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

Rollator,s are made for walking.

But Unfortunately my Muscles are not, I have certainly overdone it the last Three days so need to re-assess my trips out with the rollator.
Anyway it is now.........................

So at least time to have a rest and to let my aches and pains subside a little bit before Sunday comes around and I go shopping with Gervase. anyway I thought I would write today about my last three days of overdoing it. The one thing I have realized is that although the brain is telling me that I am ready to rely less on the wheelchair and Taxis my body has different ideas.

Since I have had my rollator I have found that it has given me more freedom to walk further than I could with a walking cane, primarily because it gives me more control over my balance. However I think that walking further around the block to get my paper in the morning, and walking 2 to 3 miles to Asda or the Health centre are two entirely different cases. 

Anyway although I am finding that my leg and thigh muscles are aching today I am sure that with rest over the next couple of days that they will settle down suffice to say that Lessons have been learnt, all be it the hard way so in future it will be walk one way and Taxi the other. so enough said, but at least I did it.

So let me tell you about the two meetings that I attended this week as I have decide that I need to be more involved in the community through the Portsmouth Disability Forum (PDF) which is based at the Frank Sorrell Centre in Prince Albert Road, Southsea.

Frank Sorrell Centre, Prince Albert Road, Southsea 

The meeting on Tuesday was the Health and Social Overview Group (HASCOG) this group meets one a month. HASCOG, is a group of Health and social care users who meet to discuss the issues that affect our lives as we use these services, it covers concerns about Health Services, Social care services, Well being and Independent living, we discuss the issues with these services, invite guest speakers and work with similar groups.

HASCOG Logo

It was a very interesting introduction for me and I did enjoy it and also the dedication of the other members there. The Guest Speaker was from the "Healthwatch Project" Portsmouth, which is a local branch of a national  organisation in Portsmouth that helps to improve health and social care service,s in Portsmouth.

Healthwatch Portsmouth Logo.

We also discussed other aspects of health care and then the meeting ended and I made my way back home, so a very interesting 2+ hours.

Portsmouth Disability Forum Logo 

Thursdays meeting was also at the Frank Sorrell Centre, this time it was a meeting of the 

PDF Open Access Forum. This forum focuses on issues relating to Physical Access to services and transport for all disabled people and how well or not they are working for disabled people. This was attended by a larger number of people than Tuesdays meeting and there was also another new comer like me so that was good. 

This meeting looked at any problems relating to physical access for all disabled people in Portsmouth, an example was the problem of taxi,s and vans parking in designated bus stops which prevented wheelchair users being able to board a bus as the bus had to stop outside the designated area where the kerb,s were higher, also the access to the museum in Southsea for wheelchair user,s and then looking at the proposed plans for the Hot Walls Development and liaising with the planning department to make suggestions for access for disabled persons.

Architects plans for hot walls development.

This was a very interesting meeting with lots of discussion on a variety of issues from writing to the local council about the amount of advertising A Boards on narrow pavements, to illegal parking on pavements or across dropped kerb,s, to the person who was assessed as being "To Blind" to have a Guide dog !!!!!!!!. so looking forward to the next meeting in october.

so there we are that was my busy three days, two days of Meetings and then a day of shopping on Wednesday down the city centre with Pauline, no wonder my poor old muscles are going on strike, but if there is one positive in all this exercise and movement it has woken my bowels up so have not had to rely so much on Fybogel and Laxido.

Fybogel is good for you

It makes you big and strong

it helps to make your motions soft

and to emit a healthy pong

So on that note I think I will make quick retreat and get ready for getting my dinner prepared for tonight and then it will be time for the dreaded Methotrexate. so I will get this Journal posted and say.

and hopefully the next journal will be a little bit more interesting for you,

Oh Doctor I'm in Trouble..............

Oh goodness Gracious Me..............

Hello again one and all and welcome to Thursday 19th September.

it has been an interesting time since my last Journal on Monday, so I will start with the events of Tuesday.

Tuesday 17th September 2013

As most of you know I have scaled down on the frequency of my daily journals due to problems with my Vision using a 13" macbook pro. Although I can zoom in on the text it the constant staring at a small bright screen that has been giving me problems along with frequent head aches above the eye,s. If I do not spend extended time on the computer this problem does not arise, however I decided on Tuesday to Phone my GP in the Morning at 9.00 am, and spoke to Dr Lake who arranged an appointment with another GP Dr Eggin at 11.45 that Morning.

Speaking to Dr Lake

After I had spoken to Dr lake I spoke to Pauline on the phone and let her know and also had a chat with Gordon, before getting some cereal for breakfast and taking my morning dose of Laxido.

"Laxido" for all that is stubborn and refuses to move

after breakfast and doing the washing up I get a wash and shave and then get myself ready to go to the Eastney Health Centre to see Dr Eggin. Dr Eggin is the replacement Doctor for my long standing Family GP Dr Tyrrell, who retired last week, so I was a bit apprehensive about seeing Dr Eggin, but I should not have been, she turned out to be a very competent GP and had been fully versed on my Myositis by Dr Tyrrell and also by Dr,s Lake, Richbell and Proctor, in fact Dr Tyrrell had even passed the book on Myositis that I had brought for him 2 years ago.

