Another myositis Roller Coaster Ride.

So believe it or not We are at Friday, My last Journal was on Monday so where has the week gone, well it has been one hell of a ride. Good job I know what was happening and go grab hold for the ride in the early stages.

A Typical Roller Coaster ride

For those of you who read my Journal on a regular basis you will see that from Wednesday last week up until last Sunday, I was chugging around like a Formula one driver on my rollator and it was not long before the myositis got really pissed of with me and decided take back control again, ( I think my Myositis is a bit of a control freak),

Do Not Let Myositis Win

Anyway as you will see from Mondays Journal I was feling a bit fatigued, and come Tuesday I could hardly keep awake, I ached all over especially my upper legs and thigh,s and so I decided that I needed to up my Prednisolone from 5 mg every other day to 10 mg a day until the weekend to halt it in its tracks, I have been slowly tapering down on my Prednisolone and am on 5 mg alternate days, but at that low dose I just can not function so I am hoping that when I see my Neurologist on the 18th September that he will allow me to increase my prednisolone back up to 10 mg daily as that is a dose I can function on, and also I need him to arrange a Adrenalin Insufficiency test to see if my Adrenalin gland is producing Corticosteroids after being so long on the Prednisolone and taking my age into concideration.

That Question got my Consultant Confused

The Other Thing I am waiting on is to see my General Practitioner on the 2nd of September to see if she has (1) got the result of the x-ray on my Knees and (2) to see if she has found out why my Calcium Supplements were stopped at the end of 2012, and also my B12 supplement stopped, Both were stopped by my dietician and my GP cannot see why they were stopped seeing as I was on high dose Prednisolone at the time.

My General Practitioner  (GP)

 The dietician stopped my Calcium and B12 when I got back to eating a soft lump,s diet after being almost 10 months on a Puree diet after being treated for Chronic Dysphagia, after having swallowing problems which was the start of the Dermatomyositis Journey, she also stopped my Vit D and Vit C and Strontium Ranelate at the same time.

Could this be a sympton of Dysphagia Doc

I bet you are all sat here intrigued and thinking good grief don't frank rabbit on, well "yes", "yes I do", it helps to pass the time, but seriously it is amazing how Myositis can take you from a high spot to a low spot in a matter of a day, anyway after sleeping through most of Tuesday I slept pretty well on Tuesday night and was feeling brighter on Wednesday Morning, although still having trouble with my legs and so I phoned Pauline to see if she was happy about taking me out shopping as I could not do to much walking so would need to be in the wheelchair most of the time but she was happy to take me in the wheelchair and Gordon came shopping with us as well so in the end it was a nice day out down the city centre, Gordon pushed me in the wheelchair around town and as usual we got a Taxi there and back so it was a good day and we had a nice Coffee in the cascade shopping centre as well.

Gordon and Me sitting in the Precinct in the City Centre.

Mine and Pauline,s coffee,s in Boswell,s in the Cascade shopping Arcade.

so there we are Wednesday was a good 3 to 4 hours out in the Sunshine in Portsmouth city Centre, I think I made the right decision to stack with the wheelchair today. The afternoon and evening went well and again apart from watching Tv and drinking coffee nothing much happened, went to bed at about 10.30 and had a not to bad night, and thursday I was feeling so much better although still feeling achey in the legs and knees, I was not feeling so fatigued, and so I took 10 mg of Prednisolone again this morning and it is obviously doing the trick, again it was a day of rest apart from the phone call to the Council Tax department  This is a long story but I will give you the shortened version, this is where my tolerance or lack of shows up.

Although I consider myself efficient in the use of technology I refuse to be dictated to by Public offices to insist that I use technology to pay my Due,s. I have no issue about Paying my Council Tax, but as I am paying the local Authority for a service I expect to receive a service, therefore I will pay my Council tax Monthly in Advance in Cash at the local Civic Office, some times though I find that it is not possible to get there so I phone up and pay over the telephone by giving details to a person in the Local Tax office, However due to the cut backs in the number of staff it is getting more difficult  to get either connected or to speak to anyone, however that was the case this week, as it happened I missed last months Payment so this week I get a letter saying I am in arrears for July and August so I think OK, I will phone up and pay, and here is where the fun starts and my tolerance wears thin.

