Category Archives: Mast Cell Activation Disorder

The C Word

Which stands for Christmas in case you were wondering 😉  A time of year which often feels like it must be endured, rather than enjoyed, when you’re sick and single.

I’m not going to lie, Christmas is shit when you’re ill, skint and alone.  I love all the twinkle and glitter but when I put my tree up and I’m sat there by the fire watching the lights prettily shine in the dark, oh, how I wish there was someone beside me to share it.   Someone to snuggle up to watching schmaltzy Christmas movies.  Someone to play daft board games with.  Someone to wake up to on Christmas morning who preferably isn’t hairy and licks his own willy 😀 After 23 years of living on my own you’d think it would get easier, but I’m here to tell you it doesn’t.  It’s a bugger.

I thankfully get invitations to go out or to visit friends, but often have to turn them down as I am too unwell or exhausted to even get dressed.  None of my diseases take a fortnight off simply because it’s Christmas.  If anything they often play up more than normal, as I stupidly eat things I shouldn’t and do wayyyy too much.  New Year is positively tortuous, as I hear my laughing neighbours all off out for meals or to friends while I spend yet another night alone in front of the box.  There are times over the festive period that the ache of longing for even a semblance of a normal life is physically painful.

I don’t have a huge amount of money but I’m comfortable and can thankfully pay my bills without worrying.  I don’t necessarily need anything but there’s loads of stuff I’d like, such as camera gear, new boots, more orthotics, some kitchen knives which actually cut food and various other things which would make my life easier and which I never seem to have the money to buy.  Christmas just seems to compound my lack of luxuries.  All those adverts on the telly of shiny new stuff that I can’t afford can get a bit depressing if I let it.

So I have to give myself a good talking to.  I am not homeless or starving and am far from poor, so I try and be thankful for the stuff I have rather than yearning for the stuff I don’t.  I then stay up til midnight for the online Boxing Day sales in the hopes I can still get myself a new studio flash without having to rob a bank 😉 I tell myself that although I am alone at least I’m not spending the day with people I can’t stand, like my partner’s leary Uncle or mind-numbingly dull in-laws.  I am also not arguing with anyone, which was my pattern when I was dating.  My boyfriend would inevitably roll up at my house drunk after going on a bender with his rugby mates on Christmas Eve and spend most of Christmas Day eating paracetomol and looking green to the gills.  I inevitably hated him for spoiling this one special day of the year and felt let down that he could barely touch the dinner the women in the family (it was never the men) had slaved over all morning.

Which brings me to the point that we all think that everyone but us is having some magic, Disney Christmas when the reality is often anything but.  Christmas can be brilliant, fun and fabulous but it can also be exhausting, stressful and disappointing.  It’s no coincidence that January is the busiest time of the year for marriage break-ups due in no small part to the tensions we keep a lid on all year finally erupting.  Children can be demanding and ungrateful.  Women often bare the brunt of the work and can end up resentful and knackered.  And there’s only so much turkey you can eat without wanting to throw up.

So, yes, I am hugely lonely at Christmas, much more so than any other time of the year.  But I am not unhappy.  I shall “treat myself as I would a beloved child” and do whatever takes my fancy.  I shall eat shite, drink fizzy pop and watch box sets of ER, swooning over George Clooney before I knew he was a weirdo commitment phobe.  And it will be fine.

 

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Weekly roundup

This week my blog had its 800,000th visitor, a fact which totally blows my mind.  The power of the internet is both awesome and terrifying and the fact I can reach people half way round the world from my bed is gobsmacking.  On the flip side, two spam followers have joined my blog this week.  One is some corporate strategy dipshit and the other is offering me penis extensions.  I am a girl.  If I had a penis, tiny or otherwise, I’d be worried.  This blog is written by someone who is ill for God’s sake – piss off and bother someone else.

