So far so good.

Hi to everyone hope you are all having one of your better days today, well didn't get to bed until turned 1.00 am this  morning but slept pretty well only woke once during the night and woke at 7.45 so a decent night,

Now you may ask "Why " did frankie not go to bed until after 1.00 am ?  " What was he up to.  Was he out and up to no good, not very likely, to old for all that , can,t run away fast enough





Could he be out on a hot date ? That again is very unlikely as I have forgotten what to do anyway with my energy levels I would probably fall asleep trying to work out what to do,





No the truth was I went round and spent a very nice evening with my Son Gervase and his lovely wife Leanne, at there house in Southsea, Had a really great evening, also Leanne,s dad (Dave) was there and so we had a good chat, Always used to go round every tuesday until this disease took over, however last night, just for a few hours it was like the Dermatomyositis does not  exist, so hopefully we can make this a regular event again like it used to be. and start to get a little bit of  normality back into my life, as the saying goes " From Little acorns............ "

As those of you who read this blog on a regular basis, I am tapering my Prednisolone down, and last Wednesday went from 20 mg daily down to 15 mg daily, trouble was I lost a lot of energy and felt very lethargic, phoned my GP on the Thursday and she thought that the problem was that we were tapering of to quickly and wrote a prescription for some 1 mg Pred and said to go back to 17 or 18 mg daily and see how that went and then reduce to 15 mg daily from  today, well that seemed to work, and so far today I am doing OK on the 15.mg so next wednesday will drop to 13 mg daily and the Wednesday after to 10 mg daily which is where my Neurologist want,s to get it to. We are staying at 15 mg of Methotrexate weekly.

Don't like this weather we are having at the moment, it is very changeable, one minute the sun is out, the next it is raining, s looks like the decision to stay in today was a good one, and as it happens it is a good thing that I did, as about 3.30 this afternoon there was a knock on the door and my new wheelchair was delivered. so now I will have a bit more freedom to get out and about to the local shops, when I came out of hospital I had a wheelchair on loan from the Red Cross, but it was one that had to be pushed, the one delivered today from the NHS has the large wheels so I can propel myself around to a certain extent and it will make me use my arm muscles, just need to make sure I don't push myself to hard to start with.

Well thats about it for today, Tomorrow it will be down to the shopping centre with Pauline for a couple of hours so it is time to get dinner sorted for this evening and then a few hours of TV and facebook. so until tomorrow, Adios Amigo,s

Autumn Arrives

Think I will stay in Bed

So that is summer over with then, and Autumn is settling in, time to get out the thermal underwear, and find those winter jumpers in the back of the wardrobe. Woke this morning after a half decent nights sleep to the sound of the wind howling up the side of the house, and the rain lashing on the back door. Oh well time to make a coffee and get ready for the carer and then see what to do today, not a very exciting day in store today.

A Happy Doctor

Anyway have a nice coffee and then up for the carer who comes at 8.30 today, she gets me groomed ready for the day so it is now time to get some breakfast  and then phone the doctors surgery to see about the high white blood count that was mentioned yesterday.

Phoned the doctor at 9.30 and there is not a problem, it was that the blood test results from last week showed that the white blood count was high, but it was lower than it has been so Dr is not concerned so all is OK, it is as suspected due to the prednisolone as usual. Again checked with the Dr and we are going to reduce Prednisolone down to 15 mg daily from tomorrow and see how it goes this time.

One of my earlier books

The weather is not really very nice today so can,t even get out for my daily walk around to Tesco, so looks like it will be doing the daily paper crossword and sudoku on line today.
Many people ask how I spend my time, now that I am not as active as I used to be, so I will take this opportunity to briefly run over how I spend my days at home while I am bringing this disease under control, I am a avid genealogist and spend several hours a week researching my family tree, I am in the process of writing another book on our family history to supplement the 6 books I have already written.  I am also in the process of compiling DVD number 6 as well,

When I am not working on the family history research I Am working on this daily Blog, " Living with Dermatomyositis" it is my way of coping  with the disease and letting friends and family know how I am coping with life, I am also aware that there are many people reading this who have Autoimmune diseases and find it helps them to see how other people cope with it, it also highlights the comical side of life  and the frustration of trying to get through to the people and organisations who have no idea about Autoimmune Disease and how it affects people.

