My new whacking stick, oops I mean walking stick

September 29, 2012 § 2 Comments

Well I mulled and mulled over the idea of a walking stick.

Friends and family kept going on saying I should get one. But I kept resisting because it just seemed so final, so accepting of the disease’s badness. In the end, I was at a small family gathering and my sister in law’s, mother, had a rather dapper one with her, so I ‘had a go’ and actually it was pretty good. It was like something to lean on when you’re tired: Not a bad thing at all. In fact, I felt kind of cool, like a female version of Steed from the Avengers (although he used a brolly rather the a stick).

So, I bit the bullet and got one. It’s very cool, it has silver spiral galaxies on it.

I’m going to use it and not be embarrassed, or feel ‘old’. I’ll not use it all the time, just when I really need a bit of support.

Also, it has a useful, dual use. I can use it to whack Steve with when I need a glass of water, or a slice of toast, etc.

“whackkkkk! Steve I need a drink”

“whackkkk! Steve get me a slice of toast”

So it is a very useful thing indeed.

Oh and I’ve also found it’s good for poking the dog when she makes a smell, so she moves away from within my nose range.

My whacking stick (me looking a bit grumpy and fat of face (more about steroid ‘moon face’ fun in another post):

Me and my whacking stick, ready for action


Feeling almost normal, even ‘Ballsy’

September 26, 2012 § Leave a comment

The local Chippy, Balls

On the way home from the hospital the other night, as the cupboard was bear, I had to stop off at the local chippy to get us a fish and chip supper for our tea*

Balls of Prudhoe is an establishment of great repute and does the finest fish and chip supper around these parts. It is a veritable feast of delights, including fish and chips, battered pineapple ring and chips, various ‘fritters’ and chips, chips and chips and mushy peas with everything – oh and curry sauce if you’re feeling a bit saucy!

So I hobbled out of my car and into the chippy. I stood there and at once felt quite joyous. I internally shook my head at this and wondered why. Then it hit me, I hadn’t been in Balls since well before I was diagnosed with dermatomyositis, it had been easily 7 months since I stood at that counter and asked for a, “portion of fish and chips and a vegetarian burger please”. It felt wonderful because I felt normal, an ordinary person again, not house bound, unable to even go to the chippy or a local shop easily.

I breathed in that greasy smell of frying chips and looked around at the bottles of vinegar and brown sauce, yesterday’s newspaper and the tired look on the face of the women serving me and I felt happy.

Thank you Balls of Prudhoe for making me feel a little more normal again (not that I ever really am ‘normal’ as it happens).

Oh and yes, my tea was delicious.

* ‘Tea’ is northern UK speak for evening meal. You don’t actually have to partake of a cup of tea with it.

Chemo Three Done and Dusted

September 25, 2012 § Leave a comment

Had chemo dose number three yesterday – but it was such a big day (over six and a half hours) that I was totally exhausted after it.  Not sure exactly why it took so long yesterday – nothing different in terms of the the treatment just slower going through the veins. I got this weird rash on my hands and torso over the weekend but after talking to the nurses about it, seems to be some mild non-related allergy.  So the advice – just keep an eye on it.  Which is I guess, all I can really do.  It has cleared up in the meantime, although left me with tiny scabby little sore things – also on the mend.  Other than that, things are going pretty well for me.  I consider myself very lucky.

Like Sus I am also looking after my diet, but nothing too special for me – more just making sure I am eating and eating good, fresh healthy foods.  I’m not a great lover of cooking so easy meals are also big on the agenda for me – lots of fresh fruit and veg, protein etc.  Have to say though, that I always enjoy anything better when someone else cooks !!!!!!  I reckon I might pop over to Sus’s for meal – her’s sound way more interesting.  Sus – you go girl – next thing we know you will be starting a food blog !!

BTW – had to get more things for the head last week.  the hats are great but with some nice spring weather, I have decided I need to extend my range to some lighter head covers.  Needless to say, chemo hats are becoming my next big accessory!!!

A Simple Meal: Thank You Mr or Mrs Salmon

September 24, 2012 § 10 Comments

As I said in a previous post, I’m following a diet that will hopefully boost my immune system and help me fight dermatomyo – shite -is (AKA dermatomyositis).