As you may remember, I had my dog groomer’s daughter over for a photo shoot the other week.  It was a favour.  The Mum is setting up a pop up shop in the next village and is doing a little art gallery on the walls, so she wanted me to take some pics of her daughter so that she could paint her.  It took me all morning to prepare the room, set the backdrop and lighting up, carry the props into position, make sure my camera was ready (charge batteries, clean lenses and screens), take shots of myself with a remote control to make sure the lighting and camera exposure were right, then spend an hour doing the actual pictures.  I didn’t charge a penny and did the lady 2 large prints for only as much as it cost me to produce them (minus my time obviously).  The shoot went so unexpectedly well I thought it would be great to have the little girl back to do some shots for my portfolio.  I asked the Mum and she said that was fine as her daughter had really enjoyed doing it.  So I spent £20 I don’t have (bearing in mind Xmas is 3 weeks away) on some little dresses.  At 9pm last Saturday night I texted the Mum and we arranged for her to come at 11am the next morning.  I got up early to walk Bertie so that I could get back and set the room up.  Then I waited.  And waited.  And waited.  By 11.30am they hadn’t arrived, so I rang them.  No answer.  I was feeling shittily unwell and to realize that all that effort had been wasted made me furious.  At 12.15 the phone rang and it was the Mum, saying “sorry, I simply forgot.  I hope you weren’t waiting around for us”.   Is she having a bloody laugh?  Does she think you do a photo shoot on a whim with no preparation whatsoever?  Plus we’d arranged it only 14 hours before and she’d forgotten?!  Pull the other one.  This happens to me all the time.  I do stuff for other people despite the fact it makes me poorly but when it comes to me wanting a favour I just get messed about.

Back in 1988 I did a beauty night-class at my local college.  I bought a set of quality make-up brushes which, 30 years later, are starting to fall apart.  I dunno, they don’t make stuff to last these days 😉  So I thought I’d treat myself for Xmas to a new set of quality brushes, not realizing how flaming expensive they were.  At £20 per brush they’d need to be made of gold and unicorn fur, not plastic!  Anyhoo, I finally came across a website which said it sold designer brushes but imported so they were cheaper.  I should have known better but I ordered some.  That was back in September and I have not received them.  Despite trying to get in touch with the company they have ignored me and when I Google searched them I discovered they were bogus, so I’ve had to do a chargeback via my credit card company and report them to Trading Standards.  Do I need this shit in my life?  No I do not, and I’m still without any make-up brushes.

Tuesday I woke barely able to move my head or left arm.  No idea what I’d been doing in my sleep but I’d done something to my neck.  There’s no need for it.

Thankfully my week perked up after that and I received an unexpected invitation out to lunch on Weds by a friend from my Camera Club.  He’s male and 70 but we get on like a house on fire, so I had a very enjoyable all day breakfast followed by a histamine riddled mince pie.

That night was Club and we were getting the results of our latest competition, which had a set theme of water.  It’s not really my thing and I wasn’t expecting to get anywhere, so imagine my surprise when I was placed both 3rd (for the water balloons) and 1st (for my evening rain) 🙂

The water balloons picture involved putting a paddling pool in my spare bedroom, tying filled water balloons to a pole above the pool, then trying to pop them with a pin while simultaneously taking a photo with a remote shutter release.  Which sounds fine until you realize that when you pop a water balloon you instinctively shut your eyes, so I did it all blind 😀  Then afterwards I had a foot of coloured water in the paddling pool with no clue how I was going to get rid of it.  The rain picture involved me being outside in a flimsy dress, in October and spending an hour under a freezing cold hosepipe. Never again my friends, never again!

Thursday I went into town for my blood test – results due next week.  I then went to do a bit of shopping, calling in at the local deli for my yeast-free bread which is put aside for me every week.  Only when I got to the counter it wasn’t there.  “No worries, I’ll just get 2 off the shelf” I said to the assistant, and only realized as I walked to get the bread that it was Thursday and I don’t collect my bread on Thursdays I collect it on Mondays.  So I just carried on walking, slinking out of the shop with my head down 😉  I then went to get some dog food from Pets At Home.  I remotely opened my car with my key fob on the way back to the car park, but when I tried the handle the door wouldn’t open.  Exasperated I yanked the handle really hard but it wouldn’t budge, so I kicked the car tyre in frustration.  Then I realized the tyres looked different, so I went round to the front to read the number plate.  Er not my car.  No.  My car was parked 5 spaces away.   There are days I’m just not safe to be let loose in society 😉

The reason for my confusion became apparent on Friday when I woke with a stonking migraine.  So I had a super day curled in the foetal position and wishing I could cut my head off with a blunt knife.  Saturday was also a right-off as the nausea, dizziness and head pain lingered.  There may be hope on the horizon for migraine sufferers, however, in the form of a self-infejectable drug which claims to prevent migraine attacks.  See this clip for info.  Whether I’d be brave enough to try it however, knowing how my mast cells respond to drugs, is open to debate.

Today I am going up the lakes with my bestie for lunch and a smooch round the garden centre, filled with all things sparkly and Chrismassy.  I love Christmas and get hugely frustrated at the limitations placed on me by my diseases and the fact I can’t join in with the festivities as much as I’d like to.  Every year I promise myself I won’t do too much and be so ill I spend the whole of January in bed like a rag doll, and every year I can’t help myself.  I like being invited out, spending time with friends and eating things I shouldn’t.  I just accept that I will have to pay for the privilege!

