Wednesday, February 20, 2013

Another day in the life of,,,,,,,,,,,,,,,,,,,

Must get organized
and here we are on another Wednesday, well after the last two busy and tiring days today I hope for a more sedate day, well that is the plan anyway, I have a lot of things going on at the moment that I really do need to settle down and work out a timetable so that I can get my days organised better. This is one of the reason,s that I invested in an ipad, as that   will sometimes be easier to use than the laptop, although the laptop will be my first port of call.

anyway any ideas on how to organise my days around the Medication, fatigue, shopping, TV, and facebook then I would be much obliged.

My Morning Coffee
Last night was not a good night more a case of sleep, wake, sleep, wake. well you get the picture, as I am sure most of you have at sometime had the same problem, anyway at 8.00 I take a coffee into the lounge and get the TV on for the breakfast news and log on to the internet to check out my emails and Facebook, while I wait for the carer to arrive.
The carer arrives at about 8.45, another different carer again today, so no idea what has happened to Carol, I think she has probably gone sick or has just got fed up with the company anyway after letting the carer know what needs doing as she does not seem to know what my care plan is and when I gave her the folder she asked what it was ??? No hope really anyway she gets me washed and groomed and then is on her way.

Walking the Dog
Once the carer has left, I get myself some breakfast, and send the morning text to Pauline and then go and get the washing up done, Pauline phones back to say that all is Ok and she is just heading home with Misty after their morning walk, as her sister Fran is coming down to her about 10.00. anyway after I have spoken to Pauline I get dressed as Fran,s husband Colin is taking Fran to Pauline,s and then he is coming round to see me for an hour or so.

Having A Good Old Chat
Colin arrives to me about 10.15 so we have a nice chat and put the country to rights, interspersed with a couple of cups of tea, Colin is Giving up Smoking an is doing well, he is using the electronic cigarettes to help him. anyway Colin stays for about an hour and a half and leaves to go to Pauline,s about 11.45. So that was nice to see him as I do enjoy our chats, and then once he has left I get the washing up done and then get some bacon and egg for lunch.

Now that lunch is over I need to have a good old think about getting my days organised, there are  4 main areas that need to be organised

  1. My Daily Journal
  2. Starting the "Myo Hub Website"
  3. Writing my book (Der-mat-o-myo "What ?")
  4. Updating my website "Myositis in Focus".
These are the activities that I need to get organised around my normal activities of Medical appointments, shopping, Medicine taking, food preparation, etc.

(1) Daily Journal

Writing my Daily jpurnal
I have looked at cutting down the Daily Journal but have decided that I want to carry on with that as it has a worldwide readership and following and I have great fun writing it and also it helps me to look at my daily life with dermatomyositis, at the last count I have followers in 33 country,s Those are ( UK, USA, Canada, Australia, Russia, Germany, France, South Africa, Spain, India, Italy, Mexico, Hungary, Ecuador, Ireland, Malaysia, Norway, Philippines, Belgium, China, New Zealand, Netherlands, Ukraine, Belarus, Slovakia, Taiwan, Poland, Indonesia, Puerto Rico, Finland, Jordan, Brazil, Sweden.)

(2) Myo Hub Website

This is still in the Planning stage as there is going to be a lot more work involved than I first thought, especially with the structure of the site, as it needs to be easy to navigate especially for people with limited mobility with hands, fingers, etc. I am in contact with various disability groups so this project is still ongoing, but I have to look at and adjust  the time scale for this website, so it looks like it will now be sometime towards the middle of the year before it will go online, that will give me time to get the next two projects completed.

(3) Writing My book

My book
This is a project that I started almost a year ago and then stopped for different reasons, I have now got updated software and this is now back on track, I am going to publish it as an e-book and also an ibook, and the idea is that the proceeds will be donated to a Myositis Support group. It is a book titled "Der-mat-o-myo What ?" this is the story of my journey with myositis from the first symptoms in July 2010 through the diagnosis in 2011 and up to the present time, and as usual it will contain Humour and Cartoons this WILL be finished by the end of June.

(4) Myositis in Focus

This is a website that I started about 12 months ago, I have not spent as much time on it as I wanted to so I need to spend more time updating it as it is a website that has a lot of hits and needs some sections to be completed, especially the A to Z of Myositis I think that this will take about 4 hours a week over 3 months to complete to where I want it so  that is one thing that does need the time spent on it. also it needs to have its own stand alone .com web address, as it is running on a weebly web address which is the online web creation site that I use for the website creation.

So there you have it those are my plans for getting organized, all I have to do is make sure that I do, and as I said now that I have arrived into the 21st century with the iphone and ipad it should make things easier as I will be more mobile, even taking Photo,s when out shopping and posting on the internet from the comfort of my wheel chair, so different from my first Mobile Phone which I had in 1983 when I had my Driving School.

So there we go one thing you should all know is that I have finally solved a problem that will change my life for the better, it has been something that has been bothering me all day and to be truthful has affected my life today and not in a good way, however as I said all has been sorted I eventually found that in my fatigued state this morning when I got up after a not very good night i had put my underpants on back to front "Doh"

However that is now all sorted so as it is now 5.40 I need to get this journal posted and then start thinking about dinner, I am making a Gluten free Chicken Korma tonight with some fresh Chicken breast, a Gluten Free Korma cook in Sauce and some Mr Ben,s Gluten Free Whole grain Rice, so until tomorrow I will say Tatty Bye................


  1. Your organization plan sounds great ... Isn't it humbling though to find you've been backward all day!? I think I have gone out on occasion in different coloured socks or shoes (can't remember which.)

  2. I think with this Myositis and all the appointments, Medication etc I needed to get organized, it is not the first time I have found myself wearing the wrong things, the other Sunday when my son Gervase was taking me out shopping I left it late to get ready ( Playing words with friends) on facebook, he arrived and I got in the car before realizing I still had my slippers on LOL.