Monday, August 18, 2014

Where did Saturday and Sunday Go

So Here we are on Monday, Where did the weekend go to, I did very little apart from sleeping, resting and some graphic work on the computer, and before you know it we are at Monday and the start of another week so all I can say is.



Turning the clock back to Saturday Morning. Not a bad nights sleep on Friday night, woke a couple of times during the night but was up by 9.00 am. Spoke to Pauline and had breakfast and then just checked on Facebook, apart from that not a lot happening, so a nice restful morning. My Son Gervase phoned to say he will be coming round about lunchtime as he is going to the first home game of the season  for Portsmouth Football Club at Fratton Park and they are having a fans fun day in the stadium car park so he will take me over to see what is happening, as it is within Rollator distance to where I live.
Gervase arrives at about 1.15 and we have a chat and then I walk with the Rollator over to Fratton Park with him to see what is going on.

Fratton Park from the Main Car Park.

Some of the fans at the Fun Day
The Pompey Bus at the Fun Day
The Pompey Shop, Fratton Park
It was not a bad turn out at the Fun Day, and when you think that 2 years ago "Pompey" were on the brink of Liquidation and going out of the English football league after getting into so much debt after some successful years in the Premier league and winning the FA Cup.
It was only through the supporters ands the Pompey Supporters Trust that we survived in league 2 of the football league and is now owned by the supporters.
Pompey won the match against Cambridge 2 - 1, so a good start to the season.

Play up Pompey
After we have been at the Fun day we make Our way back home, we were only out for about 40 minutes once indoors I get myself some lunch ready and Gervase heads back over to Fratton Park to watch the match, as he is a season ticket holder, We have been supporters of Pompey for many years, I remember my Father Taking me to fratton park when I was about 6 or 7 years of age, That would have been in about 1949/1950 and I have been supporting them ever since, through all the bad and good times, I started taking Gervase to Fratton Park when he was about 9 years of age in about 1990.
 After the Match Gervase came in and we had a nice chat about the match, as I listened to it on the radio and then he made his way back home to Leanne, and I settled down to watch some TV and do a bit of Graphic work and then dinner about 7.30 and bedtime at about 10.00, so all in all a good Saturday.


Sunday started with a Thump in more ways than one, I had woken at about 6.30 and as usual I go and make a coffee to take back to bed, Turn on the Radio and Open the bedroom Window to let some fresh air into the room as I get very Dehydrated during the night, and being in a ground floor flat I cannot have windows open at night for obvious reasons, Anyway I must have dozed off because the next thing I know I am awaken by next doors Kitten leaping on to me from the window sill.

I am always being pestered by Cats
Anyway that was the way my day started, Once i had got up and gave the Kitten from next door a drink of water and opened the back door he was happy, he just went up to the end of my courtyard and sat there licking himself and looking at me as if to say " Well that got you out of bed" after that shock to the system I needed a good strong Coffee.

My goodness I needed That 
Well once I had got my self sorted I got some breakfast, Text Pauline to let her know that all was ok with me, Pauline phones back and we have a chat and then I go and weigh myself before getting washed and dressed and settling down to check out Facebook.

Nothing wrong with my weight.
Well once I had got myself sorted It was time to head of down to the paper shop and get my daily Paper, I met one of my neighbours out taking his dogs for a walk down the Park, so I headed of down to the park  with my rollator, we had a nice chat but my muscles soon got tired so after about twenty minutes I headed back home, but it was an enjoyable half hour .

Out with my neighbour with his dogs
Once back home I just spent the rest of the day Resting and listening to the radio.
I got dinner about 7.30 Pm a nice Moussaka,  and then spent the rest of the evening in the recliner watching a couple of recorded episodes of "Highway To heaven"

Highway to heaven with Michael Landon and Victor French.
And so ends Sunday, off to bed at about 10.30 last night and slept through pretty well until this morning


Well This morning started pretty well, It is a lot cooler her on the coast today, apparently we have a cold front moving in from Scandinavia so that will make life a lot more comfortable for me and my walking, I find it hard going walking when it is to hot and humid, a cool breeze makes it far more comfortable for me.

As I said in Fridays Journal, Pauline had made me a Bib for when I am eating.

Franks Bib for mealtimes.
The reason behind Pauline,s needlework skills is that she does all my washing and ironing for me, {She takes The washing home on Wednesdays after she takes me shopping and Gordon takes it on Friday when he goes home to Pauline after Helping me with my Bath etc. And needless to say Wednesday,s washing is returned all clean and ironed on a Friday and the same for Friday,s on a Wednesday, } Anyway as I have to have a lot of liquid with my food due to my swallowing not being 100% and also that my Hand, Mouth and Cutlery co-ordination is not 100% I tend to get food down the front of my shirt, and I think Pauline is getting fed up of having so many shirts to wash and iron, I am all right with Sandwiches, Drinks, ice-cream, cakes etc but Meals are a different matter.