 

Types of Fatigue

Doctors talk about “fatigue” like it’s a single entity and it is listed as a symptom in dozens of diseases and conditions like we all are experiencing the same problem, when we most definitely are not.  It’s a bit like headaches.  You can get tension headaches, concussion headaches, hangover headaches, seizure headaches, migraines and hormone headaches to name but a few, each with different causes and characteristics and needing different treatments.  Yet for some reason fatigue is treated like it’s the same for everyone regardless of cause, when it actually differs widely and needs various management and coping strategies.

Fatigue is a symptom of 4 of my diseases and conditions (menopause isn’t a disease though it sodding well feels like one some days!) so I thought I’d have a go at explaining how it differs for me and how I manage each type.

M.E. Fatigue

The term “fatigue” is so inappropriate when trying to explain this M.E. related symptom that I hestitate to use it, but so far I haven’t been able to think of a better word so it will have to do.  M.E. fatigue is the easiest for me to recognize.  It is totally unlike the normal “tired” or “exhausted” that everyone feels and much more like the fatigue you get when you’re poorly.  My body feels poisoned and ill, a bit like the feeling you get just before you vomit.  That weak, clammy feeling where the blood drains from your face, you are green to the gills, your legs buckle from under you and you end up lying on the bathroom floor groaning, unable to move or think as the weakness and sickness consumes every ounce of your being.  Only it’s like that 24/7.  And it’s not a fatigue that you can push through, at least not for any length of time.  I just hit a brick wall and it is absolutely impossible to carry on.  If I try I either collapse, faint, have a seizure and/or end up puking.  Depending how severe your M.E. is, this brick wall can come about after walking to the shop and back, talking on the phone for 15 minutes, taking a shower or simply sitting upright to eat a meal.  The fatigue doesn’t just affect the muscles, it also affects the brain which feels like it’s permanently stuffed with cotton wool.  Any act of thinking, eg. writing a shopping list, reading a book or making a decision about what to eat for dinner, robs the brain of energy and makes it even more fuzzy to the point where it can be physically painful and thought becomes impossible.

It is not a fatigue which responds to rest.  You can sleep for 20 hours and wake still feeling utterly and absolutely wiped out.  I have felt completely wiped for over two decades and not for a single second of that time have I ever feel well, rested or energized, either mentally or physically.

The fact that M.E. was re-branded Chronic Fatigue Syndrome is an absolute travesty.  M.E. has nothing to do with fatigue, at least not the fatigue that healthy people recognize.  The word “malaise” is much more appropriate, though I still think we need to invent a word which describes the poisoned, weak, collapse which epitomizes M.E..  I even take issue with “post-exertional malaise” which makes it sound like you only get symptoms after activity, which definitely isn’t the case.  I have felt weak, poisoned and ill every second of the last 23 years.  Yes activity makes it worse, but the absence of activity doesn’t mean the absence of symptoms – if only!  When I see people online query if they have M.E. because they are chronically tired I want to scream.  If being fatigued was the only diagnostic criteria for having M.E. half the world’s population would have it.

The only way to manage the fatigue of M.E. is to lie down.  Sitting won’t cut it.  At the severe end of the spectrum you have to lie down every second of the day and at the more mild end of the spectrum you have to lie down for portions of the day, but if you can remain upright for the entire day I’d query whether you have M.E. at all.  Having “rested” you don’t feel recovered, you just feel like you’re not dying or about to pass out, which is a bonus.

Ehlers-Danlos Syndrome

The fatigue associated with my hEDS (and I can only speak for myself) is a totally different kettle of fish.  It’s more akin to normal, if exaggerated, fatigue.  Imagine you’ve just climbed to the top of Ben Nevis and back.  Everything is hurting and aching, your muscles feel strained and overworked, stiffness is setting in and you’re desperate to collapse into a warm bath or onto a soft couch.  That’s what my hEDS feels like, only every second of every day.  There is no ill feeling or feeling of weakness, seizure or collapse, and I can push through the fatigue if I really need to although it does get to a point where the pain is so bad I have to stop whatever I’m doing.

Rest does help and in particular the avoidance of activity.  It doesn’t make the pain, aching and stiffness go but it becomes less severe.

Some people with EDS complain of brain fog but this isn’t part of the diagnostic criteria.  As I already have brain fog from my M.E. I have no idea if I’d have this with EDS or not if I didn’t have M.E. too.  I do think that some people with EDS may also have M.E. and go undiagnosed and that some people have brain fog due to POTS or some other type of dysautonomia rather than EDS per se (POTS & dysautonomia are common secondary symptoms of both M.E. and EDS).

