Saturday, 6 August 2016

Chaos

Life has been it's usual slightly chaotic self again lately. I've been managing to find some crafty time, but at the expense of exercise time. I've not done any proper exercise for a while now.

My gym membership expired at the end of July, and I took the decision not to renew it partly down to cost, but also to try and make me self-motivate to exercise at home. After all, what is the point in having 2 yoga mats, an exercise ball, skipping rope, weights, a kettle bell and an exercise bike all at home if you're never going to use them. Needless to say though, I haven't quite succeeded at the self motivation part - instead I've been doing other things.

This is going to change though, because I can definitely feel the difference in my joints, and my body as a whole when I don't exercise. What I'd love to do is reach a point where my body can tolerate the impact of running. I've got it to a level where it can tolerate quite a large amount of walking, so now it's time to increase that to running. I've always been envious of runners you see. There's something so freeing about it all.

I guess it's going to be a case of taking the time to re-train my body to do exercise and cope with it, and then it'll be a case of building it up slowly and gradually. I know I need to improve the strength in my ankles before I can even contemplate starting to run, but I'm hoping I'll get there!

Maybe if I can get to a point where I can actually do a fairly decent run, I could do a fundraising run for Ehlers Danlos Syndrome research, and wouldn't that be something!

Sunday, 17 July 2016

Quick Bites

As part of my health kick, I've been trying to find something that satisfies my naughty biscuit craving.... And I've found one that's not perfect but it's pretty darn good. These "cookies" have the same texture as the middle squidgy bit of a really good (really naughty) cookie.... and they're only 3 ingredients!!!!

All you need is 2 ripe bananas, 1 cup of oats, and then an extra of your choice, I like to use a couple of *small* handfuls of dark chocolate chips for mine, and they are super yummy.

To make these is super duper easy...


  • Preheat your oven to about 180 degrees celsius.
  • Line a tray with foil or greaseproof paper.
  • Peel and mash the bananas. If your joints aren't up to mashing, then you can use a food processor for this bit.
  • Mix the cup of oats with the 2 mashed bananas.
  • Add any yummy bits like chocolate chips, raisins, nuts, etc at this point and mix well again.
  • Place spoonfuls onto the tray, I normally get between 8&10 depending on the size of my spoonfuls, 
  • Put in the oven for 15-20 minutes until they are starting to brown off.
  • Allow to cool for a brief spell, then peel off the foil or paper.
  • ENJOY the chewy yummy goodness!

This is the pre-oven cookies. They look like the real deal even at this point...

And the finished product:


NOM!

Tuesday, 12 July 2016

Flare Up

Lately I've been talking a lot about what a difference exercising and a healthier diet have made to me. I've not had any bad flare ups since I started exercising regularly, I got myself a fairly okay bikini body for my holiday and the pain that I did have was manageable. It was beautiful.

Then I got a great big slap of reality. I came back from holiday and kept telling myself "next week I'll get back on the health kick, the exercising, etc; next week I will". The problem was, "next week" was always put off a little longer, and a little longer.... It didn't matter though I thought, I wasn't piling back on the pounds; I was happy, life was good, it didn't matter. I was wrong.

I'd had the stirrings of a flare up going on for a few days in hindsight, but at the time I didn't realise it as I had gone so long without one. I was just cracking on with life, the constant nag of pain was there, but whatever, it was always going to be there. Then it happened. The murmur of pain became slightly louder. I thought it odd, but I carried on. I went to my pilates class as normal that evening, as sometimes this has helped me during a flare, and to be honest I thought it would just settle the pain back to a murmur. God was I wrong. That was the beginning of the end that evening. My hips clunked louder than ever with every leg movement, I could feel the grind of the cartilage. My back kept twinging constantly. I struggled to even maintain the lowest level of plank, when I had been just starting to master the main level of plank. It was a disaster.