Calm down Pauline
Anyway one I had had my breakfast of cereal (Wearing my posh Bib), I go and get remedy and then head off down to get my Morning Paper, In take a walk around the block and that is enough for me so back indoors to get a coffee and sit and read the Paper and do then crosswords.

Well Today has been taken up on writing this journal and apart from having lunch , I have not done much else, apart from looking into setting up a fun Global Myositis Awareness website, Just turning ideas over in my head at the moment.

Anyway it is now 5.00pm and it is time I got this Journal posted so  as there is not a lot happening today So Until the next Journal on Thursday I will say..................

Friday, August 15, 2014

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
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

Monday, August 11, 2014

A Storm, A super moon, and Sunshine.

Welcome To Monday

Well after the tail end of Hurricane Bertha, and the super moon last night, all we need now is a visitor from outer space and the start of my week will be complete.
My Dream came true

So here we are on A Monday Morning, but Let me tell you first of the events of Yesterday. As you probably Know we were bracing ourself for the arrival of the tail end of Hurricane Bertha that has been tracking across the atlantic from the Caribbean
Here Comes a subdued Bertha
true to form the Storm reaches the western shores of England and Wales, late on Saturday Night and travels eastwards  reaching us here in Portsmouth in the early hours of Sunday Morning. there were several torrential downpour,s and Thunderstorms to begin with and some very high gale force winds which caused some very high waves along Southsea sea Front.
Southsea Promenade early Sunday Morning, Photo By Mike Walker.
Published by the Portsmouth Evening News.
Photograph by Helen Yates
By lunchtime the rain had cleared away Eastwards and Northwards, but the strong winds remained, To say we were lucky here is an understatement as most of the UK got it a lot worse than we did with Mini Tornadoes, Flash Floods etc, I think we were spared the worst as we are shielded by the Isle of Wight to the South and Portsdown hill and the Southdown,s to the North and also we are in a natural bay along the South Coast.

Showing Portsmouth in Relation to the Isle of Wight and the coast line
Showing Portsmouth in relation to France and the English Channel.
However the Isle of wight got some really heavy storms as did some of the villages inland from Portsmouth but the storm affected Wales and the Midlands and the North of England far worse than we did, also the east coast got hit quite badly as well.
The weather cleared  and had settled down a little bit in the afternoon so my Son Gervase was able to come and take me shopping at 2.00 pm, we went to Sainsbury,s up at Farlington,
There were some heavy gusts of wind along the dual carriage on the way up to Farlington, but not to bad, anyway we were back home by 4.30 so after that it was a nice evening of relaxing and watching the TV, until bed time at 11.00,
Sainsbury,s at Farlington
As I said earlier we were back home by 4.30 so I put the shopping away and made a coffee and sat down for a chat with Gervase, He left about 5.30 to head home to Leanne and I get my Dinner cooked, a nice Steak Burger with Broccoli, Sprouts, Potato and Gravy, followed by Tropical fruit salad in Jelly ( which Pauline made for me) and then an evening of Facebook and TV until bed at 11.00.

There was also a full moon last night, what they call a Super Moon, apparently it is the nearest it has been to the earth for a generation and the next time is in 20 years time, Perhaps this has something to do with the weather ???
The Moon above the Houses
I went to take a picture with my Phone, it is not that good as too much light in the city but at least you can see it
Its Time for Bed
Well I had a decent nights sleep and woke at 6.00 am this morning feeling not to bad, I know I am Ok as I got out of bed without falling on my butt, so that was a bonus. anyway as is the norm at the moment, I make a coffee and just do a quick check on Facebook on the Laptop.

I Want My @@*&@@ Breakfast
1 hour later I am still there I blame the Australians. On the Australasian myositis support group, so I wrote a little poem and put on there this morning for them.

For Amber and Barry and all those people on the Australasian Support Group.
 Once I had managed to drag myself away from Facebook, I get myself some Breakfast of Wheatabix and the obligatory Four  prunes and then get washed and dressed, before going back to Facebook to check out the other Global Myositis Support Groups,

There are 4 Myositis support groups all together and there are links to them on the left hand side of this blog under Facebook Groups, the 4 groups are.
  • Myositis support and Understanding (USA Based)
  • Myositis Friends support Group  (UK Based)
  • Myositis Support Australasia. (Australian Based)
  • Myositis-Canada. (Canada Based)

These 4 Groups are closed groups and are for People that have one of the forms of "Myositis" or who is affected by Myositis i.e. Spouse, carer, relative, medical professionals, Although based in one of the 4 countries as listed that are open to people from all over the world, and because of the time differences around the Globe, they are truly a global 24 hour a day support group.

