Cyst update

I’ve waited 6 weeks for the ultrasound scan on my ovarian cyst.  It took place in town at 9am, then I had to leg it through to the city to see the Gynaecologist for 11am – just the way the appointments had worked out.  As you all know, I’d been told I had a simple, fluid filled cyst so was expecting that to be confirmed via ultrasound, only it didn’t quite work out that way.

I had both an abdominal and a trans-vaginal scan which confirmed I actually have a complex septated cyst, which hadn’t shown on the MRI.  A septated cyst is one which has divided into more than one part – mine has one side filled with clear fluid, but the other side has a thicker wall and what looks like blood in the middle.  She said it didn’t look like an endometrial cyst, but didn’t go on to say exactly what it did look like.  Complex septated cysts are the most painful to have (tell me something I don’t know!) and also the most likely to be cancerous.

When I saw the Gynae I also discovered my CA125 blood test, used as a tumour indicator, was 112 – normal is below 35.  The test doesn’t necessarily indicate cancer and can be raised for any number of reasons, including peri-menopause (check), endometriosis (suspected check), inflammatory diseases (check), but alongside a complex cyst it’s a cause for concern.

I am definitely having the cyst removed and have been bumped up the waiting list.  In the meantime, there is a centre of excellence for gynae care over in Newcastle so my Consultant will liaise with them as to the best way forward bearing in mind my Ehlers-Danlos and absolute allergy to all things drug-related.  I can have the surgery via epidural as they are cutting me open not doing keyhole, but I’m unsure how they’re going to manage my pain afterwards.  I will then be out of action for at least 6 weeks, which with my poor wound healing history could mean 4 months.  How the fuck I’m going to manage is anyone’s guess.

I was expecting a fairly routine appointment yesterday so all this came as a bit of a shock and I’m still processing it.  I’ll probably do my usual burying-head-in-sand routine until the day of the op.  Worrying doesn’t help the situation one iota.

I’ve only had 90 minutes sleep.  Not due to stressing over yesterday, but due to horrendous period and back pain which I simply couldn’t sleep through.  At about 4am I did think it a tad unfair that, after the day I’d had, my body wasn’t allowing me some kip.  While I’m under the knife I do feel like telling the surgeon to just whip my freakin womb out while he’s at it and at least the monthly torture would be over with.

Speaking of my womb, the sonographer also discovered I have fibroids.  So I now have them in my stomach, my bowel and my uterus.  Every time someone looks inside my body they find something else wrong with it!  No idea if they contribute to my god-awful period pain and they’re apparently not a cause for concern being as though my periods aren’t particularly heavy.

Sooooo, it’s now just a waiting game for a surgery date.  In the meantime I’ll have to get my chef hat on and stock up the freezer with meals.

If I were rich…

I do the lotto online.  Not the UK one cos the jackpot is rubbish but the Euromillions – if you’re gonna win, you might as well win big.

Like most skint people I dream about winning a shed load of cash………and then realize I don’t actually need it.  I’m happy with my little Corsa so I wouldn’t buy a flash car.  I only really use my bedroom, the bathroom and the kitchen so don’t need a big house.  Heat makes me ill, plus I’d be scared of catching some deadly disease, so a holiday to a tropical paradise is out.  I live in my pjs, jeans, polo neck sweaters and fur lined wellies so it’s not like I need a Birkin or a pair of Manolo Blahniks (the fact I had to Google how to spell both of those tells you everything you need to know about my fashion sense ;-) ).  Thinking about it, I’m already pretty rich.

There are things that would make my life infinitely better.  Being able to buy the health care I’ve needed for decades but not had access to would be top of my list and employing a chef not far behind.  I’ve also had a dream lately of buying a huge piece of land with a stream running through the bottom and building a wooden lodge on it, with a view of the Pennine fells.  Just a simple little one-story house but with a big room on the side I could use for my photography.  I’d lie in bed in a morning and watch the sun rise over the mountains through huge plate glass windows, and photograph the Dippers, Heron and Kingfishers on the water in the afternoon (in my dream Bertie doesn’t frighten the birds off the second I’m about to take an award-winning shot ;-) ).

