Everybody Hurts

Having a rubbish week this week, pain, fatigue, fighting a throat infection, dizzy weak :-(

One of my favourite songs popped into my head Everybody Hurts by REM

"Everybody Hurts"

When your day is long
And the night, the night is yours alone
When you're sure you've had enough
Of this life, well hang on

Don't let yourself go
'Cause everybody cries
And everybody hurts sometimes

Sometimes everything is wrong
Now it's time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you've had too much
Of this life, well hang on

Everybody hurts
Take comfort in your friends
Everybody hurts
Don't throw your hand, oh no

Don't throw your hand
If you feel like you're alone
No, no, no, you are not alone

If you're on your own in this life
The days and nights are long
When you think you've had too much of this life to hang on

Well, everybody hurts sometimes
Everybody cries
Everybody hurts sometimes
And everybody hurts sometimes

So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts

The words are quite appropriate and also remind us that we are not the only one suffering. It also ties in with the post I wrote the other day about things feeling wrong.

Nothing Feels Right

I don't like moaning as I know many are in similar or much worse positions than me and they manage to get on with life and not feel sorry for themselves, but everything feels so out of sorts at the moment.  Anything I do be it essential, necessary or through choice seems wrong.

Take this weekend for example.

On Friday Rob was home early as he had to collect Emily from school as I was not well enough.  As I had bought a great magazine with lots of free from cooking ideas, so we thought we would try something for tea as we had a bit more time with Rob being home early.  Rob found a pizza recipe, but changed it without me me knowing, and it was horrid, no offence to him as he was trying to make it so that we would all eat it, my intolerances and Emily's fussiness are not easy to incorporate.  I was really looking forward to a nice home cooked gluten free meal :-(  But then I sound ungrateful as Rob had made the effort to make it, but I was annoyed that he had changed the recipe not knowing if it would work.  The Magazine has so many nice sounding things, but we are always so limited on time that we seem to eat the same small repertoire of uninteresting food all the time.  I have subscribed to the magazine for inspiration, but wonder now if I will just get frustrated by not being able to try them out either from lack of time or not have the right ingredients.  Again it makes me sound ungrateful as at least I do get a hot cooked meal each day, usually cooked by Rob who also has a full time job.

On Saturday morning I felt really awful, but needed to tidy up, I wore myself out doing that and ended up back in bed by the time everyone else was up and ready to do things.  In the afternoon we went to the cinema, I found it difficult to hear even though its really loud, too loud from a noise point of view, but not clear enough and I had no idea what the film was about, it was a kids film! Glad that I have a CEA card and get concessions, so had not paid full cost for us all.   It was very busy at the complex we went to as it has many other attractions so getting in and out with a wheelchair is difficult.  Being in the wheelchair when busy means you get walked into all the time and you are on a level with a sea of bums, bags and elbows, not much fun!  Emily hates it too as she has to hold on and or get shoved out of the way to get passed people, she hates crowds.  We usually go to cinema Saturday or Sunday mornings think we will stick with that next time it is quieter, but it won't make the film any better!  The next thing we want to see is Cinderella which is released this weekend.  I want to take Emily during the school holidays, but can't get to the cinema without help so need to wait for Rob to have a day off, its so frustrating and makes me feel such a useless Mum and unable to have girly time with my daughter.  We also saw a trailer for Two by Two which looks good.  We have been going to the cinema a bit recently, but its still not an easy option as it is quite overwhelming, takes a lot of concentration and you don't really feel as if you are doing something together.  I still need to rest after doing something like that whereas others are eager to burn off some energy as they have just sat in the dark for 2 hours.  I should be grateful I can get out, but it feels like hard work and not good use of my family time.

