Steps.....

Today was Emily's school year 6 leavers service in church.  Only 3 years and it will be her turn!  Time moves on so fast and I feel like I have been left behind as I am so stuck with this stupid illness.  I try to move on and be happy and take pleasure from things, but the illness comes along too.

I doesn't seem that long since I was 11 and moving to high school, we didn't get such an amazing send off and celebrations like they do now, it just happened. time seems to run away with us.

In church we sang one more step along the world I go, a song we had at our wedding and Emily's christening, I'm having it at my funeral too!  It always make me think of the good times and the bad, we are constantly moving along and things are changing even if they aren't as big as moving to high school.  We mark large steps the life events, but we don't notice the little steps we take each day.  For me today the steps I had to take up to the church were slow and painful and I returned home in agony and had to go and lie down.  I don't feel good that all I could do was go to the service, but was my achievement any less than those children leaving for high school?  I hope they have nicer memories of it than me of course.

When I moved to high school that was the beginning of my health problems and my progress was very slow at times, but things did still move on.  I didn't go through high school like my peers and go on to do degrees and get good jobs etc, but life did still move on and I did what I could within ,my limitations.  Instead of being proud though I feel ashamed as I didn't do what normal people were doing and didn't get the education that they got, even years later when I got a Masters degree it felt like a failure not a success as I was older and was too ill by then to get a job.

Each day I feel ashamed of what I manage to do, to me it's usually too much, but in the grand scheme of things is not much.  This week I have made 2 cards, but I feel I should have done more.  I feel guilty because I didn't make Emily's teacher a gift (Emily made one and didn't want me to), but it still feels wrong and I might still make it as it's something I want to do, but even then I won't be happy with it.  Many of the big steps in my life have been difficult and I sometimes wonder if that puts me off making the little steps as I am afraid of failure and not doing things means I can't fail, but then I feel bad for not trying.  On the other hand each day feels like a big struggle just to manage the daily routine without fitting in other things as well.

At the moment we are taking quite a big step by having building work done, we have wanted to do it for 8 years but always put it off due to cost and stress involved, but when we inherited some money last year we decided to go for it.  It should be a happy time watching it being done and planning how it will be decorated and furnished, but I am finding it stressful and worry about the cost and getting the work done after the builders finish.  I am lucky that the builders are great and aren't intruding on my life and routine and are very happy and helpful. So why do I feel guilty for having the work done, ashamed that we can afford to do it, worried that we are showing off or being unfair to those who are worse off.  one of the reasons we are having the building done is because we felt we needed to live up to expectations and improve our house as we can't afford to move.  It will be great to have more space, but it's not essential and we could just have got rid of a load of junk instead!!  We are planning it as a room for Emily so that she can have her own space as she grows up, but then it feels like we are spoiling her and not making her realise that you can't have everything.

Then I feel guilty for the things I can do as there are many people worse off than me, much sicker than me and less fortunate than me.  My default setting seems to be guilt.

I have had a bad week thanks to someone's insensitivity which made me feel useless and like I spoil things for my family too.  When I get upset I start going through all my regrets and limitations and feel worse than ever and that I am not a good wife or mother.  My pain has been really bad, I don't know if this is linked to the emotional stuff, or possibly when I feel bad about myself I try to do more to stop the thinking and to try and prove I can do things.  The emotions are draining and I have not been sleeping, so all in all a bad week.  I need to put it behind me and look for the little the things, the good things, the things I can do.  I also started feeling even more guilty about spending money as we have a lot to pay out for and it looks like I will lose my DLA sooner than thought as the changeover to PIP has been brought forward.  Losing the DLA means I lose my Motability car and my Blue Badge which both give my my little bit of independence, even if it is only that I can take Emily to school, go to the Drs and collect my own prescriptions, it's the little things that count and make me feel part way human and useful.

Mind you maybe that is not a bad thing sometimes, today I felt really ill, but still had to collect Emily from school, I was in a lot of pain and my concentration was not great and I managed to hit a sign in the school car park, luckily no damage to the car, just my pride!

Yesterday I took another big step for me, I decided to try and make myself feel a bit brighter and  to make most of the nice weather and go on my mobility scooter to fetch Emily from school and got to the local library. I lost count of the number of people who took the mickey, stared at me or deliberately got in the way and then when we got to the library for a book I had checked online before going the book wasn't there. I asked at the counter and she said it was returned to another branch and they have lost it, so I said yes but it says it is available at this branch, that's right she said because it is our copy and was returned to another branch!!! She has reserved another copy for me, but that means I will have to pay for it which was why I had checked if it was at local branch before going. I ended fed up, annoyed and in pain, not to mention insulted and wondering why I bother making an effort to do things.

