me, despite the fact I have 2 disabled parents of my own to look after and am ILL MYSELF!

We’re expecting an announcement from our Prime Minister this evening, slackening the lockdown restrictions.  We’re still at critical levels here in Britain so it won’t be much, but I do hope he allows car travel and being able to leave the house for longer periods of time.  I’m really missing my photography and being able to sit by the river for a couple of hours capturing the bird life.  You watch, though, we’ll be able to leave the house but it will piddle down all week and be too cold to go anywhere!

Until next week my friends – stay safe x

 

 

 

 

 

 

Weekly roundup

I’m at the end of my 7th week in lockdown, a week longer than the rest of the UK as I started early, and yesterday was the first day I’ve felt a bit bored.  Each day is the same as the one before and the fact it’s now May largely passed me by as I feel frozen in time.

I’m delighted to report the Tesco delivery situation finally seems to be easing.  My nearest store now has 2 extra vans and I’ve been able to secure my usual slot for the next 4 weeks without stopping up until midnight (I have access to a month in advance as I have a pre-paid delivery saver plan).  My Mum now also has her own delivery for the next 2 weeks as a priority customer, which means I’m still able to shop for my two disabled and vulnerable elderly friends in the next town without exceeding the 80 item limit.

My sister-in-law had her 2nd round of chemotherapy on Monday for breast cancer.  The first one went really well so none of us were in any way concerned, which meant we were unprepared for her to have a severe reaction to the drugs.  Apparently, nurses came running from all over the clinic and my s-i-l said she felt like she was going to die 😦  However, they stabilized her and eventually she managed to finish her treatment, though is going to be petrified to face her next lot.

My health hasn’t been good this week.  I am so stiff and sore I can barely hobble, and I’ve had 5 migraines in 8 days (as I type this I have a gel strip on my forehead having woken with yesterday’s migraine still in tow).  Just over a week ago I bought some new pillows, which are really comfortable, but I’m wondering if they aren’t doing my neck any favours.  I suspect the major culprit, however, is my hormones.  Yesterday was day 34 of my cycle and I had cramps and spotting.  I’ve also been so overwhelmingly exhausted this week it’s been difficult just to get dressed and my brain function has been scarily, scarily bad.

michelin man

I continue to munch like the hungry caterpillar from a mixture of boredom, frustration and menopause cravings.  My willpower did a bunk months ago and I’ve given up trying to find it. I’ll eat just about anything, so long as it contains copious amounts of fat and sugar, and now bare an uncanny resemblance to the Michelin Man.  I have enough spare tyres to keep Silverstone going for the next12 months and don’t so much have orange peel on my thighs as an entire crate of Jaffas from the waist down 😉.

Despite everything, to save my sanity I’ve tried to do a bit of photography.  I trawled through my back catalogue and found a couple of pictures I’d forgotten I’d taken, including this portrait of a young girl in my village.  I also did my version of a Lockdown photo which is, admittedly, a bit weird plus a still life of a Tulip out of my garden alongside a Praying Mantis (which I didn’t find in my garden you’ll be pleased to know! 😁).

I see from the BBC this morning that the Government are looking at ways to phase out the lockdown, however it’s largely irrelevant to me.  The virus hasn’t gone anywhere and there isn’t a vaccine or any treatment, so it’s still not safe for either myself or my parents to suddenly start mingling with the rest of society.  I suspect I won’t be leaving self-imposed isolation for several months yet, which doesn’t massively bother me and to be fair isn’t so very unusual from how I normally live.  I would like to be able to drive my car, though, and to go off on photography days somewhere remote just for a change of scenery.

I hope, wherever you are, you’re managing to stay safe and stay sane.  Until next week my friends xoxo