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.


  • 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.


  • 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.