Another one of those days

Hello all it’s been another of those days, and I am writing this in an effort to calm down.

It started with me not sleeping well, and being awake from the back of 3 or so, and reading, still awake when OH came in at 6. Had another coffee, cuddled the cat and read some more, then woke up, had been having a lovely dream too….. settled down to read some more and drifted off…till the phone rang. It was mum, and irate, bad tempered mum. She was having problems with her Virgin TV line, and I had to listen to every single little detail of the phones calls made, time spent hanging one, who she spoke to what they said etc etc. Then she had looked out the window and saw a car parked halfway over her driveway, so she phoned the police and was disgusted by their attitude – she knows what they will say, they say the same thing every time, but I had to listen to it all. Then asked if I was OK, in that way which is more of an accusation than a question, I imagine because I was quite quiet. I said I was just a bit sleepy as I had just woken up, so she decided she had better go then so I could get back to sleep….. yes right!

And that was the pattern for the rest of the day, she phoned Skye, got some info then phoned me to tell me about it, as I asked questions, she got all huffy as she hadn’t asked them, also floored me by announcing she is going to get a laptop. OMG my worst nightmare has come true! My mum used a computer many years ago in a job, but it was a company programme, but she tells me over and over about what happened when you pressed such and such a key…..Will we still be speaking when she gets a laptop??

Then she calls to tell me the name of the man from Skye and he is phoning me in an hour to discuss her needs…. Then a while later she phoned to say she had phoned BT and their man was phoning me too to discuss later. So I rushed off to see what was what on line so I had some back ground knowledge of their offers, though trying to make sense of it all was not easy. Well I was at the stage of looking for something I could just throw very hard and smash, head pounding, back aching from being bent over the laptop all day.

Both men called me back and I got what I considered to be relevant information, and called her back to tell her, I forgot briefly who I was speaking to as I told her I said to the BT man that I had not smoked for a few years but could really do with one, now and he said he understood what I meant, luckily she laughed!!

So at last I can relax, no more book got read, no TV watched, no recorded programmes watched, nothing actually done, just sat over the laptop all day. I love my mum dearly, but it is such hard work trying to explain anything to her, she makes up her mind and that’s that. As an example she talked about buying a new TV for the lounge, I said why, and she slowly reminded me she was going to get rid of Virgin, so she would have to change the TV, I in turn, explained to her, that she had an aerial as well as cable, and if she tried using the TV handset she would see it worked. But she says I want my freeview stations, I explained the TV its self has that (we have the same TV). She was still not believing me, and I explained she could chuck her Virgin box away and she would still have the same , maybe a few less stations but she only uses the basic ones. I think she must have gone and tried it as she never mentioned it again, but just an example of the difficulty. I am having a large glass of pear cider at the moment, and for the 1^st time in a long time, could really enjoy a ciggie, but I know I won’t.

It might be an early night, with more pear cider and my book, as I am absolutely knackered.

Oh well, hope there are no nightmares tonight!!! 

Frustration

It is a subject we have discussed often on the AS sites on FB, friends and family and their understanding of AS (Ankylosing Spondylitis), but one that just goes on and on.

I have mentioned in FB and Twitter that I have been having a difficult week, healthwise, difficulty in walking due to pain and stiffness in hips in particular, and I have mentioned this to mum, downplayed quite a lot, and of course OH sees it. 

This morning mum asks how my aches and pains are, I say much the same, she then says even though she has a heavy cold and currently bedridden, we could maybe manage out tomorrow!!! I try to explain that I am having difficulty walking round the flat, and while walking more might well be good for me, I am not happy with the thought of going out and feeling like this outside. Oh she says, what have you been up to be this sore?????