One other thing that takes up a lot of my time is compiling the two websites that I am working on, both these websites have come about since I have been diagnosed with Dermatomyositis. The first website is "Myositis in Focus" I started this website in the hope that it would help others in finding out about Myositis, when I was first diagnosed, I had no idea what it was all about and found that others knew even less, so I resolved to research and put all the relevant info I could find into an easy to use website and have it all in one place, this is a mammoth task and will be a continuing work in progress

The second website is PO4Online. This website was started after I found that the city I had lived in since 1977 was not very "Disabled Friendly", something that I could only see once I was in that position, so with time on my hands I decided to try and get a portal up and running where the residents and visitors to Portsmouth could find the best places to go to if they were mobility impaired, again how successful this will be I don,t know but again I gives me a goal to aim for to help other people.



Well there you are folks all the above along with facebook keep me busy when I am at home and I also enjoy it, I am off to my sons tonight for a couple of hours so an early dinner tonight, hope todays post has not bored you silly and normal stupidity will return tomorrow.

Just another manic Monday

Bright eyed and bushy tailed

"Good Morning one and all" well it is here in the UK, not a bad nights sleep last night only woke up twice between 10.30 pm and 6.30 am,so here we are at 6.45 am bright eyed and bushy tailed, and ready for another day in my Myositis world. First things first is a coffee and the Folic Acid Tablet and then up ready for the carer, who will be coming at 8.30 am today, thank goodness it is the regular one today after the scare I had yesterday

Well the weather is certainly on the change today, they give heavy showers and sunny periods today, at the moment the sun is shining so hopefully we will get more sunny periods than showers,

Anyway get breakfast out of the way, carer arrives on time and gets me groomed for the day ahead, ring Pauline and she will be round about 10.30 to take me to Asda for some shopping so got an hour or so to pass so what else than to go on facebook for an hour and see what is happening around the world,

back home from Asda

true to her word as usual Pauline arrives at 10.30 so into the car and off to Asda at fratton to do some shopping, I leave the wheel chair at home and walk around Asda with the trolley as support, it seems to work well like this, get the shopping and then head back home for a well earned coffee.

Get in door and have a nice coffee, pauline takes my washing and makes her way home, so all in all avery pleasant Morning, get some lunch and then Phoned Doctors surgery to see about blood test results, the white blood count was raised so will phone the GP tomorrow and see what action we need to take, although it looks like it is to do with the steroids


So another exciting day comes and goes, but as days go not a bad day so now to relax and catch up on the TV news ans see what has been happening around the world, so until tomorrow, Tatty Bye.

Rain Rain Go Away.

Sundays Weather

" ♬ ♫ ♪The Sun is out, The sky is blue, There is no cloud, to spoil the view ♪ ♫ ♬ and so the words of Buddy Holly were playing on the radio, this morning as I was sat in bed looking out at the rain coming down.  the weather has certainly changed overnight here on the south coast of the UK. the weather forecast is for rain and periods of sunshine today with a temp of 15 c and 100% humidity, which makes breathing a little laboured , anyway must get up and have some Breakfast ready for the carer to come and get me groomed for the day.

A better nights sleep

Had a better Nights sleep last night although did not get to bed until turned midnight but only woke once at 2.30 am and then again at 7.45 am so not to bad, so all in all a decent nights sleep.

Not a lot planned for today, pauline is down in Weymouth for the weekend with Gordon, they have gone to a friends wedding so hopefully they will have a good trip back today, so I will probably just get a few things done about the house today, although I have my son Gervase coming round this afternoon for a hour or so.

A new Carer Arrives

Well that was a scary 15 minute,s the carer turned up about 9.45 am, it was a different carer today , I have never seen her before, she was a big Woman and very officious, scared the living daylights out of me, she was a very " I am in Charge " type of lady and not someone you would argue with, " Thought she was a weight lifter" anyway I breathed a sigh of relief when she had finished "

Shredding the Paper work

Thought I might have a go at sorting out some of my old paperwork that was stashed away in the back room, this is left from when I used to run my own Driving school in Portsmouth, Don't think I will need it anymore. it is mainly customer records, reciepts, etc so will all need shredding so now seems like the time to do it, so get out the shredder and make a start.

Well I have shredded two box files of paperwork and filled a black bin bag so that was a good couple of hours work, at least it has freed up a bit of space in the cupboard. so now time for some lunch and then a quick walk round to the Tesco Express to get a couple of items.

it's to wet to go to Tesco.