The biggest appeal, however, in being hugely rich would be all the money I could give away.  My first project would be an assisted housing complex for single people with severe M.E.  I got M.E. in my twenties and many of my friends were the same age.  We’re now in our forties, our parents are aging and no longer able to look after us, and for the most part we’re all single and childless – we worry about what the future holds in terms of living arrangements and care.

I’d offer my local council the money to build both a Hospice and a Crematorium.  I’ve been to my neighbour’s funeral today which involved a 60 mile trip to the city.  Our Hospice is also in the city and if you’re travelling every day to visit a dying relative the journey gets old really quickly.

I’d also offer my local hospital money to build a centre of excellence for complex and chronic conditions.  There are zero EDS services here in the North West, zero Mast Cell disease services anywhere other than London and the care for ME patients is dire if you’re severely affected.

I’d build housing complexes in villages for older people.  My 90 year old neighbour whose husband died has lived in our village for 50 years, yet she’s now rambling round in a huge old house which she can’t clean, maintain or repair.  She needs assisted living in a little bungalow or flat – there is nothing like that where we live.

I woke last Thursday morning to an email:  “We have exciting news about your lottery ticket.  Log on as soon as you can to find out more”.  I nearly had a freakin heart attack.  Turns out I’d won the princely sum of £3.20.  It took me a while to work out what I’d do with my vast fortune – I finally settled on some descaler for my kettle, the inside of which is now so shiny it can be seen from space ;-)  I guess my upright MRI scan, surgery for my floaters, custom made orthotics and a 3* Michelin chef will have to wait for another day.

 

Weekly roundup

I blinked and it’s Monday morning again.  Where did last week go?!

The good news is I got my car sold through a dealer in town.  Didn’t get quite as much as I’d hoped for it but at least I no longer have to worry and can pay my folks back some of the money they lent me.

I didn’t go to Camera Club on Wednesday as I was still feeling fragile over my last competition entry.  I chatted to a senior member of the club who has been incredibly supportive of my images and he agreed the judge hadn’t been exactly fair.  There has now been discussions by the Club’s committee on how to make it easier to enter “creative” images and, if they score badly as they usually do, it doesn’t affect your overall score for the year (if I win the next competition I move up from beginners to intermediate league, so yearly scores are important).  He’s come up with a good solution, but it’s still an issue which needs to be raised with the Photographic Federation of Great Britain – creative images should be judged the same as any other image, but they’re not.  I can’t just join another club because all the camera clubs are part of the PFGB and are run the same way.

It’s still raining here in the Lake District.  It’s rained almost continually since the start of November and I’m just over it.  The continual grey skies are so depressing and don’t get me started on the mud……….you’re ankle deep in the stuff wherever you go.  I’ve given up trying to keep myself, Bert or the house clean and Bertie’s afternoon walks are restricted to the roads as I’m scared I’ll get my scooter stuck on anything not covered in tarmac.  Having said all that, the roads are in such a shocking condition it’s like living in a third world country and you simply slalom your way along avoiding the pot holes.  There are even pot holes on the motorway which are ridiculously dangerous and something I’ve never seen before in my 30 years of driving.  Decades of underinvestment + the floods = roads which are simply disintegrating.  The government pay lip service to putting them right, but we all know that country roads simply aren’t a priority and the Suits in London couldn’t give a toss – as soon as all the hullaballoo dies down the promised funds won’t materialize.

Picture by the Telegraph.co.uk

Picture by the Telegraph.co.uk

Picture by the Mirror.co.uk

Picture by the Mirror.co.uk

Picture from Howgill.com

Picture from Howgill.com

My period is due this week and I’m hormonal.  I’m not sleeping very well and I’m irritable and grumpy for no good reason.  My best mate was feeling the same way, so we decided to go berserk and treat ourselves to lunch out at the weekend.  We booked a sofa in an hotel overlooking the lake and fells, stuffed our faces with food (my friend is Coeliac and they do a gorgeous 3 tier gluten-free afternoon tea) and didn’t move our lardy arses all afternoon.  Bliss :-)

Chocolate, I Miss You!