Yesterday Emily was in a Gymnastics competition, I spent the morning getting her ready and then we had an early lunch as they had to be there for 12.30.  Again it was very crowded and sitting in a queue of bums, bags and elbows, nearly getting hit in the face by a squash racquet in someone's bag, people pushing past and bumping into me.  The event was quite disorganised and we got in late and then had to sit for 4 hours watching 50 children do the same routines.  I got very uncomfortable and the lighting was awful, spent some of the time in sunglasses!  Each child got about 5 mins in the competition the rest of the time they were sitting over the other side of the room.  Again family time, but not with my family.  Emily sat quiet and still for the whole time, so of course made up for it when we got home.  It was not a good use of my time and energy, all that time to watch 5 mins of my child.  everyone else was in the same boat and it must have been so boring for the children even though they were taking part.  Much of the time people were going in and out of the room and knocked into me each time, I was getting really fed up.  I need to stretch my legs and go to toilet, so asked Rob where the toilet was, he told me and I set off to find it, not far he said, felt like miles to me!  It was good that Emily had got through to the competition and for her to have the experience, but I hope we don't have to do it too often.  The class she goes to is for recreational gymnastics as we did not want the pressure of competitions and she just wants some fun and exercise.  The competition was an internal competition organised by a few of the sports centres in the area.  Emily keeps saying it was an international competition, just a bit of a difference there!

Along with this hectic weekend I have been feeling generally useless and like I should be doing more, being more productive, but I don't have the time or energy, doesn't stop me feeling like this though.  I stared up a page on facebook  mainly to post links to my blog and share craft pictures, but I have no idea why I feel the need to do these things.  Just need to feel I am doing something I suppose, but are people really interested, probably not.  Like the blog I spend time and energy writing and yes people do read it, thank you for that, but is it really just me having a rant, moan, show off etc?  Is anyone really interested in what I think or do?  Is it beneficial even if no one read it?  Why do I need to promote it?  Once it is written or posted it doesn't really matter how many read it and why do I then have to regularly check how many have read.  As I say whatever I do feels wrong even if its something I want to do.  I also started a conversation on Streetlife to find people with similar interest and issues, but again I am not sure why, its not like I have a lack of things to do.

Last week I spent a lot of time in bed reading as I couldn't manage anything else.  I enjoyed the books I read, but it felt wrong, I should have been doing other things, being more productive, so that of course then takes away some of the enjoyment.  I feel that if I am reading I should at least read something that is of benefit, like the child behaviour books I have lined up or the magazines that show me how to do things, but they all sit unread as that feels like hard work.

I like making and creating things and have so many things to do, but again the effort of starting it feels too much, but then I feel bad for not doing anything and not making a go of anything.  I feel like I should be producing lots of things as I am at home on my own all day, but I need to save my energy for school runs and household chores, even though I do get help with the chores.

I hate that I have to spend 2 to 3 hours a day in bed even on a good day, again that feels so wrong and that I should  be doing something constructive with my time.  I have my quilting class on Friday and want to do some more on the quilt, I haven't done any since the last class I went to in January and I so want to get it finished and move on to the other ideas I have, but by the time I am all set up it will be time to stop.  I haven't picked up any knitting in ages, have many works in progress, but never seem to finish them so it all feels a waste of time.

I have many card ideas I want to make, but again the effort of getting things out and starting feels too much.  There isn't room to leave things out and about and just do a little as I fancy.  Again so many ideas, but not enough time and energy and then I end up rushing at the last minute to get something made for a specific date.  I used to make and sell cards and feel that I should be able to do this, but that was when I had all day on my own, no Emily to sort out and school runs etc and even though she is out of the house most of the day when she is in it is energy intensive for me and I need to be able to manage that, so can't use my energy in other ways.  It is so frustrating.

I spend quite a bit of time on Facebook, but get frustrated with people having a social life and holidays etc, to me they are very difficult, also the expense and family commitments prevent these.  Actually I am not really a sociable person, but that because it requires a lot of effort from a physical point of view and a hearing point of view, so if I do go out I tend to sit there whilst everyone else chatters.  Yesterday Rob spent more time talking to the woman sat the other side of him than to me and he didn't know her!  I have not had an evening out since a theatre trip just before Christmas and again that doesn't really feel like you have been with someone as you are sat in the dark watching something and I get so uncomfortable and tired, again I am not sure I really enjoy it.  Holidays, I would love a foreign holiday, but the hassle and expense mean we don't even try, but it would be nice to see a bit of sun and to give Emily that experience, I feel that my limitations and lack of income have a big impact on Emily and we cannot give her the life and experiences we would like to.  She does many things and certainly does not go without, but its not what I want for her.  But then I sound selfish as there are many people who can't afford what we have.  I think whatever you have whether it be a little or a lot you always want more and of course want the things that are denied for whatever reason.  Emily has spent half the weekend telling me she wants me to get a baby!  Ok where do I go for one of them, the Supermarket?  Joking aside though, this upsets me as I would love another baby, but for several reasons can't have one, but how do you tell that to an 8 year old.  There are many things I can't do, but sometimes I really push myself and can do them a bit, so how do explain the difference between this and really can't?  Or no you can't have a biscuit now, but another time you can have a biscuit?

