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!