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.

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