The book I Brought for Dr Tyrrell

Anyway I got a Taxi down to the Eastney Health Centre at 11.30 and reported to Reception I was Number 11 so as number 10 was in with Dr Eggin, then I was next, I only had a short wait and was called in at 11.50. Dr Eggin listened to what I had to say about what was happening and then carried out a series of tests my blood Pressure sitting and standing was OK, My Blood sugar level was normal, My Blood tests from two weeks ago were all OK ( Or as Dr Tyrrell marked, "Normal for this Patient") She then checked my eyes and carried out several vision and balance tests and also checked my ears, and  came up with the diagnosis that she could see no major problem apart from the cataract that was probably causing problems with the vision ( which is what I suspected) but she also said that the headaches were probably a combination of the brightness of the screen on the laptop and the fact that the muscles in my neck were weakened and was not able to support my head properly while using the laptop in the recliner so she has prescribed 2 x co-codamol if I find my neck becoming painful ( which I had noticed over the last week or so.)

A Thorough examination

So that was a good and positive visit to the Doctors so back home in the taxi and the rest of the day was spent watching TV and having dinner and leaving the Computer alone. anyway look forward to November when I get my new computer and also a new office chair so that I can work from my desk, will start checking that out tomorrow.

Wednesday 18th September 2013

well a decent nights sleep last night and got up about 8.30, Pauline and Gordon will be down about 10.30 this morning and then it will be down to the city centre to get the shopping. Today is the anniversary of My Fathers Birthday and also my Uncle Fred ( Mums Brother) Dad was born on the 18th September 1914 so would have been 99 this year and Uncle fred was born on the 18th September 1918 and would have been 95 this year

well after texting and speaking to Pauline and Having Breakfast it was time to get myself ready for when Pauline and Gordon arrive. in fact they arrive about 10.20 and I am not quite ready but almost so that is not a problem anyway, one I am ready I get the Rollator ready and Phone citywide for a taxi to take Pauline and I down to Commercial road and then once we have left, Gordon can do the weekly clean on my flat.

Commercial road precinct.

 Once down town we go and do the shopping that we need to do and also have a coffee before doing the main grocery shopping in Tesco,s before getting a Taxi back home at 1.15. Once home we get the shopping put away and then have a coffee, a chat and a sandwich before Gordon and Pauline head home and I settle down to check out office chairs and maybe a new desk as well. Gordon had done a god job with the flat cleaning as usual so thank you Pauline and Gordon for all your Help.

Nice one Gordon

Thursday 19th September 2013

Another excellent night last night, well after listening to Dr Eggin on Tuesday I have not suffered any headaches or vision problems, I cannot wait until November to come around so that I can get my new Computer. Until then I will be spending less time on the Computer, although I have found a way to write these blogs and facebook posts by using the "Siri" facility on my iPad. this allows me to verbally dictate what I want to write I can then go into the blog on the computer and add the images and that is it,  It took a bit of getting used to the speed of dictating and I have to manually make a very few adjustments by hand but I am getting better at it and it means I am not staring at a screen for a long time.

So today I have also been looking at what Office chair to get and also looking at Desks to compliment the new iMac when I get it.
It looks like the desk and chair will be from Ikea. Just can't wait now.

Ikea Hemnes Desk with add on Unit

Ikea Malkolm swivel chair

Well that is about all my eyes will take today as far as the computer is concerned.
After my appointment with Dr Gibb my Neurologist on the 5th of this month and my Pulmonary Function test last Friday, I today received a letter from Dr Gibb,s Secretary to say that my next appointment is on the 5th March 2014 that is 6 months time the same as the last one so I would presume that my PFT was OK.
So until the next blog which I hope to write on Saturday " Myositis Awareness Day" I will say...................

The Days are going by far to quickly.

So here we are again and it is Monday already,  I wish someone could explain to me where the days are going, Because I have not got a clue.

It is almost a week since I last wrote my "Daily Journal", Not so much a daily journal now I am afraid though, although it will change back to being written and posted daily once I have got the new computer .

When Frank gets his new computer

Wednesday 11th September 2013

Not a great deal happened last week it was really much like any other week, on Wednesday Pauline and Gordon came down and while gordon spent a couple of hours cleaning the flat, Pauline took me down to Morrisons to get the shopping.

Morrisons Portsmouth City Centre.

Once we had got the shopping done we got a taxi back home, and after getting the shopping put away we had a coffee and a chat before Pauline and Gordon made their way back home, as usual gordon had done a good job on the flat cleaning as usual.

Got that one wrong Gordon

 Thursday 12th September 2013

Thursday was a normal day as far as normal goes for me spent most of the day as usual listening to the radio or watching TV in between cooking and washing up and then an early night on Thursday ready for my trip to the Queen Alexandra Hospital for my Pulmonary Function Test on Friday.

Friday 13th September 2013

Queen Alexandra Hospital, Portsmouth.

