I am still around

It seems I haven’t used this blog for a while so might have been deleted – testing!



Regret, what do I regret………

Like most people I have regrets, however living with AS means, perhaps, more than most. Can you regret what you could never have done anyway??? Not sure about that one.

The saying is that it is better to regret what you did, as opposed to regretting what you did not do, yet living with AS regret is all about what you weren’t able to do!!

I am finding it difficult to really get a handle on this subject apart from the biggie, – I regret having AS. Yet in some ways not everything about life with AS is negative: it makes you stronger dealing with chronic illness, it makes you a more empathetic to others with illness, and you have to learn patience!!

The only major regret I can think of, is that I regret working on and struggling on as long as I did. If I had been in a position to have given up work many years ago, I might have managed to have a more fulfilling life, and been able to actually enjoy myself more and have a social life with friends.

I feel as if I struggled on too long so that by the time I had to give up work, it was sheer necessity and I was totally burnt out. I had started to really hate my job, and lost my way with friends as I was never able to go out much the last few years. It has taken me since then to  just start to learn that I can relax, that my time is my own, there is no pressure to do whatever I don’t want to and to not care too much what other people think.

Of course, I am now of such an age that nature is taking over as well so on a hiding to nothing.

So my major regret is that I was not able – for all sorts of reasons – to give up work many years ago. So that before I was burnt out, I had time to live and enjoy life, to travel more, but instead all I was doing was struggling from day-to-day to the next simply to work.




Where do I start ……..


Well there is the guilt associated with asking endlessly:

If I had pressed harder for an earlier diagnoses

If I had asked more questions,

If I had demanded more answers,

If I had exercised more.

The endless lists of things I maybe could have done better so I didn’t end up so disabled. I know there is no point, because no one can ever know, from all the research which is possible these days I know we are all different and it is impossible to know how the disease will progress in any one based on how it all started.

There is the guilt because you feel you have held everyone around you back, due to your limitations. In terms of outings, holidays, the fact that you had to struggle so much to work you had no energy left to enjoy yourself, then the fact that you had to give up work early so imposing a financial pressure on top of everything else.

Then there is the guilt when you find yourself wondering how you are going to cope when your elderly mother becomes more frail as you are an only child and no other relatives around to help you, and the guilt because she is worrying about how you will cope too.

There is so much guilt, perhaps that is why the dark cloud of despair and depression visits many of us. We have the good days and we try to use them to the best of our ability so at least when the bad days come you don’t feel guilty for wasting a good day.

However, every now and then I recognise, that by doing that, I end up doing too much on good days, and unable to do anything on bad days. What happened to pleasure, enjoyment –  too guilty thinking about the ironing needing to be done, the dirty kitchen floor……….

Guilty for doing too much, guilty for doing too  little, guilt guilt guilt…….

Yesterday was mothers birthday, so although I was not feeling the best, I made the effort and we met up and went out. I treated the whole day like it was a special day, and made her lead the way go where she wanted, do what she wanted etc. We had intended going for lunch, but in all honesty we were both too tired, so we jumped in the taxi to my flat, to give her her pressies.I had searched and searched on line for the artists name as well as the name of a painting we had both seen in a Cowboy Museum in USA. Eventually managed to get his name and this particular picture is his most famous painting. Could not find
anywhere I could buy a copy however eventually managed to find an article about him which showed the front of a magazine advertising an article about him. I e mailed it to friends who have an art business, and they downloaded it, printed
it out, cleaned it up and framed it, fab.I was also concerned as she had a problem recently when her phone lines were down and I discovered she didn’t use her mobile as she basically found it too small and difficult to read and use, so I bought her one of the simple phones. Only has phone and text
facilities, no camera/Radio etc, plus the buttons are bigger and the text is bigger. The ringer can be set much louder too. So set it all up for her all numbers in etc. OH got her a big box of hand made chocs as she has a really sweet tooth!

I was looking forward to her reaction and I was pleased to see that she was very happy with her gifts. So a good day was had, however we were both extremely tired. She phoned me later to say she had felt very special all day and had thoroughly enjoyed her day and loved her pressies, her best birthday ever, can’t ask for more than that!

I had intended today to have a good long lie and a generally lazy day, and the forecast was for rain. I was so disappointed to find the sun shining when I woke up, as I knew I would then become guilty being lazy. Somehow it is much easier to be lazy on a wet horrible say than a sunny one!

So got up and stripped my bed and took all bedding through and put some of it in the machine to wash, then though I would just keep going and make up the fresh bed. I struggled on my own and even turned the mattress, I was almost done when I noticed heap on the floor- it was the mattress topper! So the bed had to be unmade and then remade…

It was so humid that my hair was plastered to my head and dripping into my eyes and
stinging, clothes sticking to me, so not a good look!!

By this time first load was done so I gathered it all together and put second load on, went out to back garden to find someone had beat me to it and there wasn’t too much space left (communal garden as I live in a flat) however, I got my washing line out
and managed to get a couple of stretches for the bedding, and hung that first load out.

All going quite well, apart from the bed fiasco…

As I had bought some steak for stew yesterday and I knew I had mushrooms and carrots, decided to get started on this, even though I had made a cuppa and was going to have a rest. OH got up to take cough medicine, so I shot off to have a quick hoover (he works nights so sleeps during the day!) Then started on the stew, prepped all veggies and had steak chopped and in flour/ needed seasoning, so collected the salt and pepper. Used the salt then went to use the black pepper when the dispenser broke in half, and course ground black pepper was everywhere, including in my nose as I sneezed and sneezed! Stopped to clear it all away and
brush kitchen floor. Then I noticed there were a few breadcrumbs round the toaster, so decided to wipe it down……emptied the crumb tray, then shook the toaster and I ended up with breadcrumbs everywhere, piles of them!!! So cleared
them all away and brushed the floor and started again on the stew. After I took the full bin liner out of the bin when the top tore, so had to decant some of the rubbish into another liner…..

So, thinks I, I will use slow cooker then I can relax and forget about the stew for a while, unfortunately this means emptying a cupboard to reach the slow cooker, but it will be worth it I decide. So stew started, and then put into slow cooker and all washing up done, and kitchen put to rights. Second load done, take it out and hang it up.

Back in, sit down and have a cuppa, then remember there were a few towels, so thinks as well to put them on.. …..On laptop chatting away when I suddenly realise it is pitch black, check outside and it it torrential rain, Grab bags and off out to collect washing. I am soaked, washing is soaked, have to get the clothes horse out to hang washing on when I discover one pillow case is covered in bird
poo!! Have to wash it again by hand. We have thunder and lightning with some hailstones.

By now I am exhausted and frustrated by all that has gone wrong, so I have cuppa then decide I need to eat, so cook some sausages
with some beans, while I enjoyed eating them – tum not happy to receive them.

Went for shower, washed hair and at least felt clean and fresh again.

Watched a little of a recorded programme on TV, but eventually crawled through to bed, nice clean fresh bed, although I did have to move Milo (cat) so I could get in!

Such a frustrating day, but on a positive note, the chores are done, although the bedding on hanging up in the kitchen! But it
does allow me to have a really lazy day tomorrow!!!!! I am sitting in bed, with a glass of pear cider, laptop, Corrie on box, and good book waiting to be read some more. I am feeling not too bad, all things considered, although watching the clock for pain pill time.

Ever think you should really have stayed in bed as everything you tried to do went wrong…….maybe weekend will be good to
make up for it…………….