Dating with a disability

So I'm just going to brush over the fact that I disappeared for a few months. A lot happened in the time and I can't really be bothered to go into it but one thing you do need to know is that I became single in this period (and um...not single again.)

And thus I entered the modern dating world as someone with a disability, with definitely more complications than when I was last single (4 years ago) and now using a wheelchair on a regular basis. 

I downloaded a dating app (no, not tinder) and started writing the blurb about myself (constantly on whatsapp getting my friend to check through everything, thanks Steph!) when I realised I had to make a decision. Do I write about being disabled or not? I didn't want to go on about it, but I thought it would make it so much harder to explain later down the line if I didn't even mention it. So I decided to say that I was a part-time wheelchair user. That was all, no sob story or gory details, just the fact that I use a wheelchair. If that puts someone off then I don't want to meet them anyway. 

Now of course, people asked questions about it. So again I had to make the decision of how much to divulge, the last thing I want from somebody who I'm thinking about dating is for them to feel sorry for me, to pity me. I made the decision to be totally honest about my condition, but without any of the emotion involved. I explained I had to use a wheelchair because I have a condition that causes pain and fatigue, with the (not so) occasional dislocation. I tried not to go on about it, but explain my issues and to be as matter as fact as possible. And you know what? I'm so bloody pleased I did warn people. It meant when I got tired after less than 2 hours in the pub, my date understood that I had to go home.

More importantly it means that my new boyfriend didn't seem too phased when I had to spend our first morning together lying down because my blood pressure was non existent and I couldn't even sit up without feeling like I would be sick or faint (Or when he woke up to me crying in pain in the middle of the night, or even when I asked for a smaller glass of water because I find it difficult to hold a pint glass). I explained what was happening and we spent the morning with me lying down with my legs up (no, not like that!) chatting away. It was a bloody brilliant. Even though I felt like crap half the time, I vomited and I did apologise profusely, I felt pretty secure in the fact that he knew what he was getting in for. And if that's not a baptism of fire I don't know what is! 

I'm a pretty open person (shocking really considering I write a public blog about some of the hardest things in my life!) but I can't imagine trying to hide my disabilities. It is something that affects every part of my life. 

Opening yourself up in the dating world is hard. I'm not a game player, but of course I understand that there are times when we need to hold back a bit. I just don't think something as big as being disabled should be one of those things. 

With hundreds of people now available at the touch of your phone screen, the dating world has definitely changed. It's so easy to think that someone better is just a swipe away. This makes opening up about a disability even harder, what if that's the reason somebody doesn't start talking to me? Well to be honest, to those people I say (and excuse my language but I do think it's most appropriate) Fuck You. It's hard enough learning to accept your own disability, you definitely don't need to have to counsel somebody else about it too. The last thing anybody needs from a relationship is to have their awareness of their limitations heightened by somebody else's inability to empathize.

So the conclusion to this blog post?

I say be loud and proud about your disabilities. They have helped to shape the person you are now, they are an intrinsic part of you for which you do not need to apologize (which I know is much easier said than done). I'm not saying use a hospital photo as your profile picture, but don't hide a part of you that affects your every day. Tell someone if a country walk is out of your reach, or that you can only meet for an hour because you get too tired. Explain that you can get anxious and maybe a busy environment isn't the best for you. Or you know, spend your first morning together unable to stand or even sit up! This is your life, the good ones will be fine with it. 

Frustration and Ehlers Danlos Awareness Month

Frustration. It's annoying isn't it? That feeling of restlessness, of not being satisfied, feeling like there is something missing and more to the point that there is something you should be able to do about it.

If you've ever been unwell for longer than a week I think you'll probably have an inkling of that frustration is like. As someone who is chronically ill I think I can speak for many, if not all, of us and say that frustration is a daily battle.

When you physically cannot put your clothes away, wash the dishes or sometimes even dress yourself, it is very frustrating. Getting to the end of the day and having been unable to achieve more than a shower and heating up some soup is frustrating (and yet you are still so tired that you can sleep all night, but wake the next day feeling like you haven't had a minute of rest). Not having the energy to have a conversation on the phone to sort something out or having brain fog so heavy that you can't even put together an email is really sodding frustrating! Waking up and feeling pretty good, but knowing you have to rest all day because you have dinner plans and if you do something now you will be in too much pain and too tired to go is really goddamn frustrating! Dislocating your shoulder by taking off a top - have you guessed what that is? Frustrating!

We live in a society that on the outside of things seems to value a person by their measured successes. From infancy we celebrate achievement of expected milestones. From taking your first steps into the smiling arms of your parent to losing a tooth for which the tooth fairy will reward you with money. The moment you go to school you are bombarded with badges and awards, merits and gold stars. Constant examinations throughout your academic career will measure exactly how well you are doing compared to your peers. Your parents will boast of your prowess in this or that, perhaps little Dennis is the star of the team or little Anna won first prize in the Maths competition.

Even upon entering the adult world, these value judgements don't stop. One of the first questions people get asked in adult conversation is "What do you do" (example - I was being canvassed by a local politician, who upon finding out I wouldn't be voting for him went ahead and asked with a knowing look "what do you do" immediately thinking he could classify me in that way. It was a shock when I told him I was disabled!)

Unfortunately since leaving school I have consistently been unable to achieve the expected milestones of the society that I grew up in. I was unable to complete my degree at university. Not just once, or even twice, but three times I had to leave due to being too physically and mentally unwell (in case you are interested I was studying Philosophy, Politics and Economics) and at this point we still didn't really have any explanation for what was wrong with me. Although terms like ME, CFS and Fibromyalgia, they came with a whole other load of unknowns and to top it all off, nobody could see that there was anything wrong with me. When I got out the house it wasn't like I had a broken leg (although I now know may well have subluxed/dislocated without realising!), there was never anything tangible to hold onto. 

Before I went to university I was lucky enough to gain a place on the Deloitte Scholars Scheme. For 7 months I worked full time in the big city, and I honestly thought that's exactly where I would end up. The Partner in my office had already offered me a job when I finished university and I thrived off the environment. Its amazing how in a couple of years that changed so much.

I am finally - at nearly 27, 12 years after symptoms started affecting me - starting to get the support I need to help me live a relatively normal and independent life, but I've had to fight for it every step of the way. Even to be diagnosed I had to push for every appointment, convince them of my need for every referral and deal with many, many disbelieving doctors. Between navigating the NHS and DWP, and learning to live with and manage my symptoms it's no wonder I haven't been able to work! I can say that now, but it doesn't stop my frustration at feeling like I'm not achieving. Like I'm not contributing to society or that I'm not doing what is expected of me. I'm not proud of the fact that I am on benefits. I have spent my twenties dreading the unavoidable question at a party "what do you do?" and I've spent far too much time coming up with answers in advance, preparing myself for inevitable feeling of worthlessness that comes with saying you are unemployed.

For me, the biggest part of the last two years (and sorry if I'm repeating myself) has been coming to terms with my disability. The way that has happened has been learning about what is going wrong with my body, trying to get my head around how damaged collagen produces such a good variety of symptoms. It's meant that I've finally been able to understand why I need to rest so much, learnt to give myself a break and make changes that make my life easier. For me, this kind of peace of mind only came with diagnosis

I can't know if being diagnosed at 15 when I started showing symptoms of EDS (or as a baby when my entire gastric system didn't work, or as a 10 year old with Henoch-Schönlein purpura which is an early indicator of a connective tissue disorder) would have made a difference, but I can't help but feel that it would have.

