What Keeps Me Going

I actually wrote this a week ago, but have been too knackered to proof-read & post it. So yeah, pretend you’re reading this a week ago… Or not. Same pills today.

“That’s a lot of pills!” exclaim my friends when I see them in the evening and they see me take my evening painkillers. This is true, but I’m held together by a lot more.

There’s a trend of people with chronic illness posting photis of their pills – although it may look like “sicker than thou” behaviour, it’s actually a response to people who see us functioning and berate others who don’t have the capacity and/or backup to do the same. This isn’t a positive attitude, or other such inspiration porn nonsense getting us through, it’s a shit load of pills, coping strategies, and people who carry us (sometimes literally). So let’s take a look at today as an example…

This morning started at 6am with a cup of coffee, overpowering nausea, and vitamins! Heart rate 56, blood pressure 86/62.

A hand with a variety of vitamin tablets

Due to the joys of Ehlers Danlos, I simply don’t digest or hold onto vitamins so need to take high doses to gain any effect. Other times, my stomach holds onto drugs for a few hours then digests them all of a sudden with the next dose. Because there’s nothing scarier than your stomach having a parasitic grudge against you. This morning contains:

  • Multivitamin with extra iron
  • Cod Liver Oil with glucosamine, both of which are good for joints, reduce inflamation, and tissue repair
  • High dose vitamin E to bolster immunity and improve circulation (useful for keeping POTS in check)
  • Evening Primrose Oil – because of lady things

Couple this lot with a naproxen to dull the aching and I was ready for breakfast. As usual, it’s a cinnamon pastry swirl thing which is basically the only thing I can eat in the morning without wanting to vomit.

Mr Geek gets me washed & dressed, then I can paint my face. Being over-tired at the weekend sparked off my rosacea, so beneath the foundation is a layer of Rozex – this stuff is miricle cream for rosacea in general, but it attacks the evil deep cysts that appear when nothing else does. It’s a mild antibiotic that restricts blood flow around the skin, sort of like acne cream but for inappropriate immune responses.

A hand hoding a used tube of Rozex cream

Cup of coffee #2 comes into work with me & raises my blood pressure higher than the previous undead level. HR 65, BP 102/73.

Work is a welcome distraction and despite feeling a bit overwhelmed right now with marking coming out of my ears, getting into some meaty project work took my mind off wanting to hurl. At the same time, I also kept sipping frim my bottle of diet coke which is another good way to settle stomachs…. And yes, I know diet Coke is the root of all evil, but I’m not being sick, so meh.

Lunchtime rolled around & I looked at my snack pasta & made a face, so opted for the bottle of slimfast in my bag. I’ve tried the medical ones & build up shakes, but I can never stomach them. Slimfast works for me, so I’ve stuck with it. Add in some Naproxen as a pain relief desert because my neck is sore & my back is in icy pain. HR 96, BP 91/65 (eating carbs doesn’t suit me but how else do I get through the day?!)

Final lesson of the day started with a mild headache from trying to (and failing) listen in big conference centre meetings*. As the lesson went on, the lovely flashy lights started and the right side of my face thumped. Metaphorically limping back to my office, I could’ve cried when my lovely colleague signed to me to ask if I was ok. The pain in my head was pulling my hearing levels down further & the brain power needed to lipread was too much. I was really lucky to catch the migraine early and attacked it with a Sumatriptan and Dihydrocodeine as what had been one side of my face was now in my spine (see my migraine post for why all the big drugs). I could literally feel the fog lifting. Bliss.

Unfortunately, post headache I’m tired & foggy and by the time I get home at 5pm I can’t function verbally or focus enough to lipread. The girls & I head up to bed to watch Bob’s Burgers & rest.

After I’ve semi-napped, Mr Geek brings up tea of grilled salmon & vegetable rice. It’s bland enough to et, but tastes nice. For the 4th time this week, we eat dinner in bed as I’m too exhausted to sit at the dinner table.