Another thing that came up on Facebook was a reminder of the changes to the DLA benefit.  It is changing to a benefit called PIP and many of us that currently get the higher rate of mobility payment will no longer get it as the criteria has changed, so not only will we be worse off we will also lose our Motabilty cars, so bang goes our tiny bit of independence.  There is a petition going to stop this form happening, but I doubt it will have much impact and won't get as many supporters as the reinstate Jeremy Clarkson campaign, just shows where the countries priorities lie!

Well I must stop now I am feeling really awful and have more than used my energy quota typing this, was it worth it?  I have no idea?  Nothing feels right.

Mother's Day makes

Here are the cards I made for Mother's Day, using patterns from Embroidery on Paper for Every Occasion.  I really enjoyed making them and was very pleased how they turned out and the recipients liked them too.

I also made this picture for my Mum using buttons and mounted in an Ikea box frame.

My Mum had an unexpected Mother's Day present getting her plaster removed on Friday, only 5 weeks after breaking her ankle.  She got to have her first bath on Mother's Day morning, bliss!

It was a day of mixed emotions as both my Mum and Mum in Law have lost their Mum's since last Mother's Day.  We visited the garden of remembrance to visit my grandparents and met up with my Auntie and Uncle who were also visiting their son, my cousin, no mother should have to lose a child, but many do and I can't begin to imagine how painful Mother's Day must be for them.  I must go and kiss my 'baby' goodnight now.

Tractor and a Rugby Ball

This tractor is using a pattern from Stitching Cards, its actually a road roller, but I thought doing it in green and black it looks like a tractor.

This rugby themed card is made using a pattern from Craftsuprint.  I had to cut the aperture myself, which was quite fiddly, but I loved doing the iris folded pattern and have bought several Iris folding cards from Dee Craft.  The pitch is a template that I had and the backing paper is from Craftville.

I was pleased with the way they both turned out, hope the recipients liked them too.  its hard to know what to make for boys.

Meet Ros

Ros is a fellow ME sufferer and has kindly written this about how she expresses her creativity which help her cope with the ME.

I have been writing poems for a while but in recent years have turned to writing about M.E. and people with other chronic illnesses . 
I wanted to express how I and other feel. I wanted to increase awareness and understanding of how it affects our lives and at the same time raise funds for Invest in ME http://www.investinme.org/So I have written a book of poems which is called 'My A-Z of M.E.: 50 poems about living with  (Myalgic Encephalomyelitis)'It's available from Amazon around the world in paperback and kindle version. Here's the link for the UK http://www.amazon.co.uk/My--Z-M-E-Myalgic-Encephalomyelitis/dp/1492735116/ref=sr_1_1?ie=UTF8&qid=1425727432&sr=8-1&keywords=my+a-z+of+m.eHere's my poem A-Z of M.E.   

 I have a blog where I write around my poems and current events
http://roslemarchand.blogspot.fr/
 
I also have a face book page here
https://www.facebook.com/pages/My-A-Z-of-ME/1403270009902127
 
I like it when I have feed back from others who suffer the same and makes me feel that it's all worthwhile. It can be emotionally difficult to read my poems, even for myself. Still I try to express true feelings and emotions, no matter how hard. This way I hopefully show the reality of living with a chronic long term illness like M.E.  
 
Ros Lemarchand
Age 59
Ill with M.E. since 2002
Now living in France

Meet Teresa aka Isla's Attic

Its a while since I did a meet post, it's nice to find out about other peoples skills and interests. 

Here is Teresa, my sister in law and her beautiful personalised artwork.

What is your craft?

 Personalised artwork made to order for any occasion. The majority of my work is newborn and christening gifts.

How did you get started and when?

I first saw something similar given as a gift years ago at a christening. I thought it was beautiful. 

A friend’s son's 1st Birthday was approaching and I wanted to give a gift that was unique, without being too expensive. I thought back to the artwork I had seen and decided to have a go at making one myself. 