My mother has never ever been able to understand that AS strikes when it strikes, I don’t so anything to cause it to, it isn’t ‘my fault’ it isn’t reacting to anything I have any control over. I can be sore through doing too much, in the same way as we all can, but AS pain is different. It is so difficult trying to explain this yet again without sounding irritated, because then she will be offended. Just like she will tell me to go to my bed and rest and then give me a row when I am up and about, and I have to remind her that too much time in bed is not good as I will stiffen up. Then the next time I haven’t slept well and am tired, she will tell me to get up in case I stiffen up…………

Then, yesterday, OH watching me shuffling around holding onto the wall, does little to help, except carry the cup of coffee, and pop though every half hour to see if I wanted a cuppa. Asks ‘when are you back to the doctor?’ in and exasperated tone. I feel it offends him in some way to see me like that and again feel why do you not understand, you have known me for long enough (20+years). I ask him what he thinks the doc is going to do? He has no idea but thinks I should see him. Again I have to explain, I know what is wrong, I have the painkillers as I have arranged with rheumatologist to get the stronger painkillers to take along with usual ones on occasions like this!

I know I should have more patience, especially as I am aware that so many others have exactly the same issues, but it is so frustrating that no matter what happens with my AS it is initially assumed, a) I have done too much, so my own fault, or b) I am somehow negligent by not rushing off to the doc.

So I shall say, yet again, my favourite word of the moment – BUGGER!!!!!

Liebster Blog Award

Liebster Blog Award

I am amazed and delighted to have been awarded the  Liebster  Blog  Award  by Rosalie at http://tearosesmusings.blogspot.com  Rosalie you have made my day, I cannot tell you how much I appreciate this award xxx I hope everyone who reads this will have a read at Tilting at Windmills, the blog. Rosalie can also be found entertaining us  on Twitter as @tearose68.
                                                                           

The purpose of the Liebster Blog Award is to spread the love from one small blog ( those with under 200 followers ) to other small blogs . This helps to spread awareness and readership.

Liebster ,in German, means  'dearest' and so, in keeping with the Liebster Award  tradition I am going to pass on this award to 5 blogs that I enjoy. Blogs that have inspired me and made me think about the lives of others. Blogs that have entertained me and, I feel, will be of interest to all of you.

To accept the award you must,

1) Link back to the person who gave it and thank them for thinking of you.

2) Post the award to your blog.

3) Give the award to 5 bloggers  ( with less than 200 followers ) that you appreciate and value.

4) Leave a comment on the blogs of the five people you have chosen, to let them know.

And here are the five blogs that I have chosen for the award . It was very difficult as there are so many wonderful blogs and I am sorry that I couldn't give you all an award , but each of these is fabulous for many different reasons.

Tabitca on craft and stuff ( and @Tabitca on Twitter ) Tabitca stuggles with health issues, but entertains with the tales of her 2 lovely cats. She is a fabulous lady who when her life changed so much that she is virtually house bound now, took up crafts, her cards are a work of art, and writing a mystery and suspense series of 3 books. The first 2 have been published on Kindle, the first has been taken on by a publishing house and will be out in paper form soon, the third is in the process of being written. She is an inspiration and shows what you can achieve if you try, despite overwhelming odds.

Meloni on Ankylosing Spondylitis Mom struggles with the same health condition I have, however she is also the mom to 2 girls. She writes her blog in order to share her experiences with others with AS, and to educate those who don’t have it. Well worth a read as it does exactly what she intended it do, as well as being very entertaining.

Penny at Penny’s Points is a lovely lady who has health issues, a cat, a new puppy, strong views on many subjects (@pennyessex on Twitter ). Always interesting, never dull, Penny shares with us her experiences as well as her views on whatever she cares enough about to share.

SamT on Ramblings from the Northern Territories 2 and also exists on Twitter as @SamDescartes. I meet up on a regular basis with Susan (Sam) since we chatted on Twitter, and I have always read her blogs. There can about whatever is current with her, from families, to her wee doggie and various cats, to the trials of working as a teacher, to the trials of being the carer of her mother. Always interesting.

Cynthia on I Am Not Random, But I Do Have Random Thoughts is another lady with health issues, but her blog is just what it says on the packet. You never know what she might be chatting about, or the form it will take.