Managing this type of fatigue requires planning and pacing, including switching to different kinds of activities and not doing anything repetitive for long periods of time.  I find it the most simple to treat of all my conditions as it does respond to rest and careful pacing, making the fatigue easier to manage although obviously not cure.

Mast Cell Activation Disorder

Again I can only speak from my own experience but the only time I have fatigue associated with my MCAD is when I’ve had an anaphylactic event.  The fatigue which follows makes me very weak and drained and can sometimes make me sleepy while other times not.  I absolutely have to lie down, often for several hours, and it can be days or even weeks (depending on the severity of the anaphylaxis) before I return to some semblance of normality.

I don’t really get brain fatigue with MCAD.  After an anaphylactic event I feel totally spaced out and my brain feels kind’ve battered and bruised, but not foggy like with M.E.  It’s hard to tell to be honest, because having anaphylaxis completely buggers my M.E. up and causes a flare which can last for months, so then it becomes impossible to tell which symptom has been triggered by which disease.

The only way of managing this fatigue is to rest in bed until it passes.  Antihistamines seem to have zero effect.

Peri-Menopause

I am in year 6 of peri-menopause.  For the first 5 years I didn’t notice any significant fatigue but this year I’ve been poleaxed by it.  It came on out of the blue in the new year and literally overnight I felt like I’d been coshed over the head.  Having researched this online it is fairly common and the name given to this symptom of menopause is “crashing fatigue”.

It’s different again to the fatigue mentioned above and feels much more like I’ve been sedated.  My eyelids feel like cement and are permanently down to my kneecaps, my body feels relaxed and heavy and I just want to sleep, sleep and sleep some more.  However, having slept for 9 hours I wake feeling no better and could cheerfully go back to sleep only 2 hours after getting up.  And then again in the afternoon.  Having slept half the day away, however, I still can’t keep my eyes open past 9pm at night.

This fatigue definitely affects my brain not to mention my memory!  But it’s not so much foggy as sleepy and confused, a bit like I’ve been woken from a deep sleep at 3am.

I haven’t found anything which alleviates my menopause fatigue and can only hope it settles once I’ve gone through The Change and come out the other side.

Having written this blog post I’ve realized how difficult fatigue is to explain and how easily it can be misunderstood by healthy people who have only ever experienced normal tiredness.  I’ve never been asked by medical staff to explain my fatigue, how it feels or how I manage it – they just hear the F word and assume it’s akin to being tired all the time, when it’s anything but.  I’ve thought for a lonnnng time that we need a new word to explain the malaise-like weakness experienced by M.E. patients, so that it can be differentiated from other types of “chronic fatigue” and more importantly from normal fatigue, so if you have any suggestions let me know!

 

Weekly roundup

Oh my giddy aunt I am so tired.  Not ME tired, cos that’s not tired it’s ill, but simply zonked.  I can sleep all night, have my breakfast and want to go back to bed.  I want to nap after lunch and before tea and am asleep by 9pm every night.  My brain feels constantly sedated and my get up and go has got up and gone.  It’s not necessarily a bad feeling, because being sleepy and chilled is really rather pleasant, but nothing much is getting done in the chores department which is a worry with Christmas only 3 weeks away!

My blood test for ferritin and other stuff is due to be carried out on Thursday though Lord alone knows when I’ll get the results.  I went to Holland & Barrett today and bought some different iron supplements so will start those as soon as I’ve had my bloods done.  I flippin well hope they help because this is ridiculous.

Since my Mum’s Guillain Barre her legs have gone weird.  They are like a pair of tree trunks down to about mid calf level and her knees have gone all lumpy.  She went to see her GP about 10 days ago, who was stressed and running late and simply didn’t want to know.  She fobbed Mum off by saying that it’s just because she isn’t walking much and when she’s exercising more it will settle.  But I’m not convinced.  To me it looks like lipoedema/lipedema, which has nothing to do with how much you exercise and everything to do with your lymphatic system (and possibly collagen!).  At the start of this week Mum developed a blistery looking rash on both knees which I think is lymphatic fluid leaking into her skin, so this time I rang the doctors myself and made an appointment to see the practice nurse.  I knew she’d be clueless as to what it was, but also knew that if I suggested it might be lipoedema I might be able to persuade her to refer Mum to the lymphoedema clinic which is exactly what happened.  So we’re now just waiting for an appointment to come through.  If lipoedema isn’t treated early on you can end up with serious issues and legs which look like an elephant.  My reason for mentioning all this is that lipoedema is usually hereditary and associated with joint hypermobility, with 50% of lipoedema patients in one study scoring 5 or more on the Beighton Score – who would’ve guessed!  There are several diseases linked to hypemobility which are largely ignored by researchers in the EDS field and my poor Mum seems to have a few of them.  Dercum’s Disease, Lipoedema and Dupuytrens Contracture immediately spring to mind.