It was all very trial and error, and looking back was probably not one of my greatest creations, but it was loved by my friend, and all of her friends were asking where she had got it from. 

I made a couple more for gifts for my friend’s children, and each time I would get lovely comments and my friends would suggest making them to order. I brushed off the idea as they were quite time consuming and working full time (as a Dental Nurse) I didn't really have the time needed to make them on a regular basis. 

It wasn't until I had my daughter that I decided to bite the bullet. My work couldn't offer me as many hours as I hoped for after maternity and with an extra mouth to feed and more time on my hands I decided I had nothing much to lose! A girly night with my cousin Lizi in August 2013 discussing ideas and names for my new venture and 'Isla's Attic' was born!! 

 Do you have a business name?  What is it and how did you choose it?

'Isla's Attic'. I wanted something that sounded homely and feminine with a catchy ring to it. My name (Teresa) didn't really sound catchy enough but lots of ideas I had which weren't of a personal nature such as 'Buttons & Bows' were already in multiple existence on Facebook, where I was setting up my page. I liked the idea of using my daughter’s name so my cousin and I went through lots of various names which included her name. After suggesting Isla's Attic I checked on Facebook to see if there were many pages of that name already. There was only one at that time, and it was only a small page with not many 'likes' so that was that! Decision made!

Teresa and Isla

What is your favourite part of your craft?

Seeing the finished result at the end and taking photos to send my customer!

What is your least favourite part?

Probably on the odd occasion that I have made a mistake and have to start all over again!!

Do you have a favourite thing that you make?  Do you have a picture of it?

I think I would have to say my single letter pictures in a girly vintage floral theme. 

Do you have a website or Facebook page?  If so what is the URL?

 www.facebook.com/islasattic15

Do you sell your makes?  If so, how and where?

 I sell to friends and family quite a lot but I also sell on my Facebook page. 

What is your favourite craft product?

I don't know if I would class it as my favourite, but I could not live without my glue gun! Oh and doublesided sticky tape!

One of my favourite things I would say are tiny self adhesive gems and pearls. I use them on almost everything and they add a lovely touch of sparkle and glamour to my pictures. 

 What is your favourite craft supplier?

Despite not being the cheapest, I would have to say Hobbycraft as I always seem to be able to find what I'm looking for. Also, Ikea, as it’s where I buy all my frames from. Without Ikea the price of my artwork would be much greater as the main part of the cost is in the frame. 

Personal Details

Name

Teresa Braybrook

Age

31

Location

Sheffield

Teresa cut the words and provided the frame for this picture and Emily and I did the papers to personalise it to match her room.

And one of Teresa's lovely button pictures that Rob bought for me.

Not Enough Beans

I found this explanation of ME energy very good and easy to understand, http://sweetbriarsisters.com/blog/cfs-awareness-understanding-crashes/.  I have pasted the full article here;

How To Understand CFS Crashes in 5 Minutes or Less

If you have a friend with Chronic Fatigue Syndrome you’ve, no doubt, heard about how she’ll crash after an eventful day.  But hearing about such a thing and understanding it are two very different things.  What amount of activity is ok and what isn’t?  Does she crash all the time or only every once in a while?  How can you make sure that you aren’t the cause of one of her crashes?

The answers aren’t always simple, but it can help to understand a little more of what’s going on.  I created the following image to explain what it feels like.  It’s not based on science (though there are studies showing  what’s going on, but they are way harder to understand than my cute little pictures!), just based on my life.  For those of you who ever wondered what my life is like- here it is as best as I know how to describe it.  I do these calculations every single day.

It is so hard for people even those of us with ME to understand how to make best use of our energy and why we get payback for what we do.  Also to explain why we can do some things if it is worth the effort, although its not always possible and varies on a daily basis.

It makes sense explain this way, its a bit like getting a loan you can live of that money for a bit, but then it runs out and if you keep borrowing then you will end up in big trouble at the end of the day.  If you keep borrowing the effects just last longer and longer and eventually there is nothing to borrow from and an awful lot to payback.  

Everyday life can easily use up all the beans and you can't just go out and buy more as you need beans to do that.  Of course every day is different and the number of beans varies as does the demands on your beans and there is nothing for an unexpected event like a visitor, a child's tantrum or an emergency which can leave you borrowing well into next week!