Well had some lunch , was going to have some chicken soup but decided that I would puree an Asda "Sausage and Mash" that is in the fridge as it has to be used by tomorrow, and I will be going to Asda tomorrow with pauline to do a weekly shop, anyway I was now going to go round to Tesco, but it is raining so will not bother, will get Gervase to bring me in some items when he visits later this afternoon.

Well Gervase turns up at 2.45, he has  popped into Asda to get me a couple of items that I needed, so that will keep me going until tomorrow, we had a nice chat for an hour or so and then he has to go at 4.00 pm as he is out tonight round leannes mum ( Elaine) so I will now get this blogg finished and then settle down in front of the TV for the evening. so until tomorrow I will say good bye

Daydream Believer

Well that was a night to remember, Did i go out and get Drunk !!! NO !!!!,  Did I spend the night in the arms of a fair maiden !!! NO !!!!, Did I win a fortune on the lottery !!!!! NO !!!!!!!,  What happened was I could not get a decent nights sleep last night, Don,t know if it was the excitement of having my meters changed yesterday by the world Health and Safety Executive, or if it is the tapering off of the Prednisolone or the taking of the Methotrexate, or a combination of all of it but I Could not sleep. Went to bed at 10.30 pm awake by 12.30, then awake again at 2.30, got up at 3.00 am went on to the computer, back to bed at 4.00 am awake at 7.30,  so at that point made a coffee and then got up ready for the carer., notice the hands were quite red today, so could be going through a bit of a flare with the tapering off of the Prednisolone,  still gone back up to 18 mg a day from 15 mg as it seems that we are tapering off to quickly. anyway hopefully will have a better night tonight.

Am walking around in a bit of a daydream today,  walked around to Tesco Express to get some milk earlier this morning, that was ok but felt the leg,s were feeling a bit stiff so when I got back home went and had a lie down in bed for an hour, until my son phoned to see if I was OK, as he saw my posting on Facebook about not sleeping

However Had some lunch at about 2.00 pm and am now getting dinner ready at 5.50 pm and must say that I am feeling a lot brighter now, so hopefully I will stay up a bit later tonight, and get a decent nights sleep, well at least we can hope that I do.

apart from that it has been a very quiet and uneventful day today, had a chat with the neighbours and see all the students are moving into their rented accommodation further down the street, that is the problem at the moment, with the current financial situation, any properties that go on the market at the moment are being bought by people to let them to students.

However I will leave it at that for today before I go rambling on so will be back tomorrow,so until then tatty bye.

Health and Safety gone mad

My Carer

 From the pen of William Shakespear, as he sat in his house at Stratford-on-Avon, Friends, Romans and Myositis friends, lend me your ear,s ( I cant afford to buy them) today has been a "Funny old day" and for a Friday that s a change. The day started normally enough, had a decent nights sleep again ( Could get used to this) and was up at 8.00 for the carer to come as she is arriving earlier today as I have the Gas and Electrical meters being changed today. Anyway carer comes as promised at 8.30 and get me groomed and ready for the day.

Feeling Tired.

Decided to phone the doctor today as since reducing the Prednisolone I am starting to feel a distinct lack of energy during the day, my Neurologist did say that this would happen as we are reducing at quite a fast rate, ( 5 mg every week until we reach 10 mg daily),  It is probably the reason why I am sleeping better at night but I need to stay awake during the day as I have things to do.

The Family Doctor.

Anyway spoke to the doctor and she said that I probably need to reduce by 2.5 mg a week instead of 5.0 mg a week so this is what we are going to do and slow the rate of tapering, and so she is writing a prescription for me for 1 mg and 2 mg Prednisolone so I can alter the dose. so hopefully that will restore a little more energy during the day, It seems that my lack of energy kicked in after I went from 30 mg daily to 25 mg daily. that was 2 weeks ago.





Health and Safety Gone Mad

Gas Man

As Victor Meldrew says in "One foot in the Grave " I Don't Believe it  The Gas fitter turned up about 9.30 and changed the Gas meter for the new one and no problems there, as the gas meter is in a box outside the front of the house.