So it's back to little steps, well they are today as the pain does not allow big steps, I feel like I am shuffling along like a little old lady, which according to my daughter I am!  Think we are all feeling old this week as we mark the passing of another year, Emily keeps saying time is going too fast and she should not be this old, she is 8, but then it's only another 8 years until she can leave school and make her own way in the world.

Apparently this week they added a leap second into a day as the world is turning slower, doesn't feel like it to me! I keep saying I am sensitive to movement and it is the turning of the earth that makes me feel dizzy all the time!  Well it moves at 1,000 miles an hour that makes me dizzy thinking about it.

Well time for some little steps to the kitchen to make a cup of tea, that is one thing I always appreciate.

One more step along the world I go,
One more step along the world I go;
From the old things to the new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

Round the corners of the world I turn,
More and more about the world I learn;
All the new things that I see
You'll be looking at along with me.
And it's from the old I travel to the new;
Keep me travelling along with you.

As I travel through the bad and good,
Keep me travelling the way I should.
Where I see no way to go,
You'll be telling me the way, I know.
And it's from the old I travel to the new;
Keep me travelling along with you.

Give me courage when the world is rough,
Keep me loving though the world is tough;
Leap and sing in all I do,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

You are older than the world can be,
You are younger than the life in me;
Ever old and ever new,
Keep me travelling along with you:
And it's from the old I travel to the new;
Keep me travelling along with you.

Please don't judge me

                         

New Toys!

Its nice to drive and noticibly smaller than old one so easier to manoeuvre.  It has lots of gadgets that I am sure I won't use, I need all my concentration for driving not looking at screens and pressing buttons.  The most disconcerting thing is it has no handbrake!!  Its very quiet, we had got used to a diesel and this being petrol is quieter and hopefully a bit cheaper to run.

Emily loves it, she can see out better as it does not have dark windows, they were an expensive option.  She is disappointed as we are not allowed to stick anything on it, she wanted to make it into a ladybird, not only with spots, but with a black line down the middle!!

Apparently the car can park itself, I have yet to try that and will take some convincing.  And for those of you that drive into brick walls this car won't let you!!  I am not planning on testing that one.

I always get a bit sad changing cars though as you get used to them, they become part of the family and share memorable trips, but its also cool to have something shiny new.  If it weren't for Motability we would not be able to have a brand new car so this will be the last.

My other new toy is my washing machine

That is also very quiet, except when it finishes when it plays a rather loud jingle, but it then switches off so its ok, I could not cope if it did it every few minutes until you got to switch it off.  I decided to have a dryer option too as sometimes its handy if you need something or if weather is poor and washing takes for ever to hang and dry and also if things get wet, which Emily has a habit of doing with her doll that cries and wees on everything!

Well I think it will be beans on toast for us for a while now!!

Finally an unexpected newbie this week, we have 2 baby fishes in the tank only noticed them last night, its all happening round here.

Out with the old in with the new.

Its a week of new starts this week.  Emily returned to school today, in her new shoes (thank you grandma) and new cardigan ("it's nice a fluffy mummy"). She starts her first year in Key stage 2 and with a teacher new to the school and to teaching.  The children have spent time with her and like her. After an unsettled year last year a new start feels good.  She started a gymnastics class last night which she enjoyed and will be a good outlet for her energy and hopefully will stop her asking me to help her do things as she will learn to do them properly.

Tomorrow we say goodbye to our car, it has served us faithfully for the last 3 years.  I have a motability contract at the moment so get to change car after 3 years, but this will end when the new PIP benefit comes in to replace DLA as I won't qualify for the highest mobility component and therefore will not be eligible for motability, but I will have the option to buy the car.  This will happen next year or the year after so we will know by then if we like the car and want to keep it.

Also new this week is a washing machine.  The one I had was awful and despite only having it for 3 years it was time for a new one.  We have got LG F1496AD Washer Dryer which had good reviews. So far so good, but time will tell as we are still working out the programmes and not given it much of a test yet, the drying is rather slow, but won't use it that much.