Inbetween my bouts of snoozing on the settee I managed to put my Xmas tree up.  I luuurve my Xmas tree.  It’s an artificial feel real fir which came complete with 250 lights.  All I have to do each year is take it out of the cupboard, stand it in the corner of the lounge, plug it in and it’s good to go (I even leave the baubles on!).   There’s nothing nicer than sitting in front of the fire with the twinkly Xmas tree lights on and snow falling outside.  Actually, that’s not true.  What is nicer would be sitting in front of the fire with the twinkly Xmas tree lights on watching the snow fall outside snuggled up to Hugh Jackman on the couch, but I’ll have to make do with Bertie instead 😉

Yesterday I was invited out to an Hotel in town for lunch by my neighbours as a Christmas treat, being as though they are going up to Scotland over the holidays so won’t be here.  Originally they were going to ask my parents too, but I explained I was taking a break from them at the moment and they were still kind enough to take me out which was lovely.  I had veggie lasagne, which contained aubergine, tomato sauce and cheddar cheese, which won’t have done my hives any good whatsoever but it was sodding gorgeous and I enjoyed every histamine riddled mouth full, even if I haven’t stopped sneezing since!

 

 

 

 

Weekly roundup

I’ve had a lovely, relaxing week though I have had my period and have felt so rubbish I’ve barely been able to drag myself off the settee.  However, realizing I was largely stuck there I decided to made the most of it, stuffing my face with sweets and watching truly awful Christmas movies on some obscure Sky channel snuggled under a heated blanket.  It’s been brilliant, excruciating period pain, migraines, dizziness, nausea and poleaxing exhaustion aside 😉

I thankfully made it to my Camera Club on Wednesday, dropping Bert off at my parents and going in long enough to transfer a talking book onto my Mum’s MP3 player on the promise that she hasn’t touched a drop of alcohol since last Tuesday which I believe (my Dad would tell me otherwise cos he can’t keep a secret for toffee).  It was all fine, though I’m still eaten alive by guilt at not visiting them.  At the same time, I feel so horrendously ill at the moment I know I’m not physically capable of doing anything much for them and just have to tell myself that I am sick too, they are managing and I just need to take some time for me for a change.  However, it’s easy to say that and to know that intellectually but much, much harder to do, as anyone who is a Carer will know.

In between the schmaltzy Xmas films I watched a superb documentary on Channel 5 called ‘Raped: My Story’, which followed 10 people who had suffered this horrendous crime.  I was shocked to the core to discover that someone is raped in the UK every six minutes and although men do get raped, and this was portrayed in the documentary, of course the majority of victims are women.  You do have to wonder if men were being brutally and routinely assaulted every six minutes by everyone from strangers to their own spouses whether the situation would have been more effectively tackled by now.  That rape victims are still routinely blamed for their assault staggered me.  Women should be allowed to walk the streets at night without being raped.  They should be allowed to get drunk without being raped.  And they should be allowed to be alone in a room with a man without being raped.  The current climate where victims of all varieties are blamed for the actions of the perpetrator is sickening.  We should be able to leave our car and house unlocked without a stranger nicking what’s ours, for example.  The tail is absolutely wagging the sodding dog and none more so than in crimes against women.

I did something monumentally stupid on Friday.  We have constant power cuts here in the sticks which usually only last a second or two but which still bugger up all your electrical equipment so you have to go round re-setting everything, and we had one such event on Thursday night which I didn’t think anything about.  Friday night I went to put the oven on to cook my tea and it was dead as a Dodo.  No light, no fan and definitely no heat.  The weird thing, though, was that the top oven and grill were both working perfectly so I couldn’t understand why the main oven was kaput, however the cooker is 13 years old and gets a shed load of hammer and to be fair it wasn’t going to last forever.  So despite a banging migraine I had to start Googling for a new oven, finally getting a really good deal at Argos which included delivery, installation and removal of the old one.  A couple of hours later, though, just as I was about to go to sleep I suddenly remembered the tiny power cut we’d had the day before and something made me get out of bed to check everything looked the same on the cooker.  It didn’t.  Somehow the timer had been switched on and when I turned this off the main oven worked beautifully – there was bugger all wrong with the cooker!  So I then had a mad panic trying to cancel my Argos order before they applied any financial penalties, which I thankfully managed to do.  I felt such a Muppet 😉