Not a Happy Chappy

Well I am on the phone waiting over 45 minutes before someone answers and while waiting I keep getting recorded messages saying " you can contact us on our email @" "You can pay on our automated phone line", etc, anyway eventually I get a advisor who has obviously had a bad day but her "biggest mistake was by talking it out on Me." her reply to me saying that "I had a letter saying I was two months is arrears  and it was because I was  unable to get down to Pay so I would like to pay it now was"well you could have paid it by check, Well if I can not get out to go down to pay at the office, I cannot get out to post a letter. I think that upset her as She put the phone down on me so I will go in and pay at the office on Wednesday when I go shopping with Pauline.

All I wanted to do was pay my Council Tax by Debit card, If I pay online by Credit card they put an extra charge on the card, and I refuse to pay by Debit card on line as you get more protection for online payments by using a credit card.

Oh well I really must not let people wind me up but she started off on the wrong foot and the wrong attitude.

That was hard Work

Well the rest of the day was spent resting before having dinner at 6.00 and going down to see my son Gervase and his wife Leanne for the evening , Leanne,s dad "Dave" was also there and so were 4 of the cats

Crystal

George

Hugo

Sawyer

After a good Evening and I was back home by 9.30, and in bed by 11.00 and had a decent nights sleep and so here we are at Freaky Friday.

Woke at about 8.00 am As Gordon will be down this morning about 10.00 to help me with my Friday Bath , I have my breakfast and then take my 10 mg of Prednisolone, I must say that I am back almost to where I was on Saturday, so I will drop to 5 mg daily for the weekend and then on Tuesday back to 5 mg of Prednisolone on alternate days..

Well Gordon arrives at 10.00 so we have a coffee and then he Gives me a nice Haircut, and I must say it feels so much better to have some of my hair trimmed as it is so fine these days and I lose some every time I comb it.

Thank you Gordon

Once I had had the haircut, Gordon helps me into the bath and also helps me out as well, and then I feel all clean and Sparkly again, it feels so nice after having a nice soak in the bath, during the week I have strip washes, as I cannot get into and out of a bath that easily even though i have a bath step, rails and seat.

Enjoying a Bath

once I have had a bath we have a chat and I get shaved and dressed and then we go out to get a KFC and also some milk and honey and a daily paper, once back home Gordon makes his way home and I settle down to take my Methotrexate and then start to get to work on my daily Journal for the lsat 4 days.

Time for Methotrexate

well that is about it for another week, Back to 90% functioning so time to get this journal posted and then a nice restful night of listening to classical music and reading a bit about Portsmouth in World war One. so until the next time I will say

Where do the days go to ??????

Welcome to..................

It just seems like no sooner does the day start than it is soon time for bed again, They do say that as you get older that the days seem to go quicker.

So seeing as the days going by so quickly must be a sign of getting older perhaps I should buy myself a book on getting Older ..................

After my positive appointment with my Consultant Neurologist on Friday and then the taking of the Methotrexate, the week end went pretty much like every weekend does after freaky Friday.

Saturday 7th September 2013

Friday night was a decent nights sleep and saturday was a bit of a nondescript day really, so did not do an awful lot on Saturday, I did go for a bit of a walk round to co-op in winter road to get my morning paper but most of the day was spent watching old repeats of Bonanza and Gunsmoke on the CBS action channel, so that is one of the good things to taking the Methotrexate it wipes me out for a day or two so I can catch up on some nostalgic TV series from my Youth

Those were the Day,s

Bonanza 1959 - 1973

Saturday evening was a good evening as I spent a good 4 hours watching the last night of the Proms live on BBC 1 and 2  from the "Royal albert Hall"

The Royal Albert Hall, London.

Last night of the Proms BBC 1 and 2

Sunday 8th September 2013

Sunday was much the same although my Son Gervase came round to see me for a few hours in the afternoon and took me down to Asda in Fratton to get some shopping so that was a nice change, by Sunday afternoon the Methotrexate "Yucky" feeling is wearing off.

Asda at Fratton (Stock Photo).

anyway once we had done the shopping we head home and after putting the shopping away we sit and have a chat and put the world to rights before Gervase heads back home to Leanne.

