National ME Awareness Day

You may remember me posting a year ago, you may not.  Today is National ME Awareness Day.

I have ME, I've had it now for over 8 years. It has changed my life significantly, in some ways for the better, in many ways for the worse.

It's hard to write anything about this without being political - in the current climate within the UK, disabled people are being demonised by the government, pilloried in the press for having the temerity to be disabled or sick, and generally be a drain on society, whether we are or not.  There's something about how our society treats its more vulnerable members that gives a true measure of it. We seem to be failing.

I'll give you an example: last night I went to see a band I really like. I love live music, and write for another website, www.new-reviews.co.uk occasionally. The venue was standing only - I knew that in advance, and knew that would mean significant pain and that I'd find walking back to my car very difficult, and that today I'd have to rest. What I didn't factor in was the behaviour of 2 people at the gig. Half way through the set, two people pushed their way through the crowd to stand in front of me, shoving people out of their way to do so. They then repeatedly kicked my stick and pushed me to try to make me move. I asked them politely to be a little more careful as they were in danger of knocking me over. One shouted "Just because you've got a stick, that doesn't make you better than me", and carried on pushing me. I pushed back, hard, using the pointy bit of my stick handle. That was hard to do: it's not my normal behaviour; I don't like drawing attention to my disability; I felt very self conscious. Eventually they left, shouting "Lets go, it's not worth being here" into my face. I felt vulnerable. 

It would have been easier in the short term to have given in to their behaviour, and move out of their way, but I couldn't do that as that would have been accepting its ok to treat me like that. It isn't. Just because I need tools to help me doesn't mean you get to shove me around. I don't want any special treatment, I just wanted to be left alone to enjoy my night out. I did, the band were great.

Walking back to my car was hard, as my legs didn't want to bend, and getting back into my car was a challenge - I got one leg in, but the other wouldn't bend so I had to sit for a while with it sticking out. I've not been able to go to church this morning as I'm exhausted, but I have managed to have a shower and get dressed!

ME is a hidden disability. I don't look ill, even now, I just look a bit tired, but in reality I couldn't walk up the stairs right now, and probably won't be able to for hours, and am in significant pain. I have to pace myself, and work out how much energy something will take and if its worth it. Last night was, the band were excellent, and I knew I'd have to rest all day today. If it had been tonight though, I couldn't have gone, as I wouldn't be able to go to work tomorrow. I hide how bad it can be, as I don't want pity, but I'm doing that less than I used to. I used to be afraid people wouldn't believe me; that they would think ME was a made up thing, or that I didn't have it really, I was making it up. I don't care about that any more - there are more people in the UK with ME than with MS, the symptoms are similar. As I work in the NHS I have access to up to date research. Current thinking is it is a problem with how our mitochondria store and release energy, so it's a problem at cellular level in our bodies. It's no longer in our minds - it never was, but there was a school of thought in the UK that it was a mental health issue, not a physical health one. Rubbish, as those of us with ME always knew.

Despite the ME, I am blessed. I'm surrounded by people who love me, who support me and who value me. I'm able to work part time, and have enough money to live on. I have a car, which means I can go out; I can't walk far, so public transport is very difficult to use. I get to paint for people like you, who appreciate what I do. Painting has helped keep me sane - even on bad days like today, when I'm too tired to do anything else later on I may be able to paint for a while. 

So why have I written this post? I want you to think. Think about what it may be like, how it would impact your life if one day you woke up and discovered you could barely manage to get dressed, that standing in the shower hurt too much, and that you had to slide downstairs on your bum cos your legs wouldn't work. Contrast that with the 30 mile bike ride you did the day before, and the 2 miles you ran, and the 1 mile you swam a couple of days before that. Now realise that from now on, unless either God heals you, or scientists find an effective cure, that that's your life from now on. That every day you have to work out what you have the energy to do, and the cost of doing more than you can. Read the Spoon Theory. That's my life. Don't feel sorry for me, instead do two things: live your life as if every day is the day before you develop ME, don't put off doing things, enjoy what you have. Secondly, give other people a break, be a little more understanding, be a little more accepting of others' needs.

Thank you. Thank you for reading this, thank you for your support, thank you for your encouragement. 