The lady who clips Bertie for me wanted me to take a few photos of her daughter, as she has taken up art as a hobby and wants to try painting her daughter in oils which is much easier done from a photo.  I said yes but was dreading it, because I’m not a professional and have no proper studio gear yet clients always expect professional pictures, plus I’m not used to being around children and this child in particular is high as a kite, can be naughty and throw tantrums, and I had no idea how she’d react in a studio (aka my spare bedroom!).  But I needn’t have worried because it all went brilliantly and the little 5 year old should be applying for Britain’s Next Top Model because she gave me all sorts of poses and took direction really well.  My fav photo from the morning is below.

We had our first snow of the winter here in the Lake District yesterday and I can’t believe it’s 1st of December next week.  Eeek!  I love putting my tree up but as far as Christmas goes that’s the only bit which appeals.  Being single at this time of the year pretty much sucks and there is no fun in buying your own Christmas presents cos there are no surprises under the tree.  However, I have decided to treat myself to a half day photographing birds of prey and my friend has agreed to come with me, so at least that’s something to look forward to if I ever have the energy to get dressed!

 

Anaemia update

Last Christmas I realized I was feeling ropey and had been feeling extra rubbish for quite some time.  I was dizzy, constantly.  I could be sitting watching TV and all of a sudden the room would lurch to the left and back again, and there were days when every time I moved my head the world tilted on its axis.  I could sleep for 8 hours straight which is unheard of for me and two hours later need to go back to sleep (I’ve never slept during the day no matter how ill I’ve ever been not least because ME has given me horrific insomnia).  My brain was so fuzzy I literally couldn’t form cohesive thoughts and I had exhaustion so profound some days I couldn’t get off the couch.

Of course, all of these are symptoms of my pre-existing conditions but this felt totally different to my normal rubbish-ness and I knew I wasn’t having an M.E. relapse or a mast cell or EDS flare.  No, something else was going on and I instinctively knew it was related to my iron levels particularly as when I had my period I was absolutely poleaxed.

As outlined in my first post on Anaemia back in February I have several risk factors for iron deficiency and, coupled with my peri-menopause and worsening endometriosis, I knew I needed to get my ferritin levels checked.  They unsurprisingly came back at 17 which according to the lab results was right on the bottom rung of ‘normal’ (17-291), though realistically in order to feel well you should have a ferritin level of at least 50 and preferably above 90.  My vitamin D was also considered sub-clinically low, ie outside the normal range.  My GP dismissed anaemia though because my red blood count was fine and basically just fobbed me off, however she wasn’t the one feeling so crap she couldn’t function so I started on some over-the-counter supplements.

My mast cells seem to hate tablets of all descriptions, so my options are limited to liquids and syrups which are few and far between.  In addition, many of the liquid iron preparations such as Floradix contained all sorts of ingredients I didn’t want or need such as apples (to which I’m mildly truly allergic), spinach, nettles and CoQ10.  So I opted for the ‘Get More Vitamin D mango & passionfruit‘ drink and ‘Spatone‘ natural iron water both of which I could have delivered with my groceries from Tesco.

I have about 200ml of the Vitamin D drink each day, which tastes OK but not brilliant, and gives me 80% of the recommended daily allowance of Vitamin D.  According to my GP, the lab won’t re-test Vitamin D for 12 months so I’ve no idea whether or not my levels have improved after nearly 10 months of supplementation.

Spatone is a sachet of naturally iron rich water which I take mixed in pear juice (the vitamin C aids absorption of the iron and disguises the awful metallic taste).  Iron supplements are, however, notorious for causing nausea, reflux, constipation or diarrhoea and I must admit after 4 days on Spatone I felt sick 24/7 and had awful colic-like stomach pain.  So I had a break for a week, then re-started the sachets but just taking a teaspoon per day and gradually working up to a full sachet.  This worked fine and I had no side-effects whatsoever 🙂

Within a week of starting Spatone my dizziness almost disappeared and I did feel a bit less tired which was great, but unfortunately for me the effects haven’t lasted.  By September I was starting to feel battered by exhaustion again, wanted to sleep for England, was as white as a sheet and feeling constantly dizzy.  In addition I seem to have developed tinnitus, which is a constant low level high pitched ringing hiss in my ears, and I’ve noticed a change in my toe nails (but not my finger nails!).  One of my toe nails has split and despite the nail continuing to grow it just keeps splitting in the same place, while the other nails have started to flatten at the ends.  Spoon shaped nails are a sign of anaemia, but when you Google images you only see horrendous photos at the severe end of the spectrum which bear no resemblance to my mildly flattened nails.  So here’s a couple of pictures of what’s happening for me:


I doubled my dose of Spatone but it didn’t help.  In fact, my symptoms continued to get worse so I rang my GP again, who tried to fob me off by saying that as I already have ME the peri-menopause is going to knock me about, but I tried calmly to explain that I know what ME feels like and this is completely different.  I insisted I wanted my bloods done again, in particular my ferritin and thyroid, although I’m sure my thyroid is fine as I’m not cold and have had no weight loss or gain issues other than that expected of going through The Change.  The first appointment for a blood draw I could get isn’t until 7th December (!), then of course it has to be sent to the lab, analysed and the results sent back to my GP by which time it will be sodding Christmas and everything will grind to a halt until January when it will be so busy getting another appointment with my GP to discuss the results will be impossible.  So I’m now trying to find a different liquid iron supplement to take but am so far struggling.  The thought of feeling this awful for at least the next several weeks, and in particular over Christmas, is pretty depressing.

When you have a chronic disease doctors do tend to put every single symptom you have down to that and it’s often a fight to get them to investigate new symptoms.  But investigate them you must, because it’s been my experience that all the new symptoms I’ve developed over the years have been down to hitherto unknown diseases and were nothing to do with my pre-existing M.E.  In particular, trying to get my chronic pain recognized was a mare because all the doctors I saw simply put it down to part of parcel of M.E. or tried to diagnose me with Fibromyalgia when I knew it was something else, which of course turned out to be Ehlers-Danlos Syndrome.  Then my stomach issues were put down to my EDS, when they turned out to be Mast Cell Disease.  And now my rubbish-ness is being put down to the peri-menopause or my M.E. when it’s going to turn out to be anaemia or at the least iron deficiency.

It’s so hard to fight the medical profession for treatment when you are this exhausted and there are days I feel like putting up and shutting up, but unfortunately that’s not an option when I am so floored I can barely get through the day.  So I shall keep on plugging away until I find out what’s actually going on and come up with a solution.

 

 

 

 

The Conked Out Cook

I know there are people who read my blog who are far too ill to make their own meals, but for those of you who are ill but “well” enough to cook you’ll know how absolutely exhausting, and often painful, it is.  There are days, weeks even months when I can barely stand upright long enough to clean my teeth or make a brew let alone spend an hour cooking a meal.  However, my diet is so restricted due to my histamine intolerance I’m not able to buy much of anything pre-prepared from a supermarket, so if I want to eat I absolutely have to cook.  I have found ways of making that easier, though, which I thought I’d share with you.

1. FREEZING

On the days I feel up to cooking I batch make several meals and freeze them.  I’ll make 8 burgers at a time, wait for them to cool, wrap them in clingfilm, pop them in a tupperware box and freeze them.   I make burrito fillings, the base for a lentil bake, shepherd’s pie, curries, soups, pates, spreads, pies etc. (not all in one day I hasten to add) and freeze them, making enough for 4-8 people so that I have a couple of month’s worth of meals.  I also make several jars of red pepper sauce, chilli sauce, pesto etc. and freeze those too.  I even make a weeks worth of smoothies and freeze them in individual tupperware beakers, defrosting one each day.  All this means that I only have to cook once a week which saves huge amounts of energy.

Of course, not everything is freezable so when I make a lentil bake, for example, I make and freeze the lentil base but make the pasta/cheese topping fresh on the day I’m going to eat it which only takes 15 minutes.  I make and freeze burrito fillings and pesto, then on the day I want to eat them I heat the filling in the microwave, spread my pesto over my tortilla, add the filling, add some mozzarella, and place in the oven for 5 minutes to warm through.

2. PRE-PREPARED FOODS

Pre-diced frozen onions are one of the best inventions known to man and taste no different to fresh onions.  Of course, you can’t use them in a meal which you are going to freeze but they’re great if you are making a fresh dish.  Other than that I’m not a fan of frozen veg, but Marks & Spencer do gorgeous fresh veggie tubs, which just need to be microwaved for 4 minutes (although they are expensive).  They even do fresh mash and hand-cut chips if you’re too knackered to make your own.

Due to my EDS I really struggle to chop up hard veg like carrots, squash and parsnips but many of the supermarkets do fresh pre-prepared and chopped veggies although again they aren’t cheap for the amount you get – they’re fab for a quick stir-fry though.