Evening drugs of:

  • More Dihydrocodeine – opiate painkillers that control my baseline joint pain well
  • Gabapentine – this is technically an anti-epilepsy drug, but it works well on the nerve damage pain.
  • Vitamin D – massive doses of this reduce joint pain, increase energy (ha), improve bone density, and make me a little ray of sunshine
  • A few others to deal with the ahem.. side effects of the opiates

Around 11.30pm my neck pops so hard that it triggers my spine being an arsehole again so Mr Geek measures out a safe dose of liquid morphine to at least help me sleep.

So there you have it. Before you chastise someone for not working through ill health because you see people with chronic illness “coping”, remember what goes into that image you saw. We are excellent actors, but also have a supporting cast of narcotics, and people who feed us, dress us, and take on all the jobs around the house that we can’t do because we’re busy looking like we’ve totally got this.

Even so, I’ve totally got this ok?

…. As a final word, I am a firm believer in science and I am perfectly aware that my headaches are triggered by orthopedic issues. But that doesn’t stop people giving some interesting advice /cures! Here are some of my favourites:

1. Head-TENS – Now I’m all for TENS as part of my toolkit, but I’m not up for electrocuting my heart or my brain.

2. Sex – with a migraine? Ha. Hahaha. Hahahahaha! No.

3. Um.. Pulling the blood from your head! You know, I’m not even sure what’s going on here even with the explanation. The internet needs a child lock.

*please don’t stand in front of windows when presenting. If people are lipreading, it’s nigh on impossible.

Dear Fatty

(Yes, I know I shamelessly stole the title)

New (academic) year, new challenges. But this year marks a big one and a massive personal challenge for me. If you’re reading my blog, then you’re probably already know about the fun & games I have with Ehlers Danlos Syndrome – TLDR; it’s shit & cramping my style, but this month marks the 1 year anniversary of fracturing my spine and just over a year since my hearing dropped to unworkable levels. Life went on. But without my beloved racing that was an outlet for lots of rage – but now I’m back! Wonkier, in more pain, and with an extensive arse (the image below is my “thinspiration” – a combo of being stationary & evil painkillers has wrecked my weight).

So, with new work challenges I knew that I needed to build in some head space and get back to racing, but with our club now super popular it would be difficult to have a chair set up for my weird & wonky limbs. I’d saved up a percentage and reached out to The 53 Foundation for support – then after completely forgetting I’d contacted them I got an email telling me that they’d love to help me fund the rest of my chair & to go ahead and order it!

As an able bodied peron, the financial layout for going for a run is as simple as some trainers & leggings – an entry level wheelchair is £625 (professioal chairs start at £3k), so this grant was quite literally a game changer.

With my chair winging it’s way to me, I knew I had to pay this kindness forward and whilst I’ll be racing to raise money for the 53 Fondation soon (I promise!), there is one woman who I can’t ignore for my first race.

That’s me in the lurid pink alongside team mates who made sport fun for the first time ever.

That's me in the lurid pink!

At the end of October, to prove I have properly taken leave of my senses, I’ll be participating in the Great South Run (oh the delicious irony!) in my chair supported by my amazing friend Rachel & Mr Geek. Instead of sponsoring me for a big charity, I would be eternally grateful if you would consider making a donation towards Shona’s powerchair GoFundMe. It breaks my heart that this amazing young woman who dedicates herself to helping others in the bendy community has to resort to crowdfunding to get an appropriate chair, but lots of us have been there.

Training starts in earnest now and I’ll be posting updates on how we’re doing (even if that is elongated whining about how much everything hurts!). I’m not aiming for a PB – because Ive never pushed that far, so it will be a PB! I have no aims for elite sport – I simpy want to finish in as few pieces as possible (and have the following week already set aside for bed rest).

Wish me luck!

I’m in Bake Off!

Actually, I’m not. But one of the happier things of cohabiting with your parents is my Dad’s flights of household fancy. In recent weeks this has been a K Mix food mixer (note: this isn’t a funded post!). This is the same one as seen in Bake Off, because by owning this our cooking will become as good as theirs…. logic 😉 

Actually, we do cook quite a lot including baking, making bread and pasta, so it’s not that extravagant. And I’m going to keep repeating that.