As I mentioned in this post I’m going to try re-introducing various foods over the next year and see how it goes.  I have no issues with wheat or gluten and have been eating organic yeast-free bread since my MCAD diagnosis but while it’s fine toasted it’s disgusting for sandwiches.  I really struggle for lunches, particularly when I’m out of the house which is 4 days of the week, so to be able to eat regular sanis and rolls again would make my life a shit load easier.  Consequently the first food I’m re-introducing is normal bread.  I’m still going to have my yeast-free bread toasted for breakfast, but I’m trialling normal bread for occasional lunches.  It has to be said I’ve always cheated with normal bread when I’ve eaten out and never had any problems.   As histamine is a bucket effect, however, it might be fine to have baker’s yeast now and again and not fine to eat it regularly, so I’ll have to see how it goes for several months and will let you know what happens in the summer.

The other food I’ve never had an issue with is chocolate.  I am peri-menopausal, my hormones are all over the place and there is nothing my body craves more when it’s in hormone hell than chocolate.  Cocoa is on all the Low Histamine Food lists as a DAO blocker but I discovered there is virtually zero research on how any food affects DAO, so heaven knows where the “DAO blocking” food lists have come from.  Cocoa beans are fermented and it’s widely supposed that all fermented foods are high in histamine, but my research showed that’s actually not the case, eg. the fermented drink Kefir in the only test I could find scored very low for histamine, as did yoghurt.  I could find no study which had tested cocoa or cocoa products for their histamine content, so whether it’s high or low is anyone’s guess.  I’m re-introducing chocolate as an occasional treat and will report back.

A stumbling block with chocolate, however, is that nearly all of it contains Soya Lecithin as an emulsifier and research has proven that soy products are high in histamine.  However, chocolate products do exist which contain sunflower lecithin instead of soya lecithin including:

  • Nestle Matchmakers (good job, as I ate 2 entire boxes over Christmas!)
  • Cadbury’s Twirl and Twirl Bites
  • Cadbury’s Flake (the thought of having a 99 ice cream cone with a Flake in this summer actually makes my mouth water ;-) )
  • Waitrose’s own brand continental plain chocolate
  • Moo Free minty-moo and original milk chocolate (dairy free)
  • Willies Cacao El Blanco white chocolate bar (I luuuurve white chocolate, and hate dark chocolate, so this is a real treat!)

The chocolatetradingcompany.com has lots of chocolate products which don’t contain soya lecithin, though they are stupidly expensive.  For my overseas readers, this post from the Ultimate Chocolate Blog contains some American branded soya free chocolate products.

While I’m on the subject of food, I thought I’d let my UK readers know I’ve found another bag of sweets with allowed ingredients.  Tesco’s own brand Spearmint Chews contain glucose syrup, sugar, oil, dried egg white and mint flavouring.  Yes, they contain egg white which has been touted as a histamine liberator – for no reason I could fathom, so I’m no longer avoiding it.

Just so’s you know, I don’t want to hear from the food police on this blog post.  My life is restricted in just about every way humanly possible, so if I can eat the odd piece of chocolate or the odd fried egg buttie without it affecting my health I think I’ve earned it.  We’re all different and I know many of you aren’t as fortunate as me and need a much more restricted diet.

Right, I’m off for a cuppa and a flake :-)

Weekly roundup

I’ve had a stressful week.  In a good way for the most part, but any change from my usual routine or decisions which have to be made causes me stress.  I don’t know why that should be but both my brain and my body find any kind of disequilibrium challenging – it’s one of the symptoms of ME I find difficult to explain to people even after all these years.