There are other myositis Facebook groups such as the Ramblers KIT Group plus others there are also links to those on the left hand side of this blog under Facebook Groups.

Anyway once I have posted and checked out all the Myositis sites I then go and get my daily paper down the local shop and have a walk around the block on the way home, I am only out for about 20 minutes, as the wind is still very strong, once back home it is a nice coffee and settle down to read the paper and do the crossword,s before going for a lie down for 30 minutes before getting some lunch at 1.00 lunch time.
Going to Settle down with the paper
today I am having some John West Canned Smoked Mackerel fillets with Toast for my Lunch.
These are really nice on Toast.

Well that was very tasty, healthy and filling, so now to settle down to watch the news and get this Journal started. as it is now 1,45.

Now it is 3,30 and I am just finishing the Journal so now to get it Posted and then start getting myself sorted and decide what to have for dinner tonight, something with a jacket Potato I think, anyway that is about it for today, the rain has kept off, but the wind is getting stronger, so until tomorrow I will say .............

Saturday, August 9, 2014

A Treck into the wilds of Milton.

Good Morning all you lucky people it is me again, with more exciting and nail biting tales of life with a Rollator. so welcome to................

Should get up when
 I wake up
Well Saturday morning was interesting to say the least, For the second morning running I woke about 3.30 isn with a very painful shoulder, Why this is happening again I have no Idea, anyway it was a case of applying "Deep Heat" and taking a couple of co-codamol and then getting back to sleep again,  before waking at 7.30.

I have a suspicion that I "Cricked" my neck on Thursday, reaching to get something out of the cupboard , anyway if it happens again over the weekend I will phone the doctor on Monday,  anyway instead of getting up and out of bed I decided that I would just check on Facebook with the iPad, Big Mistake, still there at 9.00 am

My Trusty Rollator
Once I am out of Bed I text Pauline and then get some breakfast and get dressed before Pauline phones and we have our morning chat, Pauline has only just got up, so looks like we are all having a lazy start to the day today, Anyway after I have spoken to Pauline it is on to the lap top to check emails etc before deciding that as it is such a nice day today and that we are in for some wet and stormy weather over the next week I will go for a walk to Bransbury park and Milton road with the Rollator, I am under no illusion that I will probably suffer for it over the next few days but I know that my leg and thigh muscles are getting weaker , and my Knees are starting to give me trouble, so I need to walk while I still can.

So  after making sure I have an ample supply of Food, water, Tena, Medication and camping gear I head of out to explore the wilds and to face the perils of walking to Bransbury Park with my Rollator.

The Reason I am so attached to to this area and why I live here is that it is where my Mother and my aunt and Uncle were  born and raised and where they all lived from 1918 until about 1925 when my Grandfather was Posted to Ireland before moving back to Fareham, just outside of Portsmouth in about 1928. so here we are with a photographic tour of my walk today

The first Photograph is walking east along Goldsmith avenue towards the Milton Road, with Milton Park to the left.

This is Milton School, it is in milton Road, just after entering from Goldsmith Avenue, This is the school that my Mother, Auntie Maud and Uncle Fred went to, Mum would have gone there in 1918, when she was 5 years of age.

The two photographs above show one of the little independent shops still trading in the Milton road " known locally as "Milton Market" it still has sweets in the jars and weighs out the sweets you require and serve them in a little paper bag, memories of days gone by.

This shows one of the flower beds by the bus stop in Milton Road, at the entrance to Bransbury Park.

Time for a coffee at the "Art Cafe" situated in Bransbury Park, an excellent little cafe with a wide range of food and very nice tea and coffee, a independent cafe .

These two Photographs above is the area of Bransbury park, that the "Art Cafe" is situated in a nice peaceful place to sit and enjoy the sunshine

This Photograph is the area that runs along the side of the sports areas, tennis, soccer , miniature railway etc. that is about it for me so now tio head back home, I have been out almost 2 hours, 

The final two Photographs are taken as I go home via the side roads and shows the victorian houses and architecture  along the Tree lined roads that makes up most of the residences in the southern half of Portsea Island and the district of Milton.

So here I am back home and I am absolutely tired out, my legs feel as if I have run a marathon, I have been out about 2.5 hours and enjoyed it but I now need a light lunch of Chicken soup and then go for a cat nap for an hour or so.
Chicken soup for lunch.
That was a lie down that lasted longer than I thought, anyway I now need to get this journal written while listening to the Portsmouth soccer match on the Radio, which Portsmouth drew 1-1 against Exeter, it was the first match of the 2014/15 season. well the Journal is written and now to get it Posted before thinking about tonights dinner which is a nice Marks & Spencer fruity chicken curry, my saturday treat after Freaky Friday,

Tonights dinner will go down a treat
So until tomorrow I will say.............