So the item most prized in the world arrived yesterday in a great fanfare. And today I decided to actually use it. I’m making the most of my final day before school starts and the relative comfort that the knee braces are giving me to potter about the kitchen.

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Not biscuits,  but hot cross buns. Without the cross. Seriously, no one likes the cross.

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Let’s get this baby going!

We used the recipe from Baking Mad which has a nice baking mode to cook along to in clear steps.

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In went all the stuff (yes, that’s a technical term) and off went the kneading attachment for 5 mins. I did another 5 mins by hand as I like stretching out the dough.

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TinyPants was fascinated watching the magic happen… or at least I think that’s what that face means.

After an hour of trying not to look, the yeast had done it’s thing. Time to make buns!

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And into the oven they went!

So, there you have it. The first use of the much coveted mixing machine.

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And the bake is good.

There’s Something About Sunday… It’s the Yorkshire puddings.

There really is something about Sunday that makes it realistically essential to my sanity. This stems from a mixture of time to sort out my life & food.

I got up late this morning after LSH let me lay in until 9.30 (bliss!) as I’d been up half the night coughing like a plague victim. I needed sleep. I needed my body to just get on and heal itself.

So at 9.30 I dragged myself downstairs to drink the final cup of coffee from the machine and commence on the standard Sunday morning homework marathon (them doing it, me marking it!). I find this quite relaxing now as they know Sunday is homework day – there’s no arguments, just get on with it. And now beanpole likes her teacher, she’s throwing herself into her tasks!

LSH took the girls over to his mum & dads at around 11, leaving me at home due to the evil germs that I really don’t want to share around. So, I carried on with various prep & marking bits until 2 then put away some laundry until they got home.

Our afternoon was spent with TinyPants drawing, making dens and playing strange computer games whilst Beanpole and I made a start on her take home task (like homework, but long term) which she’s chosen to do on dinosaurs (huge surprise)… The task is to chose a time and place in history that you would like to travel back to & make a scrapbook about what went on there. She’s throwing herself into this one!

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The best bit about Sundays is that we have time to cook. Traditionally, it’s a roast, and today we’ve got roast chicken with all the bits. Especially Yorkshire puddings.

These are my domain & today’s are sage & onions yorkshires.

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They start off looking a bit weird, but then I sit in front of the oven threatening to maim anyone who dares to open the oven as they start to rise….

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Wow, my oven needs cleaning… Well that’s on the list!

After this stage, it’s basically witchcraft to get them to this stage….

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Cue one big family dinner, bath time all round and ready for another week at school 🙂

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Zey. Like Za Soop!

So this evening my dearest mother announces she has bought Sainsburys best pre packaged chicken breasts ready seasoned with unidentifiable green stuff and fatty bacon.

You may have detected that I’m not keen on packaged bung it in the oven foods. So I did what any sane person would do when presented with the prospect of processed dinner delights……. I made soup.

Cue:

An onion chopped and fried in butter
3 dinky slightly old carrots (it’s nearly shopping day) chopped up and stuffed in with the onion.
Then 500ml of water with 1 chicken and 1 veg stock cube
About 4 chopped parsnips (about because they were frozen… Could’ve been 5)
Some coriander ground and leaf and a bit of medium curry powder.

Boil. Well, simmer for however long the others decide to leave their dinner to shrivel into an overlooked abomination. (Currently standing at 40 mins)

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When it’s finished boiling, then stick it in a blender and smooooooothe it out.

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Nom.

Slow cooking my life

So it turns out that cooking actual food requires preparation, care and someone willing to prevent the food from burning.  I lack all but the first of these, and frankly my preparation is a bit haphazard.

But with a family of four adults and two kids, food must and will be cooked.

This weekend witnessed what shall now be known as the Great Family Grocery Budget Debate. This went aling the lines of me & LSH being totally frustrated that despite the weekly shop having arrived two days earlier, we lacked the full ingredients for modt meals. Mum responded that we had to remain in budget, and I rather tactlessly duggested that she stopped buying a load of pre-packaged crap. (Actually, she took that remarkably well).