Of course this still doesn't make life any easier and the people who need to understand what happens to us probably won't be reading this as they are not interested or think they know already.

Wouldn't it be easy if the solution was just to eat more beans!

ME and Food

This article popped up on my facebook feed this morning, written by Esther Rantzen who has a daughter with ME, who now thinks she may have Coeliac not ME as she has found a gluten free diet has made her feel better.  This is possible, but many of us with ME have food intolerances.  A relative earlier in the week told me she has had ME symptoms for a few weeks and has been diagnosed with a vitamin D deficiency and needs to take supplements for life.  This does start to beg the question of how many cases of ME are misdiagnosed leading to may years of needless suffering.  There doesn't seem to be a standard list of things to rule out before you have a diagnosis of ME.

I have many food intolerances, I have been tested for allergies which all came back clear, but intolerances don't show up on those tests.  When I thought back I did have Vit D prescribed for 3 months in 2013, but that was to correct low calcium.  I haven't had my levels tested then, was just told to return if I felt tired, yeah right!!  Should there be certain things that we should have regularly tested?  I was also given at that time Iron supplements as I was slightly anaemic, but again have not been tested since and the supplement were only for a short time on the assumption that the imbalance would correct itself.  I take a multi vitamin supplement un-prescribed as I know that my diet is not that well balanced due to the intolerances.  Again it feels like because of the ME diagnosis even things that do show up abnormal do not get monitored.  My GP says it is not worth the trauma of the blood test, hmmmm I think that is a poor excuse I am not a child and have been through much worse things than a blood test!  But the tests do cost money and of course the time of the person who takes the blood etc and the NHS will cut back wherever possible.

By my own process of elimination and some very obvious reactions I have found I am intolerant to gluten/wheat not sure which, dairy (lactose), refined sugar, yeast, caffeine, alcohol, fish and Quorn.  This makes creating a meal quite difficult and eating out a nightmare.  There are many products now that cater for gluten and lactose intolerance, but they often contain other things I can't have like the sugar or yeast.  I find lots of nice looking recipes, but again they often contain something I can't have or unusual ingredients that I can't buy or take too much preparation.  On top of the food intolerances I can't prepare and cook a meal, so most of our meals are things that can either be done on advance, or quickly or that just need putting in the oven like jacket potatoes.  Meal times get pretty boring.  I store all the yummy looking recipes on my Pinterest- Gluten free page but have only tried a handful.  Last night I wanted to try sweet potato and apple hashbrowns, but as it required the potatoes and apples to be peeled and grated then soaked in advance I had to find something else instead.  As it happened my husband was late home and then had to go out again so needed to be something I could manage most of myself.

My daughter decided that she wanted fish tonight. She loves fish, but I can't ouch it as it makes me sick!  I like fish too and do miss it.  So when they are having nice fresh fish tonight I will be having a gluten free Ham and Cheese crisp bake, still not ideal as it contains cheese and cream and it is processed food.  They do taste really nice, but have to be added to my don't eat list as I do react to the dairy, but its less of a reaction than the fish or gluten would be.  I was told by a dietician that some cheeses are lower in lactose than others and can be tolerated.  I do find I can tolerate small amounts of cheese, but know when I have had enough.  I can't tolerate milk or cream, but again sometimes have to put up with the reaction as there is no alternative.  At home I have soya milk and goat's butter and lactose free cheese and cream.  I actually prefer the taste of these, I never liked, butter, cream or milk anyway.  Luckily I drink my tea without milk, but do have milk on my cereal so being away from home I have to either take my own milk which isn't always practical or have a bit of milk, that is assuming there is a gluten free cereal, toast is out of course.  Its not a dilemma I have too often as I am not away from home much or I take my own things to self cater even when visiting relatives.

Last week I managed to make my stomach symptoms much worse by eating Gluten Free Coconut Macaroons.  They are delicious and I got a couple of packets on a special offer and felt I deserved a treat.  I only had one a day, but ended up constipated, stomach pains and with thrush due to the sugar.  Sugar also gives me bad indigestion.  I take Omeprazole daily for indigestion which if I avoid sugar is enough to keep it under control, but if I have sugar its not enough to keep it under control and I have to take other indigestion remedies on top.  So much for giving myself a treat, another thing to add to the don't buy list.  I got some dairy free chocolate buttons, but I won't be eating them now due to the sugar.