Monday 9th September 2013

well come Monday and it is time for the slow cooker to come out of the cupboard as Autumn is approaching, so it is time to get out the Slow cooker recipe book. when I was shopping with Gervase Sunday I got a nice chicken breast quarter and a nice pork cutlet along with a nice pack of fresh casserole vegetables so after breakfast I get the casserole pack into the slow cooker with the Chicken breast Quarter and add the water and stock cubes and set the slow cooker on its low setting so that it will be all cooked ready for dinner at 6.30 this evening.

Casserole Vegetable pack

Fresh chicken breast Quarters

Pauline and Gordon were down at there Flat this morning and popped in to see me for a coffee about lunch time so we had a coffee and a chat an I gave Gordon his Birthday Card and Present as it is his birthday on Tuesday. Pauline and Gordon stayed about an hour and then headed back home to Waterlooville, so I settled down to catch up with some Tv and also to get another "Myo Man Dreams" Cartoon strip done, I did one on Sunday as well It is nearly a year since I did the last one so decided I had better start getting creative again.

Sundays Cartoon strip

Mondays Cartoon Strip

well monday was a pretty good day all round and I was ready for my Dinner from the slow cooker so at 6.30 it was a nice Chicken Casserole followed by fruit in Jelly and It was very tasty, and there is enough vegetable left in the slow cooker to have with the slow cooked Pork cutlet on Tuesday.

A Tasty slow cooked Chicken Casserole home made with fresh ingredients 

 Monday night was spent watching the TV before heading off to bed at 10.30 to listen to the local radio quiz before getting off to sleep at 11.30.

Tuesday 10th September 2013

as Usual Like any other morning it starts with a trip to the bathroom before a coffee which gets taken back to bed.

The morning Ritual

Once I have had my Coffee and lie in I then make another coffee and take into the lounge, where I send the text to Pauline and then have breakfast, Pauline phones back and says that Gordon is having a birthday lie in today and then they are going into the town later on this morning so ......................

HAPPY BIRTHDAY GORDON

So another day of watching TV, and relaxing until tomorrow when it will be shopping with Pauline down the city centre and also Morrisons. anyway at 10.00 I get the Pork cutlet into the slow cooker and also the remainder of the vegetable from yesterday, I add a rasher of Bacon and some extra stock and then put it on to the slow setting so it will be ready for dinner tonight.

A tasty fresh organic Pork Cutlet

Once that is all ready I get the washing up done and then settle down to get this journal written. I will be so glad when I get my new computer, which hopefully will be the second or third week of October if all goes to plan, anyway after a little while I take a break and  go and get a paper and some milk and then have another spell at the Journal, at 1.00 I make a nice Toasted Bacon and Egg sandwich for lunch and also a Banana, before getting back to the Journal.

Toasted Egg and Bacon Sandwich for lunch

So it is now 2.40 and the vision has just about had it with the computer for the day so I am going to end todays Journal and to remind you all that it is only 11 days to Myositis Awareness day on Saturday 21st September. so do what you can to raise awareness of Myositis in your community.

so until the next Journal I will say.................

Forecast is Tropical storms on the way," But are They" ?????????????

Well you never know in this country at the moment so we will see but until then Welcome to Saturday.

Well again it was a decent nights sleep last night, although I must admit I did not get to bed until about 11.45 as I stayed up watching NCIS on the TV . Anyway slept through until 7.30 when I made a coffee and took back to bed until I got up and into the lounge to text Pauline at 8.15. Pauline phones back to say that all is OK with them so that is OK so I settle down to watch the morning news and weather forecast while having some cerea; and a Banana for Breakfast.

Forecast for 4.00 pm tday

Well although we have been forecast "Tropical Storms) for today this is the Forecast for 4.00 pm today for the Portsmouth Area and so far I have seen about a dozen drops of Rain ????? Oh Well perhaps we will get it tomorrow................

Forecast for 4.00 pm Sunday

................... Or perhaps not...........

Well the Methotrexate is playing games today so it is going to be a day of TV for today I think, anyway at 10.30 I take a walk round to the paper shop and get the morning paper and then back home, make a coffee and then settle down to Phone my son Gervase as they had problems last night with one of the cat.s catching a tiny little field mouse in the kitchen , so I just had to do this.

Mind you it was a very brave mouse to venture into a house with 5 cats roaming around, anyway after I had spoken to Gervase I settle down to read the paper and then have a lie down before getting myself some Chicken soup

after lunch I go onto the CBS Action channel as they are showing two episodes a day of Bonanza, and then after those two it is two episodes of Gunsmoke, so that is the afternoon,s Tv viewing taken care of.