The decision was made that we would make a weeks menu and a list if any other groceries that we need for next week and create an online order product by product on our chosen supermarket.  It became a game and Sunday morning was spent playing Supermarket Wars. I can smugly say that I won. By a margin of £20. And swapped in tiny packets of packaged fresh veg for big 1kg bags of frozen. Bulk buying FTW!

We’ve also looked at our eating habits.

Cue Bean chilli.
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This consists of 5 cans of various beans, chopped tomatoes, spices, onions and a couple of fresh peppers. Stuck gun ho into the slow cooker and left to get on with it while we headed out for a few hours of skating. Enjoyed by most with a helping of rice. TinyPants declared it to be poison. I declared her to be eating it if she wanted pudding.

Tonight’s sliw cooker noms is named ‘WTF do I do with 5 sausages and some left over gammon??!’. Again, I’m working on the basis that LSH has been in London all day and not due back til 8. Meanwhile I have 20 mins in between arriving home and heading out to a Brownie thing with the girls.

Solution? Shove random stuff into a slow cooker on high and hope for the best.

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What have we here? Sausages, torn up gammon, tin of chopped tomatoes, bit of added water, carrots, onions, potatoes, paprika, coriander, 2 garlic cloves, a bit of beef gravy.

2.5 hours and it smells quite edible.

So there you have it. Slow cooking – perfect for those on a budget and who have the culinary ability and inclination of…. err…. someone with Dominoes on speed dial 😉

Slooooow Beef Stew

This stuff is stick to your ribs good, and with the first reports of snow appearing over Engkand today, a nice warming dinner was in order.

Stuff you need (makes enough for 6)

3 small onions (30p)
2 carrots
1 small swede (stew  pack £1)
Braising steak (£3.60)
Bottle of beer (£2)
Oxo cube (20p)
Garlic granules (10p)
Paprika
Oregano
3 bay leaves
Corriander leaf (about 10p for a few shakes each)
Gravy granules (5p)

Baking potato – £1.50 for 6

Total per person £1.55

Get stuff cooked:

Chop up the onions and leave them in a small amount of vegetable oil in the slow cooker on high to sweat.

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Chop up the beef into cubes just under a inch. In a frying pan, braise the beef in a mixture of water and the oxo cube until all sides are browned. Now pour about 1/4 of the beer in the pan. Don’t worry that it fizzes and looks a bit weird.

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Pour the dodgy looking beef and its juice in with the onions. Then in the same frying pan put in the carrots which have been roughly chopped to over 1cm thick and add the rest of the beer. This will soak off any beef that has stuck to the pan as well as making your kitchen smell lovely.

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After boiling for a couple of minutes, add this to the beef and onions.

Now chop up the swede and add this along with a generous (ready bloody loads) of the dried garlic and a good shake of coriander, paprika and oregano.  Finally,  put in three bay leaves.

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Once the lid is on, turn your slow cooker down to medium and cook for a good 5-6 hours (or 10-11 hours on low) until it looks like this:

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30 mins before serving, add a shake of gravy granules to thicken the sauce.

Serve with jacket potatoes and green veg.

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Taste tested this evening. Yum 🙂

Woodies American Diner – Don’t Wait Ten Years to Go There!

Dear Americans, I don’t go too much on your politics, but OMG your food!

I had a total moment earlier after spending the whole day at the beach with the kids. That’s it! I’m not cooking! We’re going out for dinner, and I want to try American food!

I ought to explain that ever since LSH and I started dating ten years ago, we’ve driven countless times past a specific American style diner on the seafront and despite trying to go a couple of times (they were fully booked), we’ve never actually eaten there.

Well now we have.

If you live near Brighton, or actually happen to be in the UK (the hours of driving will all be worth it) Woodies Diner is somewhere you should not wait ten years to visit!

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The kids were mildly shocked that I’d suggested going out to get burgers and milkshakes and couldn’t quite believe their luck when they were given free reign with the kids menu (£5.95 for food, a drink and ice cream. Or £1 extra if they want milkshake).

