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

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.............

The August bank Holiday and the sun goes away

All that super weather we have been having, heat waves and sunshine and what happens when the August bank holiday arrives, the sun goes away "Typical"

However welcome to...................................

Saturday 24th August 2013.

Saturday started pretty well really considering I did not take my Methotrexate until later on Friday evening, had a decent nights sleep on friday and had a lie in until 9.00 this morning. once I was up and in the lounge with a coffee I sent the morning text to Pauline and then settled down to have some Porridge for breakfast.

well once I have had breakfast I take a stroll with the rollator round to the tEsco Express to get my morning paper and also some milk before going back home and settling down to read the paper  and get the crosswords done. It has been a quiet morning so far and have been messing around on facebook and then the front door bell rings and it is Gordon and their friends son Charlie. Gordon had hired a van for the morning and They have been down to Pauline,s flat to move the last bits and pieces over to te Garage at their new home, and popped in for a coffee on the way back.

Charlie helping Gordon

After Gordon and Charlie have gone I get some lunch and then go for a lie down for an hour before taking a coffee into the lounge and going on to the computer to do some more world war one research.  Next Year is the 100th anniversary of the start of WW1 and Portsmouth is bidding to become 2014 National Armed Forces city as 2014 is the 350th anniversary of the Royal Marines, the 100th anniversary of the outbreak of WW1 and the 70th anniversary of D-Day

HMS Illustrious leaving Portsmouth in Aug 2013

D-Day Museum Portsmouth

Royal Marine Museum Portsmouth

Royal Navy museum Portsmouth Historic Dockyard

All in all it was a very enjoyable afternoon and it was soon 6.00 pm and time to give the research a rest, I had recorded two episodes of Bonanza which I will watch tomorrow morning and now there are two episodes of "Walker Texas Ranger"on the CBS channel which I can watch, but first I need to get my dinner prepared and on to cook ready for 7.00 and while that is cooking I watch the Tv and have dinner at 7.00. it is salmon with fresh vegetables and a parsley sauce tonight and it was very tasty as well.

well I had just finished Dinner at 7.30, made a coffee and had settled down to an evening of watching TV when Pauline, Gordon and Charlie arrive. They had decided to come and visit for the evening and brought a deck of playing cards and some bags of Pennies so we spent the evening playing Cards for Pennies (Newmarket) and guess who won the most money (41p) "ME" we played until 10.30 and then they left to go home at 11.00 so y the time I sorted myself out I got to bed about 11.45, but what a super and enjoyable evening after a good day.

Its Mine all Mine

Sunday 25th August 2013

"Early to Bed, Early to Rise"

"Makes a man healthy, wealthy and wise"

or so the Poem Goes, well last night that did not apply to me and today I had a lie in until 9.30, well that was a brilliant evening last night, and I slept really well, but will probably have to rest a bit today, but well worth it.

Time to get up

Once I was up and in the lounge I had a coffee and sent the text to Pauline before getting some breakfast. Pauline phones back to say that all is ok with them , her and Gordon got up about 9.30 but young charlie was still fast asleep, still he is only 15 so no surprise there. and Gordon is out with misty for her morning walk so that is OK

Don't get lost in the woods Gordon

once I had spoken to Pauline I had my Breakfast and then got on the laptop to check out the emails and facebook. before I have a phone call from Gervase to say that he will be round about 2.00 to go out to get some shopping. so I spend the morning just relaxing with the local radio and the laptop.
As it is a bank holiday there is the yearly kite festival taking place on southsea common along with other events so it is probably busy down the seafront today

The kite Festival this weekend on Southsea Common.

There are several other things going on in Southsea this weekend, There is the "Gerry Cottle Circus" on the common until Tuesday,

Gerry Cottle,s Circus

There is also a Tribute band concert on at the Bandstand this evening ending with a firework display at 9.30 pm.

The bandstand at Southsea Castle fields.

Gervase arrives at 2.15 and we head off down to Asda at Fratton to get some shopping, it is not worth going to far as the roads are chock a block with traffic, anyway we get the shopping and head back home where we put the shopping away and then have a nice chat before Gervase heads back home.

Asda at Fratton (Stock photo)

well that is about it for today then, Gervase has headed back home to Leanne, and I am now going to settle down with a coffee and get this journal finished but before I do I would like to mention that There is a young man named Tom Coleby who is cycling with 4 of his friends from John O,Groats at the top of  Scotland to Lands End on the south western tip of England, a Total of 1000 miles over 10 days.  They are cycling in aid of Cancer Research but Tom is cycling in aid of the Myositis Support Group as his Mother Lesley Coleby has Myositis, some of you may Know her through the "Myositis Ramblers" group on Facebook.

Tom and Friends at John O'Groats

So Far through his Just Giving page tom has raised in excess of £3,160.00 so well done Tom . Here is the link to Tom,s "Just Giving Page"


Well Tom and his friends are now on Day 3 of their ten day journey and I am sure that we wish them well and to say a big thank you to Tom .

Lands End, Cornwall

Well that is about it for today so until Tuesday I will say.........................