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.

Reality dawns!

I am constantly trying to work out how to have the time and energy for things, in reality I have very little time and energy and use them on things that need to be done to keep every day life ticking over and getting essential rest, so there is very little left for doing the things I would like to do, but complaining about it won't help.  Thursday morning is the time I have the most 'spare' time as I have no commitments and no one coming in to wash my hair or clean and no appointments, but that still only leaves me with 3 hours from dropping Emily at school until I need to be in bed to be able to get up to go and collect her.  I have been getting annoyed with myself for not having the time and space to do bits of craft so used some of this morning clearing the spaces which were just been used as dumping grounds for other stuff, I now have 2 small work spaces, one upstairs and one downstairs, just wonder how long they will stay like that?!

Yesterday I was talking to Emily about helping out at school, I did spellings for an hour a week part of last year, but found it very demanding.  I wanted to help out with the creative time that they have, but realised that I wouldn't be able to do it, me and my ideas!!  then I said what about having an occasional craft group at home with a few friends, another daft idea I struggle when she has one friend to play or just getting her to follow instructions, let alone more of them!  Oh dear, now just need to hope Emily forgets about it or I will have some awkward explaining to do.

Yesterday I read Tickle ME a short collection of anecdotes about a girl with ME and the things she does in her brainfog moments.  Brainfog is a major symptom of ME and can be rather awkward at times and you do learn to laugh at yourself, well its either that or cry!  It is amusing, but also something I could relate to and I am sure all ME sufferers could write similar.  Then I started to read From ME to You, With Love a collection of letters written by people with ME explaining how the illness affects them, there is also a website http://www.frommetoyouwithlove.co.uk 

To be honest its rather depressing, many of the sufferers are in a worse situation than ME, but there are plenty the same or better, the condition varies so much.  This book is being sold to raise awareness and to raise funds for research.  I began to wonder though who would actually want to read it, I had to stop as it was unsettling me, when I was already pretty down.  The idea is to get non sufferers to read and understand the condition, but why would they want to unless the condition of someone close to them has an affect on them.  Many people think they understand or know as much as they need to, although it may not be the reality.  If you have an interest in illness and disease or personal stories then yes you might have a look, but are probably more likely to read about a celebrity with cancer or dementia or the like, its much more interesting.  it also makes me wonder just how interesting my blog is, rambling on about the things I am not able to do and my symptoms.

I started the blog to showcase craft projects and to write about things of interest to others, but fear that often it is just a big moan.  I never expected lots of people to read and know its not of interest to many people, but I don't want to bore people or give an even worse impression of people with ME.  I also wanted it to be a personal record of information and achievements and hope to be able to focus on this more.

I did find noting the positives in each day beneficial, but somehow lost my way.  Perhaps I should make note of today's.  Firstly getting the spaces cleared of junk, getting 2 cards pricked ready to stitch and my gluten free food all came in the shopping, its often not available so I end up with no food!  Today I got GF Pasta, GF pitta , GF Wrap, GF crumpets, GF custard creams, Ham Crispbake and GF Crispbread and for my lactose intolerance Soya Yogurt, Lactose free cheese, Soya Milk and Goat's butter.  I always order more than I need as its never all available, will have to freeze some this time, but at least I have plenty of goodies.  Not had the Ham crispbake or lactose free cheese before so looking forward to those.  It is good that supermarkets are getting better at stocking products for food intolerances and allergies and that the prices are starting to come down.

Finally I managed to change my Physio appointment from Monday to tomorrow morning hoping to get on top of my pain and stiffness a bit, its got worse since it turned colder.  Having that appointment also means I don't have to rush from Physio to 5 ways on Monday morning so gives me more chance of actually getting to 5 ways, I have missed it.