Electrician

But when the Electrician turns up, that is where it gets silly. My electrical meter is situated up at the top of the wall in the lounge (approx 2.3 meter's above the floor) so will need a step ladder to reach it, anyway the electrician takes one look and says "No, can't do that , needs a step ladder", I say "have you not got one in the van" He say,s "No, this is a two man job, will have to re-book it for next week " I say " No, I will phone and they can rebook it for later today" He say,s "you will be lucky if they do that" anyway I phone Southern Electric and after speaking to a Manager get promised that the Electricians will call back later today and change the meter, He explained that the Health and Safety at work says that if the have to use a step ladder then there must be two people present at the job, and also that they have to use special safety step ladders, and only workers that have completed the two day course in using "step ladders", can carry out the work.

Now those of you that suffer from Myositis will understand my predicament here, as you know that once on the floor it is very difficult to get back up, so you can imagine how I felt rolling around on the floor laughing my ass of at the thought of some one having to do a two day health and safety course in using a step ladder.

Happy Pills

However composing myself I thanked the chap at Southern Electric, had a few pill,s and went for a lay down on the bed to recover and compose myself, at least with all that going on the reaction from taking my Methotrexate seemed to pass me by.

The two Electricians turned up at 3.00 pm this afternoon complete with Regulation Step Ladder, Safety Helmet and Gloves and replaced the meter, so all well that ends well

Now that was an exciting day as days go, my son is going to collect my prescription from the doctors this afternoon, so should be able to alter the pred tomorrow so that is enough excitement for you all today, so until tomorrow, Adios Amigo,s

Another Day, Another phone call.

good nights sleep ??

Good Morning/Afternoon/Evening ( Depending where you live) and welcome to another exciting Myositis day. well again I had another relatively decent night, slept through from 12.00 midnight until 4.15 am and then again from 4.30 am until 6.45 am  I am putting the reason for these better nights down to the reduction in the Prednisolone. as I am now down to 15 mg daily from yesterday and to 10 mg daily from next Wednesday, the down side is that I find that my energy levels throughout the day are reduced.

Any way have a nice coffee and then get up at 8.00 am ready for the carer to come and get me groomed for the day ahead, as it happens the carer is running late late today and does not arrive until 9.20.

Anyway just as we are about to start so the phone rings and it is the Dietician from the hospital, now this is a surprise as I have not heard from her since I was released back home from the hospital.

The Phone Call

The Phone call

( Dietician) Hello Mr Smith , says the voice on the other end of the phone, It is  the Dietician here from the Queen Alexandra Hospital, just phoning to see how you are getting on, How long have you been home now.
"Surly they should know when I was sent home" ?
( Me ) Oh Hello, yes not doing to badly, still cant swallow so still on a puree diet, but there is some improvement.
(Dietician) That,s good are you still having trouble swallowing
( Me ) Yes, as I said there is some improvement, but still on a puree diet.
(Dietician)  It is some time since we last phoned you isn't it.
" They have never phoned me since leaving hospital "
(Me) This is the first time you have phoned since I left Hospital, spoke to Speech Therapist last week and being refered for another Barium Swallow to see how things are before starting any exercises.
( Dietician ) You seem to have dropped of our radar, anyway glad you are doing ok, have you put on any weight.
" by now she is getting on my nerves "
( Me ) yes I have put on about 1 stone since leaving Hospital.
(Dietician) Oh' thats good, well we wont call again we will leave it and if you have any problems then you can ring us.

Don't you just love the NHS Budget cuts

Wel that was a turn up for the books, anyway, got groomed ready for the day ahead, Pauline phones to say she will be round about 11.00 am and we will go over to B&Q to look at the carpet tiles for my lounge and Hall, and Vinyl for the kitchen floor decide to get changed and wait outside in the sun for pauline, so go outside about 10.45 and pauline arrives just after 11.00.

We decide that pauline will push me over to B&Q in the wheelchair so off we go to B&Q. Have a look at the tiles and Vinyl and see some of my old work mates,  decide to have a coffee and a cookie for me and Sausage roll for Pauline. What the Heck, £1.80 for a cup of coffee, Should have gone to Homebase LOL, Anyway made a nice change and enjoyed seeing everyone, decided that I would give pauline a rest so I walked back home ( all be it slowly ) but it is getting easier bit by bit, stopped at Tesco and got some Strawberry's and cream for tonight and then home,  Pauline makes her way back to her place, and I decide to get some lunch as it is 1.00 pm, and then a rest this afternoon ready for my son,s visit this evening. so all in all another decent day. see you all tomorrow, Tatty Bye everyone.