I came home, I got in a hot shower, and I cried. I poured myself a large drink, took some painkillers (remember kids, DON'T take meds with alcohol, I'm an irresponsible adult, so do as I say, not as I do) and curled up feeling sorry for me whilst I watched the final of a programme I like. Then I went to bed and cried some more until I slept.

The next day was even worse. That murmur had become a shout and scream and bellow. I couldn't walk properly, my back was killing me, my hips were killing me, my shoulders were killing me.... Lets be honest here, my everything was killing me. It was a nightmare. But I wasn't ready to admit defeat. So I dragged my ass into work, and for the first time at this job, my colleagues got to see what my illness really meant to me. We've talked about it in passing before, but I don't think they've really ever seen it as a serious problem as they've never seen me not coping with it. But this time they did.

They were supportive, thankfully. They did their best to make me laugh, to minimise the stress on my joints, and ensured they offered to adapt my work tasks. I hauled my ass through that whole damn day, and was exhausted. But I carried on, because I knew I needed to this time. I was not ready to admit defeat to my body this time.

Thankfully, having forced myself to take a walk that night as well, to try and ease out some of the pain, I woke up to just a chatter the next day. It was in that moment that I realised what I needed to do. I needed to get back into routine, and exercise again and eat healthily. So that's what I've been doing. I've mentally committed to trying to do at least 20 minutes of some sort of exercise every night, and hopefully I'll get myself back to where I've been of being in control of this beast.

Saturday, 9 July 2016

Busy Bee

Life has been so crazy busy for me lately. I've been running at pretty much maximum since my last post, and I just haven't really had chance to get near a (non-work) computer. It's been ridiculous.

So, let's do a bit of catch up then... Around the last time I wrote, I was heading out to Santorini for a holiday with my beloved other half, and to watch one of my friends tie the knot. It was pretty darn exciting, and part of the reason I had been working so hard at eating healthier and exercising more, as I really did want a better beach body. It wasn't perfect still, but it was a darn sight better than what I started 2016 with.

Whilst in Santorini, I had to test my limits, a lot. But it was all for the better, and it turned out I got to see a real improvement from all the exercise I had done. Our hotel was halfway up a very steep hill, and whilst this meant it was only about 5 minutes down to the beach, it did also mean that it was about 15 minutes back up to the hotel. Nightmare. But none the less I managed to do that climb every day, at least once a day, and more often than not, I did it twice a day!

The first time we did it, I thought I was going to pass out/puke, but that was also because it was 2pm, sweltering hot, and I was tired out from exploring the beach front. I recovered much quicker that I ever used to before though, and was happily by the pool not even 15 minutes after reaching our hotel.


This was the view from our balcony; as you can see we were pretty high up, and if you can see the car in the second picture, you get a bit of an idea of how steep the hill was!

Anyway, I soldiered on with that, and went off to watch my friend get married and enjoyed a wonderful evening with her, to then go on to face my next challenge!

We booked an all day boat excursion to see some more of the island, including the volcano, a smaller island off of the main island, and ending in Oia. This day really put me to the test again, as it involved climbing up the volcano over uneven, stoney ground. It was bloody hardwork and near on killed me.


But it was worth it.... once we stopped off at the little island, and had a spot of lunch, I was pretty tired, but we still had my next challenge to undertake - the 280 steps from the port up to Oia, the place where pretty much all beautiful pictures of Santorini are taken, and THE place to watch the sunset. I had to get there. There was the option to pay €5 for a donkey ride up to the top, but I wanted to do it off my own steam. So I did it. It took me a long time, and I had to take plenty of breaks. I wanted to cry, but I made it. And that was the most satisfying achievement I have had in a long time... Boy did I get a reward for it to...

So, that was my holiday, and one of my *many* reasons for my large absence from the blog lately. Never fever though, normality will be returning hopefully.

Wednesday, 1 June 2016

Cheating Pizza

The other day I came in and I was exhausted. I only needed to cook for myself, and I just couldn't face going through a huge effort for anything. But I wanted food and I didn't want a takeaway. I didn't know what to do.