When you hear other stories of people with EDS, my decade long wait for a diagnosis is not unusual, if anything I'm lucky I wasn't born a generation before as you hear of people in their 40s and 50s only just being diagnosed. When you speak to doctors, half of them don't even know what EDS is and ask you spell it out for them. There are only a handful of specialists in the country, half of which are private and it isn't unusual to wait more than a year for appointments and testing.

May is Ehlers Danlos Sybdrome awareness month. The idea is to build (can you guess it?!) awareness of EDS so that in the future people won't have to spend a decade waiting for a diagnosis, get access to support and actually live a full life again. You never know, perhaps one of the people who hears about EDS this month will eventually find the cure. So I have a favour to ask of my readers. This month, I ask you to share something on social media about EDS. You could link any one of my blog posts (even a recipe, it doesn't have to be an EDS related one), or perhaps this buzzfeed article. You could go onto the EDS UK website and download their social media pack, or maybe just tweet that May is EDS awareness month.

I honestly believe that it is awareness and understanding that can help us get on top of rare diseases like this.

I've listed some links below if you want to know more about Ehlers Danlos syndrome and last but not least thank you in advance to anybody that actually feels moved enough to share something about EDS!


Ehlers Danlos Support UK
http://www.ehlers-danlos.org

NHS Information about EDS
http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx

How to get involved with EDS Awareness Month
http://www.ehlers-danlos.org/get-involved/may-awareness-month-2014

Wild Garlic and Lovely Tweeters

Twitter is a bloody marvellous thing. Truly it is. I know that there are trolls and idiots and general arseholes there, but it can also be a bloody lovely community. 

Social media has been a godsend for spoonies. Finally we have a place we can socialize that doesn't involve getting out of bed! And nobody will judge us for being in our pyjamas! 

So anyway, I was on Twitter last week and saw that a fellow Brigtonian (yes, I just said that) was collecting some wild garlic. I told her I was jealous and low and behold, 2 days later I picked up this bag of gorgeousness! 

Actually this was about half of what I was given as I'd already used a load for pesto! 

There's something really exciting about the idea of foraged ingredients, I suppose it's that whole hunter-gatherer thing. Unsurprisingly foraging isn't exactly within my capabilities (!!) but if you are able to go out and explore, Emma over on Retreat Blog has written a great little piece about where to find it and you may be able to catch the last of it. You can read her blog here. 

So with great thanks to @BrightonSuz and @Emzyducks (in case you want to find them on Twitter) I present you with two recipes for wild garlic. Also I've started using my DSLR again, apologies for the crappy phone pictures recently.

Lemon, artichoke and wild garlic rice

I saw this recipe when researching what to do with wild garlic and adapted it for a spoonie. This takes about 3 minutes to put together and is really tasty. The original recipe was in delicious magazine here.

This was a lovely light lunch by itself and I ate about 2/3 of it, however I think it would benefit from a little extra. Next time I might try it with some cheese or maybe even some grilled or roasted chicken. Serves 2 with something else and the larger amount of artichokes.

Also feel free to sub precooked and frozen rice instead of microwave, but we can't all be domestic goddesses all the time! 

1 pack of microwave rice (I used Tilda brown basmati)

1/4-1/2 a small jar of grilled artichokes (160g)

1 lemon

Bunch of wild garlic 

Knob of butter

1/2 tsp salt

Zest the lemon and put aside.

Wash an dry the wild garlic. 

Pop a pan on medium-low heat and melt the butter.

Squeeze the juice of 1/2 the lemon into the rice and cook according to packet instructions.

Once butter is foaming add the wild garlic and cook until just wilted, 2-3 minutes. Turn off the heat, add the artichokes and allow to heat through.

Once rice is cooked mix with wild garlic mixture and add some of the lemon zest. Taste and add salt and lemon juice to adjust.

Beetroot, potato and wild garlic rostis

These are rather delicious with smoked salmon and a fried or poached egg and the colour is just gorgeous! 

These could almost certainly be done without precooking the potato, however you would then need to squeeze oodles of water out and my spoonie hands are not up to the job. The beetroot was hard enough! 

550g potato (1 giant)

190g beetroot (1 med, 1 small)

70g (approx) wild garlic

Salt and pepper

Plain flour for dusting

Scrub potatoes and cut off any nasty bits but there's no need to peel. Cut into large chunks (to fit in food processor).

Pop in a large pan of salted water and bring to the boil, cook for 7 minutes. 

Meanwhile peel and grate the beetroot. Sprinkle about 1/4 teaspoon of salt over and leave. 

Once potatoes are cooked, drain and leave to cool a bit. Once cool enough to handle, grate. Don't worry if it seems very sticky, this starch is what will hold the cakes together. 

Wash and dry the wild garlic leaves before shredding.

Once the beetroot has had at least twenty minutes to sit, use a disposable j-cloth to squeeze out the liquid. Careful as this will stain anything it touches!

Put everything into a bowl and add a heaped 1/4 tsp of salt and a good amount of pepper. Mix everything together until all ingredients are evenly distributed, I find it easiest to do this with my hands, lemon juice can help with the pink stains. 

Flour your hands to prevent sticking and shape into patties. I found a large dessert spoonful to be about the right amount. 

Cover and leave in the fridge for at least an hour. They'll firm up and be easier to cook.

Pan fry on a medium-low heat in using a small amount of fat (I use animal fats mostly for cooking) for 10 - 15 minutes. I tried finishing some off in the oven and they just didn't crisp up as nicely.

I'd love to hear what you do with wild garlic and let me know how you get on if you try any of the recipes. 

So it turns out that I do in fact dislocate

I think I've said in a previous post that I'm lucky enough to not really experience dislocations.

Well...I was wrong! And I think I've been doing it a while.

I always thought a dislocation would be a dramatic event. Screams, loud pops, searing pain. I mean, when you see it happen on tv there's all sorts of drama and excitement, ambulances are called and grown men are reduced to tears. 

My experience has been really rather anticlimactic. 

Take this for example, I had my weekly session of Pilates on Monday as usual. I was feeling rough so my teacher told me to be particularly aware of my body and to feed back to her what was happening. I always start the session rolling a prickly ball under my feet and as I was doing it I noticed my big toe and side of my foot was quite sore, not agonising but noticeably painful. I would usually have just brushed this off as my usual pains but I told my teacher who suggested we have a look. Lo and behold my toe was dislocated. No trauma, no loud noises and significantly less pain than i was expecting. We strapped it up and I got on with the session. Not a big deal really.

Except it is. I mean, toes definitely shouldn't just dislocate (nor any other part of your body for that matter). Over the past few months I've become much more aware of my body and what is happening. I don't think these dislocations are new, I just don't think I had any idea that was what was happening before. 

It might sound weird but there was something kind of comforting about my toe dislocating in front of someone else. I think people tend to think of you as a bit of a drama queen if you say "I think my shoulder just came out" and they didn't actually see it happening. To be honest I have sometimes wondered if I was just imagining it all. Even the closest people in my life have questioned me when I've said that I think something has dislocated, suggesting that it might just be a cramp or something.

I'm not trying to have a go at them at all, but show how with a condition that is so under-understood it is difficult to even know what is happening in your body, let alone how to treat it! I've felt the pain of dislocation before but just not even known to look for it. 