I’ve found that Supermarket ‘finest’ ranges usually have superior ingredients and are very low in additives and preservatives compared to the regular or cheaper ranges, so it’s worth checking out the finest range to see if there is anything you can buy in the ready meal or ready-sauce aisle.  Making every single thing from scratch is beyond me some days and it’s great to have a back-up ready meal in the freezer I can just shove in the oven or microwave.  The same goes for things like pastry – there’s no way I’d faff on making my own, so compromise with ready made and ready rolled from the supermarket, even if it does contain “mono and di-glycerides of fatty acids” whatever the hell they may be (I try not to think about it!).

3. EQUIPMENT

It goes without saying that if you’re going to be batch cooking and freezing lots of meals you’re going to need a lot of freezer space.  I have a tall fridge freezer in my kitchen, but bought another upright freezer for my shed ( I didn’t want a chest freezer as I struggle to bend and an upright takes up much less room).  Do check, though, if you buy a freezer for a shed or garage that it’s suitable for use outdoors, as not all of them are!  Get yourself some freezer labels from Lakeland Ltd to label all your jars and meals – they’re brill and peel off without leaving any sticky residue (just don’t get them wet!).

I couldn’t live without my food processor, which doubles up as a liquidiser for my smoothies.  It takes all the exertion out of chopping veg and there’s no way on earth I’d be able to make things like pesto or mayonnaise without it.  As I have a small kitchen I like the Kenwood multi-pro as it only takes up a small amount of counter space.

Electric soup makers are fab.  You bung everything in there, press a button and 20 minutes later out comes either smooth or chunky soup.  I learned the hard way to always place some vegetable oil in the base first to stop the ingredients sticking and burning, and that the soup maker will cut out if you overfill so I now place everything in a plastic measuring jug first to make sure I haven’t gone over the limit, but other than that they are so easy to use.  Mine even has a self-clean button and of course you can freeze any left-over soup.

As I either make my own bread, or buy an uncut yeast-free loaf from a local deli, I bought an electric food slicer similar to this one so that I could cut even bread slices.  There’s nothing worse than door-step sandwiches or wafer thin toast and I use my food slicer at least twice a day, every day.

A good stool is a must as there’s no way I could stand for the length of time it takes to make a meal.  I found the perching stool given to me by Social Services was way too big and took up too much room, plus I found the fact it was sloped at the front uncomfortable, so I just use a simple tall bar stool with a back rest.

Timers are a must.  I’ll leave something to cook in the oven or on the hob, go into the lounge for a lie down and totally forget it’s there.  I’ve nearly burned the house down on a dozen occasions!  So I always use a portable digital timer, the type which clips onto your belt but also has a magnet on so can be left on the fridge when not in use.

It goes without saying that my Dishwasher is one of my bestest friends 😉  I was bought a set of pans with detachable handles as a present which means they take up less room in the dishwasher, important when you’re batch cooking and have lots of washing up to do.

My other best friend is my Superkettle/water boiler.  I fill it with water once a day and have permanently boiling water 24/7 at the press of a button.  I freakin’ love my water boiler not least because having to constantly tip my regular kettle killed my wrists, plus I don’t waste energy standing waiting for a kettle to boil 20 times a day.

I have a small set of American measuring cups, which I use for things like pasta and rice.  I’ve found the ½ cup filled level is exactly 3oz of rice which is my usual portion for a risotto and the 1 cup is exactly 3oz of penne pasta which is my usual portion for a pasta bake – little things that just make life easier than having to get your weighing scales out.

Of course, most of this stuff is expensive so I’ve had to gradually build up my equipment range over a number of years.  I’m that rare woman who was actually pleased to get a food processor for Christmas or delighted to get a food slicer for my birthday 😀

4. THOSE SLIPPING STANDARDS AGAIN!

It takes me a whole day and half to cook anything from scratch.  Firstly I prepare the ingredients, then I have a brew and something to eat because that’s used up a fair amount of energy and I’m already feeling it.  Then I do the actual cooking.  Then I have a longer rest and more food.  A few hours later I stack the dishwasher, though I can guarantee if I’ve batch cooked it won’t all fit in, so I tidy the rest of the dirty pots up on the counter where they stay until the next morning because by then my energy has completely conked.  The next day I unstack the dishwasher and re-fill it with the rest of yesterday’s dishes, although sometimes I’m so exhausted they’re still there on day number 3 😉 .

My super-woman, perfectionist, pre-ill self hates the fact my kitchen looks like a bomb has hit it for two whole days each week, but my ill self knows it’s that or nothing and just prays I don’t have any visitors 😉