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The staff were really friendly and we were kept entertained by looking at the various signed surf boards on the ceiling and the big TV with Grease playing on a continuous loop! (Ok, this is a very stereotypical 50s diner, but bear with me just wait til you see the food).

We started off with milkshakes (the kids ones are quite small) which were made without a hint of crusha. These were MILKSHAKES. LSH apparently makes weird faces when he drinks banoffee milkshake!

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The kids were delighted with their choices.

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TinyPants even waited until I’d taken the photo before demolishing the lot! (And some chili fries on the side)

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Then ours arrived.

Oh good god! How am I meant to eat that?! It was an 8oz handmade burger topped with onion rings, bbq sauce, bacon, Monterey Jack cheese, and salad. It came with fries and onion rings on the side too!

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LSH had an equally amazing chilli burger which was the same 8oz burger topped with home made chilli. I am pleased (and slightly ashamed) to report that we ate the lot. Well, nearly.

We did also share a bowl of chilli fries between us.

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I was full. Properly need a little nap now full. And BeanPole was staring blankly at the tv while TinyPants looked close to food induced coma. It was clearly time for ice cream!

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It turns put they did indeed have room for ice cream. But then we proclaimed to as well, and shared this. It’s a Fudge Funday (chocolate, fudge & rum raisin ice cream topped with cream, toffee sauce and nuts).

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When we paid the bill, BeanPole announced to the waitress that she had found the place that she wanted to come for her birthday. She’s got good taste! Everything was fresh, well prepared and the place was clean and beautiful.

To top it off, they gave us a car sticker for the car! (Went straight in)

We got back home nearly two hours past the kids bedtime, tired and feeling a teeny bit sick. Suffice to say, the kids went to bed with no fuss at all with very full tummies and Woodies is completely to blame for any lack of special cuddles with LSH later. Far too full for any of that nonsense!

Is middle class a state of mind or a wad of cash?

Ok, you people have brains, so here are the two posts that I am about to refer to. Make up your own minds.

Jilly Luke – http://www.leftfutures.org/2013/08/lentils-and-lager-why-we-forgive-tax-evaders-but-not-benefit-claimants/

A Girl Named Jack – http://agirlcalledjack.com/2013/08/25/dear-jilly-luke-i-tried-to-top-myself-six-months-ago-in-my-beatrix-potter-cosy-poverty/

But here’s my two penneth…

Ms Luke appears to be trying to make an argument (and one that I agree with) that David Cameron and his media circus is attempting to portray the less well off sections of our society as undesirable, unlawful and the reason why our financial institutions have made most of us suffer. Not surprisingly, they are not likely to vote for him. However, the propaganda is extended further to beguile the middling to aspire to the ‘middle class’ which having met some of the ‘true middle class’, is out of reach of many of us. As a teacher, the chances of me earning enough to afford private education and ponies is laughable, however I do consider my family with their higher education, own home, use of cous cous and grasp of grammar (I’m sorry Internet) to be quite middle class. Middle class that teeters on a monthly paycheck.

So in essence, I agree.

But.

She worded her argument poorly. In trying to explain that the propaganda has led many people to judge the ‘poor’ by their outward appearance, she appears to have fallen into her own trap.

Jack is described as living in a Beatrice Potter-esq poverty because of the culinary choices she makes. Because she has made healthy choices, or those which have allowed her to stretch her money further by making use of certain ingredients that the poor couldn’t possibly understand like chickpeas and lentils, she is deemed ‘middle class’ (which is now a slur? I think.) Jack certainly writes with eloquence, which flies in the face of the illiterate picture that people on benefits are meant to be.

It seems the argument is unravelling. Or is it?

I think what Jilly was trying to say is that we love Jack because she’s openly trying. She’s found a way to live through the benefits system without becoming the Cameron stereotype. She’s not the scrounger that the government would like us to judge all claimants to be, but a mum doing her best in the worst of circumstances. There are people who just won’t try, or who don’t know how to, but making them villains won’t work (those in glass houses?)

I think Jilly was trying to say, suck it up Cameron, this woman is proving you wrong and is supported not just by the ‘proud working class’.

At least, I hope that’s what she’s saying.