To me it's a really positive step that I can now recognise a subluxation (partial dislocation) or dislocation. I can finally understand what is going on, and with understanding comes the ability to do something about it. Kinesiology tape, supports and even tight clothing are all tools in my kit bag now. I am finally learning how to help myself. Yesterday my body was all over the place but I knew how to support my joints in order to be able to get around without falling over and to minimise the pain. I mean, it still wasn't easy going but not long ago I wouldn't have been able to get about at all. I still have days that I can't get out, but I'm trying to ensure they become less and less.

I'm now really looking at what kind of wheelchair I want to get. Sadly I can't use the NHS manual chair I've been offered as it is just too heavy and clunky for me to manoeuvre either easily or safely. I think I'd like a manual chair. They are lighter (I couldn't actually get an electric one in and out of my car) and would also encourage me to be more active than an electric one would. What i would really really like to get are power assisted wheels for a lightweight manual chair, but sadly you are looking at quite a few thousand pounds there and my budget just doesn't stretch that far. 

It's funny because my symptoms are actually scarier than ever, I mean nobody should see parts of their body just move out of place for no apparent reason, but I'm so much happier than I've been in a very long time. 

Did I tell you I've already booked a holiday for June? I can't frigging wait!!! I'm going away with my lovely friend for a week to a quiet Cretan beach. We plan to sit, sunbathe and eat for a week. I cannot even begin to describe how excited I am! The place we are going to has the most amazing reviews and grows it's own organic food and produces it's own wine and olive oil...it literally sounds like my dream! I'd like to have my new wheels by then I think, that seems like a reasonable time scale.

I guess I should say why i am writing all these positive posts recently.

If I'm totally honest with you I feel like I've spent the last five or six years trapped inside a cocoon and now I've finally been able to break free. I know that mighty sound a bit wanky and dramatic but it's the only way I can adequately describe it. I want anybody out there who suffers from any kind of disability, who is in the throws of depression or other mental distress to know that it can get better. I'm not saying you are doing anything wrong right now if it's not getting better because every day you are fighting a war and you are a superhero. Every day you wake up and have to battle it is a day you have won, because you are still waking up. You are still going. 

I can't tell you the magical solution to getting better. It's a cliche but everybody has to find their own way out of their hole, but there is hope, there can be a way out. You won't be fixed, but you can be better. 

I still get very anxious at times, I still have mood swings and have down days. But in general I now wake up and see an opportunity. I feel pain and know that the severity will pass eventually, even if I have to remind of that myself now and again.

As much as I'm writing this for others, I'm also doing this for myself. I am fairly certain I will have flare ups and feel like I'm losing my mind again in the future. I'm sure I'll have weeks where my anxiety levels rocket again and I struggle to leave the house, but I want something for that future me to come back and hold on to. Something that might give me that little glimmer of hope that I'll have it under control again. Because if I can do it once, I can damn well do it again if I have to.

My Spoonie Suppers

This post is a long time in the making. Pretty much since I first started the blog I've had this post in mind, so it's high time I got down and dirty with it really. 

I would love to be able to create elaborate meals every night of the week, but nobody (let alone us spoonies) has limitless time and energy. We all need an arsenal of meals we can make with no reserves in either the house or your body. Here's where my spoonie suppers come in.

Now of course we could all just eat a pack of crisps or another slice of toast, pop something in the oven or just call for a take away, but that's not actually going to help. When you are out of spoons is the most important time to be getting nutrients and goodness into your body. 

I won't go into the boring details of my new diet but that really is essentially it - I'm trying to ensure that all the food that goes into my body is giving me as much goodness as possible. Processed foods are out, whole grains are in. With this in mind it's been especially important to be organised with the food I have in the house in order to minimise the amount of times I just say sod it and order a take away!* 

A few things that need to be done ahead to help with the below ideas/mini recipes. 

I try to soak all my grains overnight to aid in digestion (there are some exceptions to this). I'll soak and cook a big batch when I'm feeling good, then freeze it in individual portions.

I'm also making homemade stock for the first time in my life. I've always known that chicken soup is Jewish penicillin and stock is essentially the same thing. It's packed full of goodies like readily available amino acids and calcium and it's stupidly easy for your body to digest. To make this cost efficient I go to the butcher and ask for a bag of chicken carcasses. Mine don't charge you but ask for a donation to charity instead so you are saving money and helping others out, double win! Again I freeze this into small portions to use when I need to - ice cube trays are great for this.

I try to eat mostly sourdough bread (the slow fermentation process is supposed to aid digestion of that tricksy gluten) so I keep a stash of this in the freezer, already sliced and packed in twos or threes. I always have avocados and some kind of greens in the house (often spinach but also rocket, chard, kale, spring greens etc etc). Eggs are basically a meal in themselves so they are also a must. Nuts and seeds add flavour and protein, I'm a fiend for pistachios and sesame seeds. I also always have a stock of fresh herbs, they can add so much vibrancy and flavour to a dish with no extra effort. I'm very happy to see the ones in my patio springing back life! I also always have garlic, ginger in the freezer and lemons or limes (these can also be frozen then popped into the microwave to thaw out before squeezing.)

Phew, that was a longer preamble than I originally intended. So without further ado here is some of my arsenal of spoonie suppers.

Toast

Sourdough toast (remember it's already sliced because you are a domestic superstar!) can be a saviour when the idea of doing anything more than pushing the button on the toaster tires you out. Ideally it's a wholemeal or rye flour too, you know, cos whole grain is always better.

What makes a difference is what you put on top and here's where the avocado comes in! Seriously, if you haven't had avocado on toast you are missing out. 

So here's what you do...

- get bread out of freezer and toast

- cut avocado in half. Take one half and slice it in it's skin. 

- get toast

- scoop out your avo slices with a spoon.

- mash slightly onto toast.

- squeeze a bit of lemon on top, sprinkle with salt and voila! Difficult I know.

That's your basic avocado toast, but don't stop there. I urge you to look further in your fridge. Got some smoked salmon or bacon? Maybe an egg just waiting to be poached? A few fresh herbs and some chillis? Some limp greens just asking to be wilted down with a garlic clove speared onto a fork as a mixing device? What about a few cherry tomatoes, a pinch of cracked black pepper and some basil? Seriously the possibilities are endless and delicious. 

Just a couple of examples of my obsession with avocado toast

Pimped up pesto pasta

Everybody loves pesto pasta. It's a store cupboard favourite. I always have some pesto hiding away somewhere, but if you have an extra spoon or two you can even whip up your own in a couple of minutes. Essentially anything green, plus nuts and cheese whizzed up in a mini chopper or food processor will make a pesto. Garlic, salt and olive oil help it along the way. Kale, pistachio and pecorino? Go for it (it's lovely). Brussels sprout, cheddar and walnut? Why not!

I often find that I am unable to lift a heavy pot or kettle of water, which can be problematic when it comes to making pasta as you can imagine. I'm sure you've heard of it already but instead I'm eating a courgetti a lot of the time and also gets me another tick on the vegetable list. It's just courgettes that have been cut to be in spaghetti like strands. They need steaming or sautéing for just a minute or two and really do work as a grain free alternative to pasta. You can use a peeler or julienne slicer, but the crème de la crème of courgetti makers is a spiralizer (can you tell I'm desperate for one?!) 

Not pesto, but so you can see courgetti. This is why I NEED a spiralizer

Anyway, pesto pasta by itself can be a bit dull. So even of you don't have the spoons to make courgetti or your own pesto you can still pimp it up.