So, there are, my Top Five Bloggers, the ones I read on a regular basis. It was difficult to choose only 5. I hope some new readers might give them a go and enjoy them as I do.

Rambling

I have not had much to say on my blog for a wee while, so as a start to the New Year, I feel I should make more of an effort.

It can be difficult sometimes to write a blog when all your thoughts are of a negative variety, or you have just really been up to nothing much. However, I would like to take the opportunity to describe one day this week when I was feeling particularly gloomy. I woke that morning, and I just couldn’t be bothered about anything. I felt down, depressed, I was a bit sore, was trying to deal with a new pain and I was worrying about 2 of my close friends on FB who were having a tough time and waiting for news. I didn’t want to just disappear, so simply said I wouldn’t be around much that day, I did describe myself at one point as a torn faced whatever, and this really captures it all.

However, I did not bank on  my FB friends, I received so many lovely messages, offers to sort out the person who might have upset me, people I don’t normally converse with, we are just members of same groups, felt compelled to contact me. It was quiet overwhelming and did reduce me to tears once or twice, that people would take the time to actually cheer me up.

I read an article yesterday by a doctor who was commenting on the fact that despite the bad press given to the likes of FB, until he became ill and housebound, he did not realise how much belonging to FB would change his life. He found lots of people to chat to with common interests as well as support groups for others with his condition. He described how he felt much more fulfilled and as a member of the medical profession, what a wealth of experience, information and knowledge was available to him on FB. He found he learned so much more about his illness and also about the patient / doctor relationship. Yes, you have to try to remember that not everyone will be genuine, real or very nice, but then that is the same in ‘real’ life too.

I used to spend much more time on Twitter, but I have found that on FB I have longer conversations and therefore gotten to know people better, and have formed such wonderful friendships. I still pop back and forth to Twitter all the time as there are people there that I would not want to lose contact with, and want to know what is happening in their lives.

I think this time of year is such a dull dreary time, if you have had a fabulous Christmas/New Year, then you are feeling flat as it is now just back to normal, and of course January is such a long month between salaries, and the debts are becoming real. If, on the other hand, you haven’t had a great time over the holidays, it is just more dark and cold days to survive till Spring arrives, an endless feeling time. Many people like me don’t get out much with the weather, whether it is the cold or bad conditions under foot making walking even more off putting. I have to travel by bus or taxi, so of course buses are daunting as I have to have a min of 3 changes of buses in each direction to get to the shopping centre I prefer to go to, which in cold windy bus stops ……. But if I get a taxi, it costs a fortune, so needs to be considered carefully.

It does feel like hibernation as I appear to be getting out 1 day a week these days, still at least the shops are getting quieter as Christmas and the first flush is off the sales, plus almost everyone is back working now, hear the ‘Grumpy Old Woman sneaking in there??

I cheered myself up in the usual way yesterday by buying (or at least mum buying for me as she saw the ‘look’) as well as some purple undies, obviously not liked by others as they were so reduced in price, and purple….. but also a pink bag. I know, a pink bag you say, but I have several pairs of pink shoes. I like surprising things like pink shoes, again bought for ridiculous prices in sales as not a popular colour.

I don’t really care of it is winter, I will carry my own little bit of fun and lightness with me. I tend to wear a lot of black, purple and grey so pink is perfect, and clashes beautifully with my red hair!!

Well I have rambled on rather a lot, but I would also like to add a list of my current reasons to be grateful, as suggested by one of my Twitter friends:

My online family for caring enough to make contact when I needed it

My pink cashmere hoodie bought for less than half price (will match the bag and shoes!) and is so soft and cosy.

The fact that I can see the changes and additions to my home helping to change it into the home I want, which is nice as I spend so much of my time here!

The days may be dreicht, but there is something very enjoyable and guilt free about curling up with a good book, or DVD when it is dark and nasty outside.

Happy New Year to you all xxx