Anyhoo, the reason for the stress is that I changed my car.   I live 7 miles from a shop, bank, garage, my parents or anything else and there is no public transport, so a reliable car is vital for my survival.  My current car is 6 years old and, while it’s perfectly fine, it was getting to the point where if I didn’t swap it for a newer one it would cease to have any trade-in value.  So with the help of the bank of Mum and Dad I’ve exchanged my 6 year old vehicle for an 18 month old.

I actually loved my old car so managed to find an identical replacement – it helps that I already know how to drive the damned thing and would be bamboozled trying to drive a different make!  I have to have an automatic as my legs can’t cope with changing gears, it has tinted rear windows for Bertie, parking sensors as I struggle to turn to look behind me and is nice and compact.  The fact it’s the sports model, has double spoke alloys, cruise control and bucket seats has nothing to do with anything ;-)

The stress came in because the garage offered me a poor trade-in price for my old vehicle.  I went to a well known online car buying company (Webuyanycar.com) and they offered me £600 ($850) more which to me is a staggering amount of cash.  So I bought the new car without a trade-in and a few days later travelled 40 miles to the WBAC office expecting them to buy my old one for the stated online quote.  Only of course they didn’t.  They knocked off £400 for wear and tear scratches, despite their website saying the online quote takes into account wear and tear for the age of the vehicle.  Fucking scam artists.  I declined their offer but am now left with not knowing how to get rid of my old car which is stressing me out no end.

To further add to the stress I had another melt down at Camera Club.  I’d done a portrait for my last competition entry which I was immensely proud of.  However the old, male judge didn’t agree and I got the lowest mark of the night.  I know this is a good picture and for it to score lower than a literal knot in a  piece of string, or a butterfly on a flower (which any fool with an iPhone can get a shot of) made me livid.  So much so I left at half time and went home.  We live in an age where we can digitally manipulate images, why the hell would we not do so?  Do you think films like Titanic or the Remnant could be made without CGI?  Hell, even Gone With the Wind back in 1940 used crude CGI for the battle scenes!  Either Photoshop is allowed or it’s not – if it’s allowed it then can’t be marked down.  Apparently my image “disturbed” him.  Yeah, kind’ve the point you old twit.  Van Gogh disturbed people, that’s why his paintings sell for millions of pounds, while his fellow artists painting nice portraits of the gentility have faded into obscurity.  Rant over!

'Losing my Mind'

‘Losing my Mind’

A similar picture to this got 3rd place. What is unique about it? What skill is involved? What story does it tell?!

A similar picture to this got 3rd place. What is unique about it? What skill is involved? What story does it tell?!  Is a pretty picture all it takes to make a winner?

Changing the subject entirely, I’ve had over 30 visitors to my Hands page every single day since it was written in 2014.  The visitors don’t appear to have Ehlers-Danlos, so I’m assuming (hoping) it’s been shared on some kind of teaching website and if that’s the case I’m thrilled.   The more any kind of clinician is aware of the symptoms of EDS the better and the less harm is going to be done when we have certain medical procedures carried out, eg I find going to the Dentist tortuous for my right jaw joint, which goes into spasm seconds into my examination.  In particular knowledge of the condition amongst teachers is beneficial for children.  I so wish we’d known about my EDS when I was still at school because I found writing so tiring and painful and of course these days I’d have the opportunity to use technology such as a computer or MP3 recorder for lecture notes and essays.  As it was I got punished constantly for my “poor handwriting” and given extra lines to do which caused even more pain!  If any of my hand visitors are reading this do let me know where you’re all coming from!!

Freezing

Before my stay-cations in September and at Christmas I spent a few days making and freezing meals so that I could have a holiday from cooking.  It was so wonderful not to have to spend each morning preparing food that I thought “I should do this all the time!”.  I have no idea why it hasn’t crossed my mind before, numpty that I am.

I’m now spending one full morning a week cooking and freezing and the other 6 days a week resting more.  It’s heavenly.  I admit the morning I make the food is fairly tortuous – standing for any length of time makes me feel particularly shite and my back and hands are screaming for mercy by lunchtime to the point where I can barely unzip my jeans for a pee but it’s worth the pain and exhaustion to have the rest of the week off.