I always add a good handful of greens when I'm mixing in my pesto so they lightly wilt down in the heat of the pasta. I sometimes also add some fresh ones to the bowl to add some crunch. Extra nuts always go down well and add protein. Some chopped up ham (Serrano or Parma are my favourites) can add interest and bulk, as does some diced veggies. Got some red peppers, tomatoes or cucumbers, just throw them in! Of course you could fry off the ham to make it crispy and soften up the veg, but that seems like an unnecessary use of spoons.

This was the kale, pisatchio and pecorino pesto

Noodle soup 

Because you a superstar you have got homemade stock in the freezer. This means you just a few bubbling minutes away from a wonder food.

Defrost your stock and get it simmering.

Chop up any veggies you want in there. To go Jewish style add some slices of carrot and half a parsnip to sweeten the stock. Some salt pepper and maybe some dill and parsley stalks if you've got them. Simmer until carrots are cooked, topping up with water as needed before adding your choice of noodle. You can use courgetti (or even carrots) instead of wheat noodles. Take the parsnip out before eating. I usually add a handful of greens at the end of cooking though this is not at all traditional. If you have leftover chicken that obviously goes in, or even a breast/thigh/wing/drumstick - just make sure it's cooked through before shredding.

Chicken soup with kneidlach (mazta balls) and lochschen (noodles)

Or why not go ramen style? Simmer with aromatics like garlic, ginger and chilli. Throw in some soy sauce or tamari, mushrooms, beansprouts, spinach and coriander and you are set. Soba noodles are another great (and actually authentic!) alternative to wheat. Slurp and enjoy! 

Baked sweet potatoes

This takes a little bit of planning as the potato does take a while to cook, but you can be watching Netflix the whole time so it doesn't take any energy.

Wash and scrub the potato clean. Prick it a few times and pop it in the oven (180, of course) until it's cooked! Timing will depend on the size of the potato but an hour is usually a good guess. For an extra crispy skin rub it with some fat that can take high temperatures and sprinkle with sea salt.

A dollop of yoghurt or sour cream on top maybe with some chopped fresh herbs is a pretty good start here but I like mine with tuna and sweet corn as well. Once again though, anything goes. Bacon, cheese, roasted veg, chilli. Whatever you like on a normal baked potato will work here too. 

Eggs

Eggs are a meal in themselves, literally the food of life. When I'm really out of spoons I'll pimp up scrambled eggs with whatever I've got in the fridge. Again you can sneak a good handful of wilted greens in there or some chopped up veggies quickly fried off first. I love adding fresh chopped herbs. An omelette feels more substantial with little more effort but the epitome of eggs is (in my humble opinion at least) poached. On top of avocado on sourdough (and smoked salmon if you are being really indulgent!) with an oozy centre and some freshly cracked black paper is my idea of heaven! 

Rice or grain bowl

Sometimes I find my body is just craving a bowl full of colourful veggies but there's no way I'm spending hours on an Ottolenghi style recipe. This is where my frozen grains come in. I'll defrost/reheat a portion of grains and steam a selection of whatever veg I have in the fridge. 

If I have a dip or sauce of some kind leftover I'll use that otherwise I'll make one up. Yoghurt and some fresh herbs and lemon makes a regular appearance as does a soy and honey teriyaki-esque sauce. Once veg and grains are cooked they all go into a bowl with any salad bits I want. Sprinkled with toasted seeds or nuts and dipped or splashed with sauce, I think it's delicious and I get to feel virtuous at the same time!

So there you have it. A selection of my easy go-to meals.

I'd love to hear what you think of these ideas and what your go-to spoonie suppers are, please post in the comments or get in touch on twitter.

* I can't allow myself to post this without a mention to my other spoonie saviour. When I really do not have the spoons to cook and the boy cannot be persuaded to do so either, we've exhausted our stash of freezer goodies and neither of us is leaving the house, we have a new favourite. Recently Deliveroo has started up in Brighton and it's honestly the best (and worst) thing ever. It delivers food from restaurants in town that wouldn't otherwise do either take away and delivery and means we can get some of our favourite food when I can't even get out of the house! In sure London has had this for ages and it's certainly not the first service to do it in brighton, but the only place that did this before charged around £5 on top of food for delivery. Unfortunately I just can't justify that expense. On the other than deliveroo's charge of £2.50 is so much more reasonable. It's a little bit embarrassing how much we have ordered through them but I did recently win a £50 voucher and spent it all on sushi and it was amazing! 

A selection of the food we've had from Deliveroo recently. I love that it always comes packaged so much more nicely than a standard takeaway!

Please excuse spelling and crappy photos, it was all put together on my phone!

Learning to take control

I'm currently sat in my patio in the sunshine*, getting very excited about the arrival of spring. I really don't think there is any better therapy than a good dose of vitamin D, everything seems easier to cope with when the sun is shining. 

I find winter very difficult. Historically it has been the period of time where I have (for want of a better phrase) lost it. Christmas has for years been synonymous with a flare up and the feeling of losing my mind, so it's been pretty fucking amazing that this (last) year that didn't happen. In fact I've been on a very even keel the whole of winter. 

For years people have told me that I need to take control of my life, and not allow my illness to do so. I've found this a very difficult pill to swallow. I could not understand how I was supposed to have any semblance of control of a body that had a mind of its own. I didn't know how I would feel from one day to the next. I couldn't make plans because I'd have to cancel two out of three and nobody knew what was wrong with me. I saw countless therapists and doctors (including the wonderful osteopath who originally noticed my quite extreme hyper mobility). We thought I would get better, I was just waiting to be able to start my life again. That was, until my diagnosis.

I think I am finally understanding what it is to take control of my life, warts and all. I don't think I could do this before my diagnosis. When I thought that I could get better and never have to worry about things again, my focus was on the end goal. I had the idea that if I could just work hard enough, all would be sorted and I could go back to being me, pick up where I left off.

Diagnosis has thwarted that hope that I will magically get better. At first I felt like I'd be handed a life sentence. I'd known for a while that I was probably never going to fully recover, but it's quite a different thing having that confirmed by a specialist, partcilarly when you find out that your condition is a whole lot scarier than you ever realised it could be. Over the next year or so I can now look back and appreciate that I was going through the stages of grief. I cried many (many!) tears for the life I would never lead (it still chokes me up thinking about it) and I found it very difficult to accept that my life was going to be extra tough because of something so outside if my control. 

But diagnosis also came with some benefits. I could finally educate myself and start to understand what was happening in my body.  I was able to get more help. I got a blue badge and a new car through the motability scheme. I now see an occupational therpist and have a wheelchair. Each little step helped me to feel closer and closer to being in control.

The final stage of mourning is acceptance and I think I've finally reached it. What I never realised before was that until I could truly accept my fate/condition, I would never be able to take control of things.

So what does control look like to me? It looks like my cleaner and my pilates instructor who come to me once a week. It's reaching out when I feel panicked and opening up to people in my life about what's going on. It's having a flare up (as I had in February) and not losing my shit. It's changing my diet (that's a whole other post) and it's buying myself decent clothes. It's even doing my tax return on time!

I appreciate that none of these things are very big, but to me, they are everything. 