After a very hectic summer during which we have had school holidays, two deaths and funerals, holidays and breaks and a very unhappy, unsettled Emily, I need to slow down a bit.  I am trying to get into a new routine and be more relaxed (hahaha).  Firstly I plan to spend less time online; Facebook and time wasting games use time and energy that I don't have.  I am taking a complete break from Facebook to avoid getting hooked into peoples dramas and looking at endless projects.  I have unsubscribed from many of my mailing lists as again it took up a lot of time looking at things and just depressed me as I was not able to make the items or afford the offers etc.  My Pinterest activity and blog activity will show on Facebook even though I am not actively using Facebook. I have so many unfinished projects I don't really need more ideas and aim to use the time finishing things, well that's the idea anyway!  I have just started an Elsa doll, which is quite simple so I can do without much effort.  I have several cards to make, but need to concentrate more when doing those so not done much recently, have one that needs to be done soon.  I also still have my waistcoat to finish and another top to start, I did start it in April, but it went wrong and not had chance to look at it since, the time from end of May has just passed in a blur.

I do really need to rest up a lot as the holidays have been hard, but as ever life does not stop to allow me to catch up.  I am waiting for the boiler service this morning so can't go and lie down and then later I am having my hair coloured which really knocks me up.  Its difficult for me to take care of my own appearance I am unable to wash and style my own hair so have people who do this for me.  I rarely wear make up or dress up as the effort is too much and would impact on whatever we were going to and I also have Emily to get ready if we are going out so I do the bare minimum for me.  This is the main reason I keep having my hair coloured despite the consequences, I would feel very scruffy if I didn't and would be rather grey.  The main thing is that it makes me very dizzy and causes me neck and back pain from sitting and holding head up and having my head moved about.  I know I will regret it tomorrow, but it will look nice and do look forward to looking a bit better.  I will probably end up in bed much of tomorrow :-( is it really worth it?

Tomorrow I should have a less hectic day, except that it is cleaning day so is very noisy and my cleaner likes to talk to me, whereas I just want to be left alone.  I find it difficult having people in the house and in my space, but I need them.  In October my cleaner/PA is away for 3 weeks and I have no back up so things will be very chaotic then.  Many things will get left and other things I will have to try and do as and when.  But it will mean a messy dirty house, unmade beds, creased clothes etc.  And then when she gets back it is half term, agggghhhh.

Boiler service man on his way now.

Thursday I have a meeting with children's services for support with Emily's behaviour.  I sometimes wonder if having these meetings and appointments really help as they wear me out so I don't have time, energy and patience for Emily!  We have had a really hectic holiday, but yet I feel like I haven't done anything, its madness.  We really need some quiet family time, but often when we do get that I feel too ill to do anything and end up in bed, its very frustrating for all of us and tempers get rather frayed.

On Friday its more messing with my head and having haircut, can't manage the colour and cut in the same day.  I wish it wasn't so complicated to get even the simplest of things done.

And that's just this week.  I feel like flopping into bed and not moving for a week, not much hope of that.  The other thing I really fancy is a nice relaxing foot massage.  Had my physio massage yesterday, but that's not relaxing as its painful and the physio chats away and I had to take Emily yesterday, she never stops talking.

I need to finish now as I am getting too dizzy and my neck is painful, hoping boiler service will be quick then I can go to rest as Emily wants me to scooter to pick her up, which is actually not too bad as I don't have to drive and worry about parking, but I do have to be ready to leave earlier.  I am sure she will have lots to tell me, I need to make the most of the peace and quiet.  Boiler all ok, Thank goodness, don't think I could manage a new one of those, I still think of it as being quite new, but we have had it 13 years, where does the time go?

Here are a few pictures from the school holidays

Benefits

This is a useful link from Action for ME to benefits.  I am worried about transferring to PIP from DLA. I will lose my entitlement to a motability car  and possibly blue badge depending how they assess. Will be stuck without blue badge and will lose the tiny bit of independence that I have eg won't be able to collect own prescription.  We have just ordered our next Motabiltiy car as I still qualify until benefit changes next year, but then we will either have to return car or buy it ourselves.  We were sent information about buying options and they look quite good so that is what we will probably do, but it means that we also have to pay for own insurance, road tax and servicing which are included in Motability, making it a very good deal.

We have ordered a VW Golf Estate which is bit smaller than our current car, so hopefully will make finding a parking space and turning around a little easier.  We hope to get it in August.