Prince of Persia

This is what I'll be painting next, as soon as I've finished the bridesmaid frocks:

The Little Engine That Could finished

I've just realised that I never posted an image of the finished painting, so here it is. The person who commissioned it paid $515 at the Solid Saints online auction - all proceeds go to Child's Play charity.

This was a fun little painting to do! I'm still bridesmaid frock making, I'm hoping to start painting again soon.

Living Below The Line

This isn't one of my usual posts - there are pictures, but they're not of paintings, they're of the food I've eaten over the last 5 days.

I've been a bit busy recently, making some bridesmaid dresses - time I'd normally spend painting has been taken up sewing. I'm hoping to start painting soon.

In the mean time, I've been doing the #livebelowtheline challenge this week - simply, buy all your food for each day spending less than £1/$1.50, that's a budget of £5 for 5 days. I've pooled my resources with my husband, and batch cooked. Here's what I've spent:

2x500g split yellow peas                                  98p
9 onions                                                        90p
4 basics carrots                                              40p
5 tins of basic chopped tomatoes 31p each =  £1.55
1 reduced price small loaf                                 20p
4 basic eggs from a box of 6                             80p
4 bags 500g basic white pasta 31p each         £1.50
9 basic apples                                             £1.00
800g from a 1kg basic porridge                          80p
1/2 Jar of basic jam from a jar costing 29p          15p
Bag of basic frozen mixed vegetables             £1.00
12 Basic chocolate mousses                             62p

Total                                                          £9.90 

Meal breakdown:

Breakfasts: Porridge made with water with a spoonful of jam, glass of water.

I didn't like it with jam, so I didn't bother for the rest of the week.

Lunch: Split pea soup made from 2 onions, 1kg split peas, 4 carrots, water - that made 10 portions, which I bagged and froze. Apple. Day 1 and 5 1 slice of toast.

Dinner: Pasta with mixed vegetables in onion and tomato sauce. Chocolate mousse.

Day 2 dinner was poached eggs on 2 slices of toast.

Day 5 lunch - there was some bread left, so my husband had 2 slices to take to work with his lunch, I had 1.

Why have I done this?

To raise awareness about global poverty, and poverty in the UK.

For 4 years, while my children were very small, I lived in financial poverty. I say financial poverty, as we were living on income support - after paying my housing costs, I had £37/week to live on. I paid my gas and electricity bills fortnightly, but sometimes had to skip a week if something unexpected happened. We didn't look poor, I can sew, and so made lots of our clothes, and bought the rest from charity shops. Our children ate well, sometimes we didn't. I know how hard it is to make ends meet, and wanted to challenge myself to see if I could do it again.

The money I've saved by only spending £10 on food for both of us I'm donating to Oxfam. If you'd like to contribute as well, you can here.

Has it changed anything?
For me, yes. I've remembered how hard it is to feed your family when living on next to nothing. I've remembered how restricted your diet is. I've remembered how blessed I am - I've only done this for 5 days; millions of other people have no choice. I've remembered I can turn my tap on, and clean, fresh water comes out.

Will I do anything differently?
Yes. I've decided to look at how I shop, at the things I buy that I don't need to, and alternatives - both from the shops I buy from, and the produce I buy. I  buy Fair Trade products where they're available, I'm also going to be buying locally sourced produce as well.

As a family, we already raise money for Oxfam - that's the main purpose of this blog. We also work with homeless people on the streets of Manchester on Friday nights - running a soup kitchen and taking hot food and clothing out on the streets (this done through our church). We are also investigating setting up a food bank - absolutely repugnant to me politically, but an unfortunate moral necessity in the UK.

Our meals this week have been nutritionally inadequate - I'm not a dietician, but even I know that you need calcium in your diet. Although I did have vegetables, there was very little fruit, and the only protein came form the eggs and split peas. There weren't enough calories, either. Men need 2,500 calories a day, my husband had little over 1,200. Women need 2,000 calories a day, I had between 800 and 1,000.

This is a challenge coordinated every year by Unicef. This is the UK site, this is the USA site, this is the Canada site, this is the Australia site, this is the New Zealand site. Why not join in next year, and see what you learn.