It's funny because I'm not really any "better", in fact this most recent flare up was particularly terrifying. I couldn't leave the house for a week, my hip subluxed and I couldn't put weight on it at all and my kneecap dislocated (it's a very strange thing to see your kneecap in completely the wrong place, and even stranger to be able to manipulate it back). I was going to write a post all about the flare up but I realised that I didn't need to. What it's taught me is that I'm learning to cope with these things, it actually showed me just how far I'd come. I guess what I've learnt is that I don't need to have control of my body to have control of my life. I'm never going to know whether tomorrow I will have a dislocated kneecap, but what I can know is that my home is clean, my fridge is full and I'm doing everything I can to make my life better

If 2014 was the year I learnt acceptance, I think 2015 is the year I will learn to take control, one task at a time.

* for full disclosure I was sat in the sunshine when I first started writing this, but that was a couple of days ago now and it's late at night when I am finally publishing this post! 

Proper Hot Chocolate

I'm not really one for hot drinks. I can't stand tea or coffee and I'm not a fan of the herbal kinds either. One thing I have always loved though, is hot chocolate. I remember getting it from the machine in school purely to sip the precious foam off the top of the otherwise watery and quite rank brown liquid below. As I grew older I'm thankful to say my tastes refined somewhat! I moved on from drinking chocolate to cocoa, perfecting my frothing technique on the many many instruments we bought for the job! I still think the best one was actually pretty much like a cafetierre. It would make the thickest and creamiest foam, but was a bloody mission to pump! 

However there was nothing quite like trying my first proper hot chocolate. I was travelling around the world on my gap year (yes I can hear the groans!) and was in Queenstown, New Zealand. There was this cafe that served up mugs of what seemed like pure molten chocolate. It was divine! Thick and creamy, rich and full of chocolate flavour with hints of cinnamon and not at all sickly or sweet. 

I have been on a mission to recreate this experience ever since and I think I have just done it! It's been ages since I posted a recipe on the blog so I this seemed like a perfect mini recipe to get me going again.

I added mini marshmallows to mine but otherwise it's all natural and no added refined sugar . There are loads of studies that suggest dark chocolate containing at least 70% cocoa solids actually has many beneficial properties. It contains flavinols that are shown to have antioxidant and anti inflammatory properties and studies suggest it has a beneficial effect on cholesterol. So you could basically say this is a health drink! *

I find the easiest way to get good froth is to use a hand blender at the very end. Works really well and the forth is thick enough to hold up to being poured into a mug.

A note about ingredients. With so few ingredients it is worth using the best quality you can. I try to use organic milk all the time, the amount of hormones and antibiotics pumped into cows is horrifying and it comes to us straight through their milk. To get any beneficial properties of chocolate you need to go for a high quality one with at least 70% cocoa solids (good chocolate will say this on the packet). I use cinammon sticks but ground is fine, add it at the end to your taste starting with a pinch. You could use honey instead of maple syrup to sweeten, but it will alter the taste. Start with a small amount (1/2 a teaspoon) and taste before adding any more.

Ingredients 

Just under a mug full of milk (I used semi skimmed but for a fully luxurious drink use whole and/or a dash of cream)

50 g dark chocolate 

Small cinammon stick

1-2 teaspoon maple syrup (optional depending on how sweet a tooth you have)

A pinch of sea salt

Chop your chocolate up into little pieces or grate it.

Add about 1/4 of the milk to a small pan. If it doesn't cover the bottom then add a splash more (although your pan may be a bit big!) Add the cinnamon stick and heat gently until it is steaming, then take it off the flame. 

Add the chopped chocolate and stir until it has melted. 

Slowly pour in the rest of the milk stirring as you go and put the pan back on the heat. Heat until steaming but not boiling, turn off the flame. 

Add a pinch of sea salt (you can't taste it but it really lifts the chocolate flavour) and taste. If you wish, add a a teaspoon or two of maple syrup, but the drink shouldn't be too sweet. 

Remove the cinnamon stick and froth using a hand blender. Pour into your mug and if you are being naughty (like me!) top with a few mini marshmallows. 

Voila! Luxurious hot chocolate! 

*Disclaimer: I don't profess to this being any kind of health drink!

Anxiety

You take away my confidence in myself. You make me believe I can't so fervently that I actually can't. You are a physical being, a monster inside of my head and my chest and my legs. You stop me from breathing and you make my eyes continually leak. You jumble up my mind so that my thoughts come out backwards and upside down and incoherent and you turn me into a blubbery mess. You stop me from going outside. You stop me from opening the front or answering the telephone. You make me want to cut myself and you tell me that I'm useless. You tell me I am weak.

But I am not. 

I am strong.

I am strong because I have fought you for so many years. I am strong because with you on my back my load to bear is so much more than it ever was before and I am still here. I am still going. I am strong because you have made me open up to my friends and my family and the world and I know I don't have to fight this alone. And I CAN fight you.

With every inch of my being I will fight you.

You will not beat me.

The Start of a New Year

I think when I look back at the past year I’ll say it’s the year I really learnt to accept my disability. Finally understanding what is going on has made a massive difference, and I feel like I finally am being taken seriously by the medical community. Although this year has been full of medical annoyances, I think I’ve learnt that I’ll pretty much hate any hospital appointment. Last week I went to see a dermatologist about something completely unrelated to EDS or POTS, and as with all of my appointments about the chronic stuff, it was one of the most impersonal and unfriendly experiences. She didn’t smile, introduce herself or generally have any bedside manner whatsoever. Mr Spoonie Foodie was absolutely dumbfounded by it, but I‘ve learnt such is the way with most specialist consultants and get less angry every time I experience it. I’ve started to accept my limitations, now that’s not to say I’m not going to fight them and try and get better, but it seems I am finally learning to live within my capabilities. Deciding to use the wheelchair will probably go down as one of the biggest things I did to help myself, I thought it would feel like defeat but instead it has been totally and utterly freeing.

2014 will also go down as the first year I decided to not go out for New Years, not through illness, but because I knew it would be the wrong thing for my body. We had plans to go to a night at a local pub with friends, but the more I thought about it the less I wanted to go. I woke up on new years eve and decided I didn’t want to start another year with a week in bed feeling dreadful and emotionally raw. Instead I made an absolute feast for one of our best friends and his girlfriend, and wished them farewell when they went off. I had a glass of prosecco and went to bed. It was fantastic! (It wasn’t so fantastic when I was woken up by a very drunk Mr SF at 5.30 am, but we’ll just brush past that). I’m certainly not saying I’ll never go on a big night out again, but I’ve been feeling so good recently I didn’t want to ruin it on what is just another night out.

So, what do I hope 2015 holds for me? To be honest I don’t know, and I’m ok with that. I’m definitely not one for making resolutions, but I do have some aims. I’m starting the year with the strongest frame of mind I’ve had in a long time. I’m eager to do more, and would love to start regular work again, but I’m also aware of not doing too much and pushing myself backwards again. I want to do some studying, as I mentioned before I’m really interested in nutritional science and there’s loads of other stuff out there to keep my mind occupied. I’ve also decided to give myself a Christmukkah present this year of private Pilates classes. I’ve contacted a recommended instructor and am waiting to hear back and I'd like to post more regularly on the blog, particularly more recipes. But most of all for 2015 I just want to stay feeling ok. I’ve had one of the nicest Christmases that I can remember. It’s been a constant stream of family and friends, which although has made me anxious at times, has just reminded me just how good I have it. I recently got to meet my new nephew, and there’s a strangely nice feeling about the fact that the next generation of the family has been born. Yes, things in my life could be better but I’m feeling pretty content at the moment. I have friends, a beautiful home, a loving partner and a fabulous family, plus I cook really good food! 

