Sometimes it's the little things......

The Little Things!!

Have you ever thought about the little things that are sent to try us with AS. Sometimes they can feel worse than the big things…

For example, like me you have a fused neck, so there is little movement….you go to a party, social event of some kind, and you are handed a long thin glass, or a champagne flute. You know that feeling… you know there is no way you can drink more than a little drop out the top of the glass as you can’t move your head back far enough to be able to drink much of it. So - do you say something, nurse the one drink, or just quietly try to figure out how you can change it into a glass with a wider top?

Right then, that’s the drink covered; you wander over to sit down and low and behold, but the seating is all nice and low, you know the kind I mean, where you need a crane to get you back out of it, either that or slide off it to your knees, so you can get something to hang onto to haul yourself up with. The same way when you spend a night in a hotel or with friends and find the bed is low to the ground so you have the same problem……So again what do you do???? You can’t stand around for too long, but if you sit down it will be a major exercise to get upright again, or do you just end up leaving early…..

Of course before you get into the house / hotel, you may have steps to contend with. There are lots of tenement flats in Edinburgh, and many of them have no lifts and the buildings are so old the stairs are likely to be worn and uneven, oh joy!! One step at a time while clutching the handrail and basically pulling yourself up. You arrive hot and bothered and sounding like you need an immediate oxygen mask!!

Alternatively, in some "trendy" new properties with internal staircases you may find stairs with no handrails, or curved with narrow steps, not sure which is worse.

So go back a stage - you are getting ready to go for a night out - what to wear???? I can no longer wear dresses with being as bent as I am; I end up with the back of the dress considerably shorter than the front - not a good look! So separates it is, bottom half is ok, problem is with the top - and the bent body. I have to buy a bigger size to accommodate the bend, the same problem re shorter back and longer front, but it is easier to camouflage with a top. However with getting a bigger size there is always the chance the neck / shoulders will be too big.

Blouses are better with a yoke back with a pleat so it will hang better with the additional material, but not always easy to find. Also if there is too much fullness at the front and no yoke at the back, then the back is accentuated with the tightness of the garment and all the loose material is hanging at the front. It’s a fine balancing act. Then the neck line………...if it is too high it strangles, I can no longer wear a polo neck (turtle neck!), and of course the opposite is also a problem too low and suddenly you realise you are exposing more than you intended!! The end result is that many clothes are bought simply because they are appropriate for the shape rather than because you really like them, and if you try something on and it fits - well it will do!!  So many days I set out for a shopping trip, and end up with a continuing cry of too long, too short, too low, too high, too straight……………then the ensuing depression when I can find nothing suitable and am reminded that I have such an awkward shaped body.

So thinking about all that, just a selection of the everyday problems, is it any wonder that my social life is non-existent!!

Right then, into bed, with TV, laptop, book and glass of something, so much easier and more comfy, not as much fun though………………………….

Guilt

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 wandering 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 remember, 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…….

You know what it’s like when you have one of those days…

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 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 with 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…………….

We never learn do we????

I had a night from hell last night, even the cat took one look at me and snuggled - sure sign he knows something is up.

I had been out for a few hours earlier in the day, really enjoyed getting out even though it was only for shopping,but also got a new pair of fab trainers at half price. They have really bouncy soles and so absorb all the shock from walking in urban areas, so should suit me! However I felt totally exhausted when I got home, felt ill as I was so tired. tried to stay  up and about so I would have a good nights sleep, but gave up and went to bed around 6.30. OH has to be up at 8 for his work, so had a terrible job staying awake to make sure he woke up, so when he left at 9, I just passed out. I had had no dinner as not hungry and couldn't be bothered, yet I woke up at back of 11 with throat and mouth full of acid. My hiatus hernia was just reminding me it was still there. So I jump out of bed, rush to get some cold water to drink and drink to clear it, then made cuppa to take back to bed, and of course must then stay upright. I read for a while, but eyes kept closing, but then I would wake again as sitting, thus set the pattern for the rest of the night till around 4-5. I decided then I had to try and lie down, I did and eventually fell asleep, only to be woken up by mum phoning at 8 as I usually phone her then so she wandered why I hadn't! She was busy hanging out washing as such a nice sunny day.

Now this is the reason for my title - why do I insist on feeling lazy or guilty or whatever the hell it is, when I hear that others are up and working! I feel I too must get up, strip bed, and half straight into the machine. Had a rest as I felt very nauseous, then made up fresh bed, with cats help !!, had to get dressed of course, to go out and put washing line up, then hang first load, and put second load in the machine. So then looked for any other washing I had, may as well make use of weather and line being out.

I just could not relax and try to get a bit more sleep had to be up to be seen that I was doing my chores etc etc I am the one that keeps telling others  to be kind to themselves and pace themselves and not do too much, wish I would listen to myself !

Well its done now, load 3 in machine, 4 organised and ready, feel like I am sleep walking, cannot eat anything and feel sick, but, my reasoning is, I would be feeling the same if I stayed in bed but would have the work still to do..... In fairness to myself, I know a big part is that we get so few good days, feel I must take advantage as if washing left till tomorrow it might be raining.....honest