Bonanza 1959 - 1973

Gunsmoke 1955 - 1975

Well it has been a nice restful day so far today and am looking forward to a nice night in front of the TV after dinner  watching the last two episodes from series 10 of NCIS and then at 9.00 it will be a nice movie the 2010 making of "Robin Hood " with Russell Crowe  and Kate Blanchett.

Robin Hood 2010 with Russell Crowe.

Ok so it is now 5.30 so I am going to get todays Journal posted and then  at 6.00 I can get dinner started so that I can settle down for the evening, so until tomorrow I will say..................

From my new friend Ant E Dote................ keep you eyes open for a new cartoon with Ant in it.

"Wow"is today Hot or What ?

So here we are on another sweltering day here in Sunny Southsea.

Vintage Poster for Portsmouth and Southsea

The weather is certainly treating us with some welcome Sunshine this year after the last few years of cold and wet summers, so people should make the most of it, although I find that the heat does make it heavier to breathe especially with the air pollution from traffic fumes that the hot weather brings, I still enjoy the sunshine and the smell of People BBQ,s in the evening. and as long as I cover up my arms and wear a hat when I go out, then that is OK with me.

Wearing a hat when out walking in the sun

  had a decent night last night and was up and sending the text to Pauline by 8.30 this morning, and already the sky is a clear blue and the sun is shining so first thing I do is to open the windows as the temperature in my lounge is 22C which is about 74F

Portsmouth at 8.30 this Morning.

decide to just have a Banana and Yoghurt for breakfast this morning and then check out my emails and facebook. Pauline phones at about 9.10 to say that Gordon is out with Misty and that Her and gordon will be round at about 11.00 so that Pauline and I can go down to the city centre to get some shopping and gordon will get the Flat cleaning done, They will also bring my clean laundry round for me as well.

Gordon in his shorts out "Walking the Dog"

Well, once I have finished speaking with Pauline I settle down to watch "Heir Hunters" a Genealogy program on BBC1 until 10.00 when I go and get washed, shaved and dressed ready for when Pauline and gordon Get here. I am all ready and sorted by 10.35 so make a coffee and listen to the local radio, at 10.45 I have a text from Pauline to say they are on the way to men and they arrive about 11.00. we decide that I will take the "Rollator" today and we we will get a bus down to the city centre, which will make a change as I have not really been on a bus for over a year, and then when we have finished the shopping we will phone Gordon and he will come and collect us, so that is what we do.

Here I am on the bus with Pauline on the way to the city centre.

Once we get down to the centre we go and have a wander around and look in the shops in the precinct before heading up the arundel street precinct to wilkinson,s to get some pet bits and pieces for Misty and Charley, Pauline and Gordon,s Dog and Cat. On the way there Pauline takes a Photo of me with the Rollator outside the "Gym" wishful thinking really.

One day maybe.

anyway once we have got what we want in Wilkinson,s we make our way over to the Nationwide Building Society, and then we go yo the Expresso Bar for a coffee and a Sausage roll, before heading back into boots where I need to get some Tyrozets Lozenges for when I have a sore Throat. These are very good and I remember mum getting these for us when we were kids.

These are really good and effective

After we cone out of boots we go into Tesco to get some shopping, we are not getting much today as I have the Rollator, and we will do a main shop on Thursday down at Morrisons, so we just get what we need and then pauline Phones Gordon to say we have finished shopping and we will walk down to the railway station at the end of the precinct and he will come and collect us from there.

Portsmouth and Southsea Railway Station

Gordon soon arrives and we head home, once indoors I make the coffee and we have a chat and at 3.00 Gordon and Pauline make a move back home, They have taken my dirty washing with them and also they are going to drop my repeat prescription into the doctors so that we can collect it on Thursday.

It's not that bad Pauline "IS IT" ?

So that was a good day, and I have done about 2 hours walking with the rollator and I feel really happy about that, hopefully the legs will not feel to painful tomorrow but hey "Onwards and Upwards"

Fight the Fight

well that is about it for today, it has been a really positive day today so I am now going to get a coffee and go out in the garden for an hour before I have dinner at 6.00, so until tomorrow I will say .................