Some meals I can then cook from frozen, while others I defrost at room temperature for a couple of hours, or overnight in the fridge, first.  I avoid this as much as I can, as histamine rises during the de-frosting period, but some meals simply don’t do well cooked straight from the freezer.  As well as food, I’m also making smoothies for the week in individual portions and freezing these, defrosting them each day.  It’s probably better in histamine terms to do that, freezing the fresh fruit as soon as I buy it, than having it sit in the kitchen for days on end before using it.

Main meals which freeze well include:

  • Lentil Dal
  • Nutroast in individual slices
  • Burgers
  • Shepherd’s pie
  • The base of a Cobbler (I then make the dumplings on the day)
  • The base of a Lentil Bake (I then make the topping on the day)
  • Chickpea cakes
  • Meatloaf
  • Lentil loaf
  • Macaroni cheese
  • Bean casseroles

though you do have to make the tomato-free sauce which goes in some of these recipes from fresh on the day- you can’t make it in advance, freeze it, defrost it, put in the meal then refreeze.

Lunch recipes which freeze well include:

  • Mushroom pate
  • Lentil spread
  • Pasties
  • Most soups
  • Leek puffs
  • Baked beans
  • Flans

Other things I freeze are:

  • Pesto
  • Jars of red pepper or tomato-free sauce (full jars, half jars and in tablespoons)
  • Oven chips
  • Chopped veg ready for casseroles etc.
  • Bread
  • Biscuits
  • Fudge
  • Carob chips
  • Flapjack
  • Salsa
  • Stock
  • Chilli dipping sauce

When I have time I’ll add the freezing instructions to each of my recipes.

Speaking of recipes, I made some Ginger Snaps this week that were an absolute doddle and only took 15 minutes from start to finish.  They were so delish the first 2 batches didn’t even last long enough for me to take a photo ;-)  They are in no way nutritious but isn’t that the whole point of treats?  Recipe on the Desserts page.

Weekly roundup

My Mum’s reduced-alcohol holiday only lasted 4 days but it was still really nice to see her back, even for a brief time.  I’d forgotten what it’s like to speak to her when she’s not confused, over-the-top happy or maudlin.  To just be normal.  To be the Mum I’ve known all my life.  I miss her.

This week has been quite tough health-wise.  I still have hives and am waking up most nights for a pee, both of which suggest a high histamine load.  I don’t know why my histamine is so rampant – my diet is the same, I’m not under any additional stress and the lingering virus I had finally seems to have gone.   I was quite tearful last night.  I’m so sick of being frightened to eat, of having to put up with the palpitations and nausea and painful stomach cramps every day of my life…….I just wish it would all bugger off and leave me the hell alone.

Having said all that, this morning I read online a letter written by Greg Crowhurst to his wife Linda, who has lived with very severe M.E. for 23 years, and it reminded me how wonderful my life actually is.  There simply are no words to describe the horror of severe M.E. or how truly horrendous my world used to be and being reminded of that makes me ramp up the gratitude for my current state of health.  I don’t know how either Linda, or Greg, find the strength to carry on and my heart bleeds for them.

On a more trivial note, I appear to have lost my sense of humour.  I’ve looked everywhere for it but, like the brand new hat which evaporated into thin air this week, it seems to have gone walkabout.  I can find joy in my world but not humour.  I think humour needs company and being as though there’s just me and a mangy mutt here Wit has moved somewhere more lively.  I miss laughing, it’s good medicine plus people who aren’t funny are seriously boring company and I don’t wanna be boring.  Maybe, like the hat, it’ll turn up in the washing basket, crumpled and a bit smelly but none the worse for its adventure.

Speaking of adventures we had our first real snowfall of the year this week.  Nothing on the scale of the current avalanche in the eastern United States but enough for some serious play time.  Bert, in particular, had about as much fun as it’s possible for a dog to have.  Apparently burying a ball in the snow then digging it up again five thousand times never gets old ;-)