I had a little rummage through the cupboards and the fridge. I really wanted pizza, but we didn't have any in the freezer, and I had already ruled out a takeaway. I was wondering what I could do to ease the craving. Then I figured it out. I could make a fake pizza, and it would only take a couple of minutes to make, and it didn't matter what food was in the cupboard as I could easily change it up.

So I made a cheat pizza.... It wasn't perfect, but it was pretty darn tasty, and I enjoyed it. This was my one that night.


So, what do you need to make this tasty thing? Well the beauty of it is that it's pretty flexible. The main things you need are:

  • 1 Tortilla wrap
  • Handful or 2 of grated cheese

For this one I also used the following ingredients:

  • 1 tablespoon of tomato puree
  • Handful of frozen sweetcorn
  • Handful of pre-cooked prawns
To make this cheat pizza is so straight forward. You can either oven or grill it, depending on what toppings you use. Grilling will cook the tortilla quicker, so only use this if you've not got a topping that needs to be piping hot. I used the oven for mine as I wanted to make sure my prawns were heated through thoroughly before eating. Nobody wants to end up with a poorly belly!
  • Warm your oven or grill to arrange 200 degrees celsius.
  • Place your tortilla on a tray
  • If using tomato puree, put this on the tortilla and spread it around evenly
  • Scatter your cheese over the tortilla. I like a lot of cheese so I used a fair bit for this, if you don't like it so much, then don't use too much
  • Add any other toppings on now. You could use pre-cooked chicken, pre-cooked bacon, peppers, spinach, tuna, ham, pineapple. Whatever takes your fancy, just remember to not load it up too much as the base is not as stable as a normal pizza base!
  • Pop your tray with the "pizza" into the oven or under the grill. Then watch it carefully. Grilling takes about 5-10 minutes, but do keep an eye on it. In the oven it may taken 15+ minutes. Just ensure that anything that needs to be reheated thoroughly is done so (like chicken or prawns).
  • Once done, remove from the oven/grill and slide onto a plate. Then cut with a knife and enjoy!
I'd recommend cutting it into smaller slice than I did on the one in the picture as I found it to be very unstable and that make eating it more difficult. It was pretty tasty though and definitely made for a fairly satisfying dinner without too much exertion!

What toppings would you use when making this?

Saturday, 28 May 2016

Time for Something New

I had to make a big decision recently. It was, what feels like, one of the first big decisions I've had to make regarding my health. Sure, you could count the decision to eat healthier and exercise more as a relatively big decision, but that didn't feel as big as this....

As of next week, I will no longer drive a manual vehicle. I am getting rid of my lovely Honda Civic that is a 2.2 turbo diesel, 6 speed manual, for something else... I've got a Honda CRV automatic.

This was quite a big decision for me to make as I actually really enjoy driving. Whilst I hate when I don't know where I'm going, and hate driving with my boyfriend as a passenger, I do genuinely enjoy driving. I've come to enjoy the power that I get from my civic, and knowing exactly how it handles. Getting off to a fast start away from traffic lights, etc. Driving manual has always been a pleasure.

That was, until a couple of years ago, when I started to have problems with my left ankle. Now I'd already reached a point where I couldn't drive long journeys before this time. I can't sit in the driving position for longer than about 45 minutes without a break, and after that break the time gets less and less until I've had a sleep. It just gets too painful and I get too stiff. But then I started to have problems with my ankle, and it was on the side you need to use to change gear. I went through a 2 week flare where every time I drove I was crying because it was so painful to change gear. I avoided driving at all times apart from where absolutely necessary.

Thankfully that bad flare calmed down, but it has had a a lasting effect. Now I can no longer cope with being stuck in traffic. The constant need to move your foot up and down on the clutch as you crawl along is agony. I can be stuck in traffic for only 15 minutes and it will leave me exhausted, crying in pain, and on the verge of vomiting as my pain levels peak. Unfortunately for me, I often get stuck in traffic.