Why?

I recently realised that I have never really explained the ‘why’ behind the blog. Yes, I've told you I love cooking and what my conditions that make me a spoonie are, but I've never explained why I think they belong in a blog together. I think I’m going to try and do that now!

Food and health are inextricably linked. For starters food is how we get energy, not only to have the energy to go out to the shops but also it gives our bodies the building blocks to function right down to a cellular level. I’m not even close to being an expert on nutritional science but it is something I am fascinated in learning more about. So we need to eat in order to survive and not only that but we need to eat the right things in order to function properly.

But that is not the why behind this blog, there are plenty of places out there that offer this kind of information, in fact what got me more interested was hearing about Nutritiously Natasha, so if you are interested in a food as medicine/nutritional science side of things it is definitely worth giving her blog a read.

For me, there’s a different connection. The food I am eating and cooking is very indicative of my current health. On a physical level, when I am in too much pain to really move, carrying pots and pans, chopping and just the act of thinking up a meal to cook can be quite simply beyond my capabilities. Even on a relatively good day I have to be aware of things like the weight of pans and I wear wrist supports to help stabilise my wrist and thumb. Then of course there is the complexity of a meal, when I am so tired I can’t think straight I’m not going to be making a feast. You are more likely to find me eating a sandwich or pasta and pesto (if I can carry the kettle). On a mental level, depression has a huge effect on your appetite. When I've been unable to get out the house for a while and I've been barely able to cook for myself it starts getting me pretty down, so even the desire to eat can just disappear.

It’s not all doom and gloom though! Cooking isn't just affected by my mental state, it also affects my mental state. When I’m feeling down and I don’t feel like doing anything, actually cooking something and enjoying it has a hugely positive impact on my state of mind. Cooking good food doesn't just feed the body, it feeds your soul. I don’t mean any kind of religious or even philosophical concept here, just that internal warmth that a really good meal can give you. And then you've achieved something! It’s amazing how when I’m feeling down and have no motivation, just starting something is the hardest part. Because once you've started, and then done, it gives you motivation to do more, and suddenly you haven’t just been a total waste a space but a goddamn superhero! And when that doing also includes creating a delicious and nourishing meal for yourself (and maybe others) what can be better?

As my last couple of posts have explained, I’ve been going through a bad patch recently. It’s funny though, after a couple of weeks in bed recovering from my last hospital appointment I seem to have suddenly woken up and started to feel OK. And every day since I have pretty much been OK. It’s not like I’m not experiencing any pain or fatigue or anything, but it’s manageable. My anxiety levels have been minimal and again, manageable and I’m not sure why but I really do feel like I’m doing and handling things OK.  And do you know what else? I’ve been eating fantastic food!

My amazing lunch at Silo Brighton. If you live down here you MUST go! 

Clockwise from top left: Indulgent (hungover) fry up at seven bees cafe, kemptown. Gluten free chocolate cake made by yours truly, a go to easy dinner, prawns with chilli, garlic, slow roasted tomatoes and lots of wilted leaves and lunch at Artisan Cafe (one of my new favourite places)

I just need to find my mojo

So...it’s been a while (she says emerging out of her pit).

I've actually sat down to write quite a few times. I've got about 4 half written posts sitting on my computer, but none of them felt quite right.

I have been feeling a bit guilty about leaving the last post a massive rant, but then I also have to learn not to berate myself over things like that. I needed to write that post, it did me good, so the last thing I should do is tell myself off about it (easier to say than do!)

You might have guessed from my absence, but I've not been doing so well recently.It’s funny isn't it, ones head. It seems to take very little to completely knock me off course.

So, what’s happened? Well, as you know (because I didn't shut up about it beforehand) I went on holiday over the summer and it was wonderful! Taking the wheelchair was by far the best decision we could have made. I got to do so much! But unfortunately we had an incident 4 days before the end and I think that is where this funk originated from (though not wholly, but it must have been the trigger). Long story short my luggage got lost for a day. We’d just spent about 3 hours on a bus and I was feeling pretty rotten anyway and we needed to go and spend about 2 hours on a ferry after that, so I didn't exactly have any reserve spoons in my arsenal. Luckily the luggage did get returned to me but it meant a 4 hour delay in a busy and hot city of Split. I know to most people this wouldn't really be a problem. Go shopping, go for a wander etc, but this totally knocked me for six. I had no energy for shopping and my mind was consumed with the panic of losing something and the horror of having to drag myself around a shopping center to replace everything. It kind of spoilt the rest of the holiday to be honest. I was anxious and didn't sleep properly and I was in too much pain to really appreciate things.

I thought that would be that, get home from holiday and push on. But ever since I've been back I've been in a slump.

I let it go for a while, I wasn't massively down or depressed. I was still taking enjoyment out of life and friends, I wasn't crying all the time. I thought I was coping.

Then I went to see my therapist.

I should have known it was coming. All the signs were there. I wasn't crying all the time but I was totally and utterly flat. I wasn't really cooking, or writing, or baking. I wasn't bothered about seeing my friends, or ‘doing’. I just was.  There were definitely other contributing factors to this slump. My car finally died, so I am definitely feeling a bit stranded in general, and I had that awful assessment for the rehab clinic. I also had my assessment for PIP in September, which was definitely making me nervous and I just attributed my flat mood to all of these things along with the change of season.

But then I heard from the rehab clinic. I couldn't quite believe it but they are actually giving me a shot! In fact, I think they are doing the most sensible thing possible and I am going in for only one week as an assessment/test. We will see how I cope with the timetable and hospital setting etc, before possibly going on to do a full three week course in the future. I really couldn't have asked for more. They are also putting me in the (only) two bed ward, so hopefully that will be easier than having to sleep with 7 other people in the room. I couldn't have really asked for more. The assessment was a horrible experience, but at least they haven’t just totally written me off/rejected me.

And then a few weeks later I heard the decision on PIP. It was (and I still can’t quite believe it) good news! I actually had a really positive experience in my Atos assessment (SHOCK SHOCK HORROR HORROR) and I've been awarded PIP with no appeal, which I thought that was almost unheard of for an invisible and variable condition. Now I've got it I can get a new car, and I've hired a cleaner and even bought a hoover!

But even though the things that I thought were contributing to the feeling were getting sorted, I was still feeling flat.

So, back to my therapist’s office. Have you guessed that I had a total meltdown?

I love my therapist, he asked me what my instinct was and my answer was to run away. Oh god how I wish I could just hop on a plane and fly somewhere hot and go and run away from everything. And his advice? Do it! But on a smaller scale to my grand ideas of leaving everything behind, and so two weeks ago I ran away for 3 days to a health retreat in Surrey. I had three days of absolute peace, I didn't have to think about anything. All meals were provided, I swam, I steamed and saunaed (totally a word) and had various treatments. I definitely got head space. And now I’m back.

If i’m honest, it didn't really do what I wanted it to. It was amazing and my skin is better for the facial and my body is better from the massage and exercise I got, but my head still doesn't feel screwed on right.

I've been massively anxious recently, having panic attacks much more often than normal and over very little. But I have got more things sorted. I have got a new car through the Motability scheme which will arrive in December, and I've been trying to keep on top of things like paperwork. I've got a cleaner to help with the house, and I even went out last weekend without Mr SF and with my wheelchair, and my friends were (of course) just amazing about it.