Bread is another difficult area.  Many places now make gluten free bread, which is like cardboard, but ok if toasted and covered in butter, but of course bread contains yeast.  If I am out I have to have the manufactured bread and hope that I don't react too badly to the yeast, its usually ok if I only have one lot, but if I had it a few days in a row I would suffer.  I have found a good brand of gluten free, yeast free bread mixes which are quick and easy to make and taste halfway decent, but I still have to get my daughter to help to mix them!  They are called Helen's, I buy mine online from this link, but have seen them in Asda.  There is also a pastry mix which is quite good, but I didn't like the scone mix.  The seeded bread is the nicest one and I have added banana to it which is very tasty and good use for over ripe bananas without too much messing about.

Helen's also does some linseed mixes which are nice on cereal or in breads, just need to check the ingredients as some contain sugar and they are packed in a non gluten free area.  I don't really worry about cross contamination as I don't think that I am that sensitive, but realise that some people are.  At home I sue the same toaster etc for normal bread and my own and I handle gluten products for my family.  I do find that if I handle ordinary flour I get very itchy hands.

Did anyone watch Great British Bake Off last night, I was watching with great interest the Quinoa flour pistachio cake, but apparently it tasted vile!!  Gluten free baking is a lot of trail and error, but some gluten free cakes can be delicious, especially if there is also a way of sweetening them naturally.

I made the mistake of being tempted by a Mrs Crimbles muffin and sponge bake mix as it has tasty looking bakewell tart on it and it was reduced in price, but as with most of the Mrs Crimbles products it is high in sugar, it has more sugar in it that flours!  So again I don't think I will be making it after all, I need to check the ingredients list before I buy.  As I do much of my shopping online the information isn't always there, or if I am in a shop I need to get out quick so don't check properly!

As an alternative to making my own bread I do buy Gluten free wraps, but sadly these still contain a small amount of yeast, but not in the same way as other bread products. Warburtons taste delicious, but are very expensive at 87p per wrap and they are often out of stock.  Bfree make a more affordable wrap, but nowhere near as tasty, but I usually get these as they are half the price.  I occasionally buy Gluten free crumpets, but as they contain yeast and sugar I can't have them often, they taste nothing like ordinary crumpets, but again toasted with goat butter they are ok.  Some gluten free pitta breads are also ok, but again contain yeast.  I got some gluten free naan yesterday, which doesn't contain yeast, but not tried them yet.  All these products have sugar low down on the list, but that seems to be ok, many things have sugar in them that we just don't realise and its almost impossible to avoid altogether I just have to be careful the total intake doesn't mount up as it easily can without realising.  Its so difficult getting a balance as to truly know what I am eating I need to make things myself and that isn't possible due to my ME.  Its the same with the yeast I can have some but it's the build up or large amounts that cause problems.

I don't think my ME is caused by an intolerance, but intolerances are a big part of the condition and can make you feel really ill, often without realising what you have eaten.  I reacted badly to Condensed Mushroom soup, which I knew contained milk, but also contains wheat.  At Christmas I was eating Pringles (crisps), and I reacted to them, I now discover they have wheat and barley in them.

Quorn is a strange one, but again make me sick.  I think its because it is made from mushroom protein and is fermented which creates yeast.  I do have to be careful not to eat too many mushrooms too as there is some link with fungi and yeast.

As well as having the intolerances I have to be careful not to over eat as this leads to my system just giving up and the food goes straight through!

If I stick rigidly to the gluten free, dairy free, fish free, yeast free, sugar free, caffeine free, alcohol free, quorn free diet I can keep the stomach symptoms at bay, but it has little noticeable effect of my other symptoms.

A new diet that is becoming popular is the Paleo diet or caveman diet which is gluten free, dairy free, refined sugar free, alcohol free and I have seen some great recipes, but again they take time and energy to prepare.

In Leeds where I live we now have a great Gluten Free Cafe 2 Oxford Place they have delicious food and can cater for dairy free too, but its still a rare treat as I have to make some compromises to eat there.

So what shall I have for my exciting lunch today?