The appointment for my Pulmonary function test went pretty well. there was a young trainee along with a physiotherapist that did the tests and the results will be sent to Dr Gibb my consultant. then what he said at our meeting on the 5th, is that when he gets the results of the PFT we will then look at the treatment going forward,

so that was about it for Friday except once I had got home it was time for the ............................. Methotrexate. because Fridays is know by me as Freaky Friday.

Anyway I leave it until after Dinner before I take the Methotrexate so that about the time the Methotrexate kicks in I am off to bed that way I sleep through most of the affects, as it always makes me feel yucky for a day or so.

Saturday 14th September 2013

Saturday started as usual with me having a lie in and then going through the usual daily routine, and I was looking forward to Saturday evening as I am going with Gordon and Pauline up to my Nephew Arron,s House in Fareham to a house warming get together, Arron and Sarah have been married for two years and have just moved into their second house as they are expecting their first Baby in October, so we are all looking forward to that.

One baby on the way 

Gervase and leanne unfortunately can not make it as they have a prior arrangement and I heard on Friday that my Brother Pat and his family cannot make it as Pat and also his daughter Melanie both have glandular fever but there was still a good turnout and we all had a good time.

A good evening at Arron and Sarah,s house warming

One thing I did do was although it was not my day for Prednisolone I did take 10 mg on Friday as well just to make sure that I was able to go . anyway it was a great evening and did not get back home until 11.00 pm so to bed at midnight and a lie in sunday morning.

Sunday 15th September 2013

Sunday was a day of resting and recovering from saturday evening. Gervase came and took me to Asda at fratton to get the shopping, it was nice to see him and he and Leanne had a good night last night.

Gervase has a busy week ahead with work as he is in London on Monday, Leeds on Tuesday, Edinburgh on Wednesday and back to leeds on Thursday and Friday so he has a lot of sorting out to do at home so once we are back home after shopping we have a chat and then he heads back home.

Monday 16th September 2013

And so to today another restful day of TV listening to the radio, Pauline and Gordon were down in Southsea today so came in for a coffee with Misty the Labrador, it was nice to see them all, we had a nice chat and a coffee and then headed back home. I have just caught up with the journal but will now get it posted on my blog as my vision is telling me it has had enough, just to say that there is now only 5 days to Myositis Awareness Day on Saturday the 21st

So until my next Journal I will say...............

Its all Nuts today for Pauline.

♪ ♪ ♪ Here we are again. ♪ ♪ ♪ 

♪ ♪ ♪ Happy as can be. ♪ ♪ ♪

♪ ♪ ♪ All good Pal's and Jolly good company ♪ ♪ ♪

Yes here we all are on another splendid sunny and warm day on the South coast so welcome to Tuesday People.

It was not a bad nights sleep last night, slept pretty well although I did wake up a couple of times during the night to use the bathroom but apart from that I pretty well slept through from 11.30 until 7.00 this morning, when I went to make the coffee and then back into bed to laze and listen to the Radio until I got up and into the lounge at 8.45. where I settle down to send the morning text to Pauline and then  watch the morning Breakfast news on the TV.

The Breakfast News on TV.

well Pauline phones and said that all is OK with them over in their new home, She slept pretty well and Gordon and Charlie have gone down to take a lot of Rubbish to the tip and I asked if she had been woken by the birds but she said the only thing that frightened her was that when she went out in the garden she saw a squirrel and ran back indoors.
so here we are then Just for Pauline.

Pauline in the Garden

With her Flowers, and Water butts

Nice flowers Pauline

And then behold she saw a squirrel

Playing with his Nuts

Are you sure it wasn't Gordie

anyway once I had spoken to Pauline I get myself another coffee and then get onto the laptop to check out my emails and Facebook, and catch up on some facebook games, before going out and getting the daily paper and some other buts of shopping, Once back home I have a banana for lunch and then go for a lie down for an hour.

Time for a cat nap.

well once I have had my lunch time cat nap, I make a cup of tea and then go out in the garden for an hour to read the paper and do a bit of trimming before coming back indoors to get todays journal written.

I hate Gardening.

well once back indoors I settle down with the laptop to get the Journal written there are re-runs of a couple of TV sit coms on ITV3 that I am watching as well the first one is "Only When I Laugh" A medical sitcom that ran from 1979 - 1982 starring James Bolam, and Richard Bowles also Richard Wilson.

Only When I Laugh 1979 - 1982

The second sit com is "Barbara" from 1999 - 2003 staring "Gwen Taylor" although it was a well watched sit com with high viewing figures it only ran for 3 series before being axed

Barbara 1999 - 2003

well there we are then, it is now 5.00 and Gervase has just tried to ring me but the signal seems to be weak or non existent, so had a text from gervase to say there are problems with the 02 signal in haywards heath so he will phone later I have tried to phone him and the signal is very weak so will catch up with him later.

Not a good Mobile Phone Signal today

Well I am now going to get this Daily Journal Posted and then settle down with Facebook for an hour before dinner at 6.00 so until tomorrow I will say........