That’s about it really. I do feel better than when I had a meltdown in the therapist’s office, but I’m definitely still not right. So please, bear with me whilst I struggle a bit, I just need to find my mojo.

A rant, because apparently I'm not well enough to get well

So it’s been a while...and what a while it has been! I definitely meant for my first post back to be really positive, all about holiday and achievements and surprising myself. Unfortunately, I don’t think that’s what I need right now. I’ll post about all the positives at some point, but this might end up being a bit of a rant (sorry!) 

So...on the Friday after getting back from Croatia I had my assessment for the rehab clinic. I was nervous as I definitely had reservations about it, but I was also excited. This could be it! The thing that helps me get my life back on track. I’d been doing so much better recently that I felt like I was really in a place where I could get on board with it. I’ve been getting into more of a routine with my wake/sleep cycle and been managing my energy better with afternoon naps, meaning I can actually have 2 bursts of ‘doing’ during one day (we’ll ignore the doubling of the waking up grump!) I’ve been on holiday and actually dealt with my anxieties about it (and we really did have an amazing time). But it all started going to shit when I got there. Somehow I’d got the timing wrong for the appointment and turned up at 3 instead of 1, cue an anxiety overload. However, they were able to fit me in and I met one of the occupational therapists that works on the programme.

Did I mention they sent me a questionnaire to fill in before I went?  (I’m sure you can imagine how much I LOVE patronising and overly simplistic questionnaires). The questionnaire asked you to do various things like colour in this image of a body where you feel pain. Well, my picture was totally coloured in. I literally feel pain from my head to my toes. I get facial pain, neck pain, shoulder pain, arm pain, wrist pain, finger pain. I feel pain in my back and my hips and my legs and my knees and my ankles and my fucking toes. I get pins and needles in my extremities and it can take seconds for a part of my body to go numb. It also asked various things like your walking tolerance (a couple of minutes at most, at worst I can’t get out of my flat) and whether or not you fall (I tend to stumble a lot, but am usually able to catch myself before actually falling over.) They ask you how they can make the rehab clinic better for you to which I responded ‘not scheduling heavy/physical activities in the for the morning’, which I thought was quite a reasonable response.

So I sit down the OT and guess what she has in her hands? My questionnaire! She proceeded to go through it question by question. She asked me where my worst pain was, I looked at her in disbelief. Um....well...everywhere, as I explained on the diagram. She then looked at my answers regarding walking tolerance and posed a rather aggressive question “Well, if you can only walk for a couple of minutes at a time and need to rest every afternoon, how do you expect to do the rehab program?” I looked at her blankly, not quite believing the question to be honest. “Um...well, I thought that the program was there to help me get better and gain my strength”. Her response– well we don’t adjust the programme to your needs, you have to attend all of the sessions or we’ll kick you off (it seems having no spoons isn’t an acceptable answer in this clinic). She went through the timetable which starts at 9am with a physical session every day and goes on until 4 or 5 with only a break for lunch. I’m aware this is the schedule of a normal working day but I can only ‘do’ for an hour or two at a time (on a good day) before needing to have a rest and recoup my energy. Whenever I asked her a question about the programme, her response always included the fact that ‘if you’d turned up at the right time then you would have known the answer to this’. Obviously, it was an honest mistake. I was already feeling dreadful about the fact that I had got the timings wrong, it’s not like I did this on purpose, yet she still felt the need to remind me about this over the session no less than five times.

At some point she brought in a Physio to go through the all important presentation that I missed. By now, they were making it quite clear that they thought I would be best suited to doing a rehab programme in the hospital instead of in the hotel. I hadn’t been prepared for this AT ALL. Firstly, I had only been aware of the hotel based program, and that was what I had in my head of where this would be going. Somewhere where at the very least I have my own room to go to at the end of the day. But no, in the hospital programme there is only an 8 bed dorm (it can get quite noisy, we suggest you bring some earplugs if we do accept you). Honestly, they couldn’t have told me anything worse. I’ve already told you before how I am really not comfortable with spending nights away from my own home. I’m getting better and have spent nights at my parents house without having meltdowns (and of course on holiday, but that’s kinda different). The idea of having to spend 3 weeks living on a ward with 8 other people genuinely fills me with anxiety and unease.  I REALLY need my own time. A space of my own I can hide away in if I need to, and there just isn’t that available. I struggle with sleeping at the best of times, I have nightmares and often wake up in the night. I’m really sensitive to noise even with earplugs in. Add to that the idea of eating hospital food all that time...I’d rather starve!

They said they were worried about my ability to get myself from my room to my sessions without harming myself, or falling over. I found this pretty patronising to be honest. I explained to them I’ve lived alone, without care, ever since I’ve been significantly ill (bar a year with my parents). I’ve never had home help and I’ve always managed. I think this is the point where I realised what was so horrible about the whole appointment, I felt like I’d been attacked for an hour and a half, because their response was ‘You ARENT ill’. I’m sorry? “You don’t have a cold or the flu or anything, you aren’t ill” “Well, I have a genetic disease...” “You have a syndrome, you aren’t ill” At this point I gave up. I couldn’t believe that they were going to fight me about language I use to describe myself. I’m still very uncomfortable with referring to myself as disabled, even though I know that is what I am AND WHO THE FUCK ARE THEY TO SAY OR DEFINE WHAT I AM AND AM NOT.

When I explained my reservations about the intensity of the programme, their response was to tell me that they’d seen thousands of EDS patients so they know what they are doing. I’m no different to them. Oh and another reminder that I have to fit into the programme, they don’t change the programme to fit into the patient. Well, thanks. I have never really fit nicely into boxes. I’ve always been on the outskirts, carving my own way through the world. So I left feeling like once again in my life, I was trying to be squeezed into a box that I had no hope of fitting into to, and yet if I don’t, I will feel like I’ve failed.

I left that appointment feeling like I was bruised and battered, like I’d failed. I have a feeling they aren’t going to let me on to the programme, and even if I get a place, I don’t know if I will be able to do it emotionally or physically. So I feel like I’m back at square one, because I was under the impression that was my last chance saloon. I’m not feeling all that hopeful about it all at the moment....

HOWEVER. There was one HUGE positive about the day, hospital transport. Oh my god this is amazing! Usually the idea of getting to my London appointments is pretty much the biggest worry I have. I’m really not great with trains (can’t walk through the train stations, get stupidly anxious etc) and I certainly can’t drive that far (particularly not in my banged up little motor) so it’s often been a very expensive endeavour getting me there. Until we found out that I qualify for NHS transport and OH MY GOD IT WAS INCREDIBLE! I had a lovely man (Piotr) pick me up at my home in an extremely comfortable and clean car and drive me all the way to my appointment. Afterwards he let me have a cry and a cuddle with my parents before taking me home and chatting to me all the way (I think he could tell I needed some distraction). Seriously, the NHS has some failings but it gets some things VERY right.

So, another appointment that left me feeling less supported and more despondent about getting better, but at least there was a positive about the day. I’ve now had a week to mull it all over and I feel better than I did. At the end of the day, there would be no point me doing a treatment that would cause more harm than good, but I’m left feeling quite miffed. I don’t understand the aggression that I received, or why they’d even ask how to make the programme better for the patient if there is absolutely no flexibility. I’m also very confused, because I was left with the impression that I’m not well enough to do the rehab. I have to say, that makes no sense to me whatsoever. 