So something had to change. I was just coming to terms with the fact that in a few months I was really going to have to look for a new car, when my other half rang me. An automatic CRV had become available, did I want it.

We had a few long talks about it. Was a really ready to commit to this? Would he still let me drive his car occasionally to keep my hand in with drive manual? Could I afford it? Was this the right option?

Eventually it all boiled down to one thing. I had to do it. I had to take the plunge and for the first time in a long time, let my condition rule a decision. So I bought the car. I have to be honest, I do love it. It's going to make things so much easier and as it's a taller car it's going to be easier to get in and out of as well, which is another bonus for when I'm having problems.


So here is my new baby. She really is a beauty, and I'm sure I'm going to enjoy driving her.

And what did I learn from all of this?
Sometimes, just sometimes, it is okay to let this debilitating illness rule your decisions.

Wednesday, 25 May 2016

Dinner Time

As many a zebra will know, dinner time can be a bit of a stress when you've got to feed yourself, let alone feeding anyone else in the Hopefully y. I have a deal with my other half that I don't have to do any cleaning, but I do have to cook instead. I, personally, find cooking uses less spoons than cleaning, so it's a deal that works really well for me. It also means that if I'm having a really bad day, I have alternative options of providing my chore, either frozen pre-made dinners that I've done on a good day, or good old fashioned take out.

Cooking can still be bloody hard work though, even when it's not a really bad day. Sometimes just the effort that goes into providing a nutritious meal and trying to get some back up meals out of it can be difficult. So I thought I'd start to share some of my go to meals. I'll try to be as thorough in sharing exactly what is involved in the process so you can see how this could affect your pain levels and use your spoons. All of these meals are quite plain and simple as well, as my other half is quite a fussy eater. He would genuinely live on meat and chips if I'd let him, with sides of crisps, chocolate and yoghurts.

Anyway, the first meal I'm going to cover in this set of posts (which I'm going to label as "SpoonieFeeding" to make it easy to find them), is going to be one of my weekend favourites. I grew up having this meal at home as a child, and I used to hate it, but now it's one of my favourites. It's a real winter warmer, but definitely still nice to have any time, just can be a bit much on a hot summer's day. It is a basic beef casserole and this is my mother's recipe.

Ingredients:

  • Stewing beef - I buy just basic stuff from the supermarket & normally get around 900g
  • Carrots - I use 3-6 depending on their size. 
  • Celery - I use no more than 2 sticks as it is only me that eats this bit, but you can use more if you all like it
  • Onion - this is optional and I don't always use it. If I do it's anywhere between 1/4 of one and a whole 1.
  • Gravy - you want at least a pint of the stuff
  • Beef stock cube - 1 of these bad boys should be sufficient
  • Salt & Pepper - pinches to taste
  • Tomato puree - I use between 1 tsp and 1 tbsp
  • Worcestershire sauce - this is also optional but you can't really taste it in the dish, it just helps add to the flavour. A glug or two of this is all you need.


Method:

  • Firstly, you obviously want to make sure you've got all your ingredients together. It sounds silly, but I have lost count of the number of times I've started making this and realised I've run out of something, today's images will come from a key example of this, where I realised I had no celery. Oops.
  • Make sure you have time to make this. You need to allow at least 3 hours for this to cook, so it's definitely more of a day off make than a work day make... unless you want to cook at a lower temperature all day I guess
  • Make sure you've popped your oven on. You're looking for about 160 degrees Celsius. This is a nice low, slow cook.
  • Get a casserole dish, and chuck your meat in. This should ideally be defrosted if you've frozen it, but I often forget to get mine out with enough time to defrost, so mine is usually partly defrosted. For this reason I leave my casserole to cook for an extra hour generally, but find what works for you. The instructions on the meat always say to brown it first, but I've never bothered and I don't find it gives me an issue - one less pan to wash up!
  • Now you want to peel your carrots. I sometimes find using peelers really hard. I've got one that has a nice chunky handle on it and the blade works either way. I actually got this one from John Lewis and found it to be very spoonie friendly. You can get carrots that don't need peeling, and these are a good option too. 
  • Once you've peeled (or washed) your carrots, you want to top & tail them, and then cut them into nice chunky lumps. I keep mine about an inch long, They're going to be cooking for a good long while so you want them to still look carrot-y at the end.
  • Wash your celery and top and tail this. Again, you want to cut it into chunky pieces. At this point you can also add finely diced onion if you're using it, or any other veg you might want to use like leek, parsnip, etc. The joy of this meal is that it doesn't have to be exact.
  • Throw your carrots, celery, and any other veg you're using, in with the meat in the casserole dish. We're nearly there now, and there's not much left to do before you can go back to having some self-care or curling up on the sofa. 
  • Now is the time to add your tomato puree, Worcestershire sauce, and salt & pepper. I also put in my stock cube now. I find the Oxo beef cubes quite easy to crush into a powder, but you might prefer to use a liquid one that you can measure out, or the stock pots. Do whatever is easiest for you. You don't need to mix this up into a full liquid with boiling water, just add it as is.
This is my casserole in process, just before I added the gravy. As you can see, I forgot to make sure I had celery beforehand. Oops!

  • We're now at the last stage before you can go relax for a few hours. You need to make some gravy up. For this, you want to make at least a pint. Do this in whatever way you normally would with boiling water. I use bisto but you might use something else. Once you've made it, pour it over everything else in the casserole dish and give it a little stir.
  • Now all you need to do is cover it with your lid and put it in the oven. Depending on your wrist/finger strength this can be a little difficult sometimes, and please be cautious if you suffer from bad shakes. I've burnt myself on more than one occasion because of this. 
  • Once the door is shut, you can go and chill. Put your feet up, watch some tv, remember to stay hydrated. Make a note of what time you put your dinner in the oven.
Finally, when you're getting close to the end, you want to do something to go with it. You could just serve it in a bowl and have some bread rolls with it. I like to serve mine with mash, so about half hour before it finishes I peel a few potatoes and boil them down, getting my other half to mash them afterwards. When I do mash, I serve with peas as well just to get a few more veg into Mr. Fussy.
Another nice little treat is to put dumplings in your casserole. To do this just buy some suet and make it up as per the instructions. Put these into the casserole about 20 minutes before it finishes and you will have some stodgy loveliness to go with your casserole. Yummy!

The great thing with this dinner is how easily you can play with the volumes. The amount of casserole I make serves 4. We have half for dinner on the day, and the other half gets frozen to be reheated one evening after work in the future. All you have to do is defrost it, chuck it in a saucepan and gently bring it back up to temperature; it takes about 30 minutes and means you have another easy meal for in the week. You could easily make this to serve more people though and use it if you've got people coming over, or to feed a whole family.

Here's where there should be a finished picture of my casserole, but I got a bit over excited about food and forgot to take one. Oops! Hopefully I might get one when I do a meal with the leftovers that are now ssafelyin the freezer. Nom!

Sunday, 22 May 2016

Finger Pain

Ever since I started exercising regularly, eating healthy and losing a little bit of weight, my pain levels have been slightly more bearable and I haven't had horrendous flares (touch wood).  I get the occasional bit of tummy ache when I do eat badly now, but nothing like the problems I was having at the end of last year. It's all been pretty good.

The last week though, has not been so good, and I'm not sure whether there is something I can do to make it better, or if I need to continue to accept that no matter what I do, sometimes my body is still going to hate me in pretty mean ways. I've made no real changes to my routines or anything else, but all this week my fingers have been giving me problems.

I'm talking like stupid levels of pain through every joint in the finger; pains that radiate down to my wrist and out through my entire hands. The time of pain that makes you want to pull your fingers off. It's been very strange and infuriating.  It's also given me very restless fingers in one hand. There's been a couple of days this week where I've not been able to stop my fingers from twitching and tapping and moving around, regardless of what I do.