The problems with following this diet, whilst suffering from this illness, includes the fact that sometimes you literally do not have the energy or strength to cook. My leg hurts often and I am very tired a lot of the time, so sometimes it’s hard to stand for extended periods to cook – and trust me, getting Steve (bless his cottons) to cook for me, is NOT a good idea…

So I rely on easy meals and often ready made meals. When I say ready made meals, I’m here talking about very high quality ones that tend to cost a lot. Therein lies another problem with following a good autoimmune diet whilst very ill – it’s expensive.

However, here’s a simple meal I made, as an example of what I try to eat (I must admit that sometimes you just have to have a plate of gluten free fish fingers and chips).

Take your salmon fillet and add a butter slice and some herbs of your choice – no salt!

Salmon ready for cooking

Wrap it in foil and cook in an oven for about 20 minutes. You could pan sear it, but it makes a right mess in the pan and remember we’re trying to reduce time standing.

Thank you Mr or Mrs Salmon, I really appreciate it

Then use a good quality stir fry mix, or salad, to finish off your meal:

Stir fry in the pan

I use olive oil to fry with, it’s apparently good for handling cholesterol and has all sorts of positive benefits, including preventing colon cancer and reducing blood pressure (things that we DM’ers are at an increased risk of).

When finished, stick ’em both on a plate and eat heartily (unless you have post methotrexate nausea in which case, just try to eat a little bit).

Yum, yum, yum, food for my tum

A simple meal, but by no means cheap. Maybe you know of a good, easy to prepare and cheaper meal?

Thank you Mr or Mrs Salmon, I really appreciate it

UPDATE: An excellent presentation by the USA Myositis Association, on diet can be seen here:

Enjoy yourself, it’s later than you think

September 22, 2012 § 3 Comments

I just thought that it might be nice, this Saturday, to encourage whoever reads this, to dance naked around their living room, arms flailing in the air, singing along to The Specials rendition of “Enjoy yourself, it’s later than you think”.

I can’t dance right now, but soon, very soon, I will be able to and I’ll do it (I might keep some clothes on though, I am British after all).

Might be a good idea to close the curtains!

A really good organisation called Lifespan

September 21, 2012 § 10 Comments

Dinosaur bone cabochon in sterling silver handmade cage

Now here’s an ironic thing.

Every year, for a few years now, I’ve made a piece of jewellery for an auction held by a charity called Lifespan.

Lifespan is a small Northumberland based charity, that helps out sufferers of serious illnesses and their families, cope with the effects of the illness on their life.

The help they offer is free of charge and includes, sitting services, counselling and various complementary therapies. They do sterling work.

So the irony is, that I find myself with one of the diseases that they offer help with. Funny isn’t it how these things pan out.

This year, I’ve donated two necklaces (one of which is shown in the mage above). I haven’t mentioned that I make jewellery – well I haven’t made any for a while as my hands are very shaky and shaky hands cannot make jewellery. Fortunately, I knew the auction was happening, so I made these a while back when I was still well enough.

The Lifespan auction is being held at a gallery in Newcastle upon Tyne called the Biscuit Factory on the 4th of October. I usually go each year and always buy something, as they have utterly wonderful pieces for auction, often by very famous artists, like Tracey Emin, Anthony Gormley and Beryl Cook (yes I feel quite humbled that my work is in amongst those). This year I may not make it, I’ll see how I am. At least I can give them something to auction. Organisations like this are so important. Serious illness affects not just the person who has the disease, but their family as well. I’ve also realised that being ill, for so long, with such a scary illness, affects your mind as well as your body. Having people who understand that and can offer advise and practical help is so important.

Fingers crossed Lifespan get a good crowd and make a lot of money at the auction.

You don’t realise what you’ve got till it’s gone . . . .

September 20, 2012 § 10 Comments

You know how I said I didn’t mind losing my hair – well I take it all back.  Having to look at  a bald head is bad enough – but the itch, well that is killing me.  And to call it itchy isn’t quite right either. It is sort of itchy and sort of sore and irritating.  In any case, I’d kill for a bad hair day in preference to the bald, itchy one I currently have.  To make it worse it is a patchy itchy, sore head  – smooth and soft in places, prickly in others and a little round black spot of stubble on the top of my head (about the size of a coin).  Hideous  – what more can I say.  As much as I love the hats they keep falling over my eyes (because nothing sits on my small potato head head) and I either feel too hot or too cold.  Yesterday in the car I thought my head was going to explode if I didn’t release some heat (ie take the hat off) – but of course then I worried about looking like some weird carjacker.  Needless to say the hat was off before i could get the keys out of the car when I got home.  Fashion and pride has never come at such a high price!!!!

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