FOMO and a not-very-summery shepherds pie

**This was written on Saturday morning but then I got whisked off to the beach with Mr SF and our lovely friends after they saw the parade, then I got distracted so it's only being published today! **

I’m a little bit fed up this morning. Ok, so I’m generally not a morning person and am rarely exactly jumping for joy, but this morning it is for a different reason. Today is Brighton Pride. It is, as you can imagine for the most gay-friendly town in England, one of the highlights of the calendar. There’s a huge parade and city-wide parties and events. Everything is covered in rainbows and people are very much in the party spirit. It is a whole day affair with the parade kicking off the celebrations in the morning, with a festival type event in Preston Park and a street party in Kemptown, it doesn’t finish until the last reveller finally leaves. So far since living in Brighton I haven’t been able to go to the parade, quite simply I can’t stand up that long and the idea of being packed in a huge crowd that is just standing there waiting to watch something and relying on my legs fills me with unease. And so this morning I said goodbye to Mr Spoonie Foodie as he went off to do something that once again, I just can’t join in with.

People often talk about their fear of missing out. FOMO is an acronym well used on the internet; people have FOMO about a night out, or a birthday party or perhaps a gig. I don’t think I am alone in saying as a spoonie, I have FOMO on life.

Now I don’t mean to sound too depressed and down. I’m actually feeling pretty happy at the moment. I’m coming to terms with my illness(es) and know that things are moving (albeit very slowly) towards more treatment and help. Mr Spoonie Foodie has now moved in and after an initial 4 or 5 days of him rushing around sorting things whilst I felt uneasy and weird, we are settling into a really nice living situation. I have lovely friends (although too many of them leave Brighton for the big bad smoke) and as I have said before I have an amazingly supportive family. I’ve also got an amazing summer lined up for the first time in three years and I’m so excited. Mr Spoonie Foodie is a teacher so although term time is fraught, he does get the bonus of having a wonderfully long summer holiday. We’ve got a friend visiting for a week who currently lives in Taiwan and we’ve got a 2 week holiday to Croatia booked. With him to help, the flat is much easier to manage and I’m loving having somebody to cook for. So I’m really not at all miserable at the moment, but on days like this my FOMO becomes reality and I’m reminded of all the things I haven’t (yet) been able to achieve.

So, I’ve been thinking and I think I’m going to get a wheelchair. This is something I’ve been considering for a while, but I just haven’t wanted to. I definitely have in my head the idea that if you can walk, you should try not to use a wheelchair (I’m not saying this is right, obviously it’s not, it’s just amazing how strong a role societal pressure, stigma and stereotype can play in your life), and I can walk...just not every day, or very far, or comfortably, or without possible future repercussions. But a wheelchair has always scared me. I worry I would get too dependent on it, become lazy and, without meaning to sound too shallow, I’m rather scared of getting fat. However, I am starting to see how a wheelchair would be so enabling. In a wheelchair, I could go and see the parade because I wouldn’t have to worry about having to stand up for too long. I could go to day trips without worrying about my energy going on just getting myself around and Mr SF and I could actually ‘walk’ along the seafront once again (well, parts of it at least!) I’m scared. I’m scared because I’m worried somebody will judge me when I get out of it to look at something or go into a shop. I’m scared that I’ll feel different and that people will treat me differently, but when I think of what a wheelchair might let me do, those fears just pale in comparison.

Illness (be it mental or physical) can make your world very small, it is time to expand mine again!

I wasn’t going to post about all this stuff, what I actually wanted to tell you about was my shepherd’s pie I made last night. Oh my! I had leftover meat from a slow roasted leg of lamb and despite it being summer and really not the time to eat shepherd’s pie, I really couldn’t resist. This is a fabulous recipe to use up your leftovers as you can also use any leftover cooked veg, adding them in at the end with the broadbeans and even turn your roasties into mash for the topping if you have any spare.

I didn’t exactly measure or weigh everything particularly carefully, but here’s how it went...

I had a leg of lamb that I roasted, this weighed about 2 kg. 3 people ate that roast, but two of them were Mr SF and a male friend so we can probably count that as 4 people’s worth of meat. The shepherds pie feeds at least 4 people and is filling heavy. With a couple of side dishes you could easily stretch that to five or six people, just don’t let Mr SF serve himself (he ate HALF this shepherds pie, wondering why he could barely move afterwards). If you have less meat it is really not a problem as you can just add more veg, some lentils would work very well to bulk it up if you needed to. Just add more liquid and simmer them until cooked along with the meat.  The broad beans go really nicely with the lamb but the only reason I used them is because I have been getting organic boxes recently on a half price deal and I have been INUNDATED with the buggers! This was my last lot to use up though (and I’m going to request no more thank you very much!)

Ingredients

Leftover roast lamb(about 750g)

Large onion

Carrot

2 cloves garlic

3 large (ripe) tomatoes (or you could use a tin or peeled plum tomatoes)

1 teaspoon sugar

Handful of broad beans

Approx 300ml chicken stock

A good handful of fresh herbs – I use what I have in the patio which is sage, tarragon, rosemary, parsley, oregano and basil. Some dried ones would be fine here too, just add them with the stock. 

Olive oil

Salt and pepper

3 large baking potatoes

1 sweet potato

Butter

Dice the onions and carrots. Pod the broad beans by splitting open their cases and popping out the beans.

Get a pan of water on a rolling boil and add the broad beans, cooking them for 2 minutes before dunking in iced water or running under a cold tap until they are no longer warm. I like to take their greyish skins off and they should just pop out of them once they’ve been in the water, though sometimes they need a little encouragement with a fingernail. I also halved/quartered them but this really isn’t necessary.

On a low heat, sweat the onions for about 5 minutes until beginning to soften. Once they start to go a bit translucent, add the carrots and garlic. Cook for another 10 minutes until the carrots are softened, stirring to ensure nothing burns.

Add the tomatoes and sugar (this just takes away any back-of-the-mouth-tang some tomatoes can have) and turn up the heat to medium-low. Cook until the tomatoes start to break down (about 5 minutes) before adding the lamb (plus the fat/juices that have congealed onto the plate, not pretty I know, but by gum is it tasty!) and the stock – you need the liquid to come about ¾ way up the lamb.

Simmer this mixture gently for about 20 minutes until the meat has softened and is easily broken apart with your wooden spoon. This process may take longer depending on how tough your meat was to start with, but fear not because this should revive any tough old soul. Add extra liquid if it starts to dry out. The mixture is ready when the liquid has thickened and sticks to the meat and the meat is fall-apart tender. Break up the meat into bite size pieces with your spoon. Add your chopped herbs and broad beans, stir well and taste for seasoning, adding salt/pepper if necessary. It was difficult not to eat it all at this point and would make an amazing alternative meaty sauce for pasta.

Whilst that is simmering, peel and cut up your potatoes (sweet and non). Add them to separate pans and cover with cold water. Bring to the boil and cook until tender (10-15 minutes). Drain and let steam for a minute or two before mashing with LOTS of butter (I used about 50g in all), salt and pepper.

Assemble your pie. Make patterns with your fork not just because it is pretty and fun, but also because the uneven surface will ensure more crunchy brown bits (and we all know those are the best). If you fancy, cover the potato with grated cheese. Then pop it in the oven at 180 for 30-40 minutes until the top is golden and crispy and the sauce is bubbling.

A delicious homely dinner, not the prettiest but nobody will care.