I don't really know what to do to try and help ease this one. I've not had problems with my hands for quite a while. I used to get really bad shakes but discovered this was more anxiety related than anything, and as long as I keep my anxiety under control then the shakes stay in control. But generally I only get really bad pain through my fingers when I'm in the midst of a full body flare.

It's bizarre and rather unnerving, but I'm going to deal with it as best as I can. I suppose it's a case of watch this space to see what happens.

Friday, 6 May 2016

Leaps and Bounds

Things have been really good lately. I'm not trying to brag, I'm just appreciating this fact for once. The other weekend I managed to walk - in low heels - about 1.5 miles from where I had been drinking in town with my friend, back to my house. Admittedly it was all down hill, and I had had more than a couple of drinks to take the edge of any pain, but none the less, it really wasn't too bad. I didn't even wake up in horrendous pain the next day like I would have done back in the day.

It may almost seem like I'm "cured". That is until a new version of "bad days" arrives. Where my knee keeps popping and feeling like it's not quite in joint all evening... where my "good" hip won't stop grinding every time I walk further than 2 steps for most of the day.... where my big toe is causing me such agony that changing gears whilst driving is pretty agonising.... where my fingers feel like they're on fire every time I type.

So no, I'm not cured, but my realities are better than they have been for a while. My flares aren't so intense these days. I still have them, but they aren't quite so vomit-inducing. They don't make me want to hack the body part(s) off with the nearest implement I can find..,. They're far more tolerable.

I realise that lately all my posts have been about "look how well I'm doing at the gym", and "look at all these healthy meals I'm cooking", "look at all this energy I have"... So I felt I needed to bring a hit of the less positive reality in as well. Just to keep on point, y'know.

Exercise works for some people. It seems to be easing my symptoms, and for that I'm ridiculously grateful. But it doesn't cure me. It doesn't take this bugger of a condition away. My life is still owned by this disease, I'm just winning some control back.

If you've got the ability to do a small amount of physical exercise, try it. It might be worth it. Try not to let the first bad day with it put you off. I let that happen too many times. What I didn't learn until recently is I have to find what works for ME. Not any one else, just me. It might be a case of walking around the house twice just to get a little more tired. Just to raise the heart rate slightly... Or maybe just taking that can of beans and doing some curls with it. Just to make your arms ache a little. All these little movements can slowly add up to much more.

Likewise, if you can't do exercise, don't beat yourself up. It's not worth it. Living with Ehlers Danlos Syndrome means you've got to find what makes your life bearable, and that means finding the right self-care for you.

Friday, 22 April 2016

Healthy Healthy Healthy

I'm at it again.  Showing off my healthy dinners. I gotta be honest though, yesterday is the first day I've actually full on adored and demolished my healthy dinner, and didn't have a slight bit of resentment for it's healthiness. What makes this even better is I did a (very rough) calorie count on it, and it came in at under 400 calories. And I was stuffed. It was basically a miracle.

Here's a snapshot of the dinner I cooked after spending a good half hour at the gym....


This little beauty consisted of my new favourite obsession; courgetti that was seasoned with a small amount of chilli powder and a teaspoon of tomato puree; spinach, cauliflower and salmon. I topped it off with a little bit of mozzarella cheese as well done to myself for being healthy. It was delicious.

In other news, I've been busy busy busy working on my stamina and general wellbeing to try and improve my ability to cope with my condition. It's not been easy, but hey, it's worth it. The gym is going well, I can manage 15 minutes on the cross trainer at a reasonable pace and not be completely dying afterwards. I can even go on to do 10 minutes on the rowing machine if I have a small break between. Both of these low impact exercises are making a difference to my general strength and fitness levels and it's really comforting to know I'm getting somewhere at last... In fact, I've reached a point where I can begin weight training again as repetitive movements aren't the agony they were before. They still can hurt a fair bit, and I'm still having to learn to understand the warning signs that stuff isn't workout pain, it's EDS pain, but I'm getting there.

Give me some time and I might get to look like this eventually
Haha... in the distant, distant future maybe.