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

Another Friggin Freaky Friday

Well here we are again and another Freaky Friday is upon us, no sooner have you got over one Friday then another one arrives, Oh well thats the way the cookie crumbles I suppose.

A Crumbling Cookie

So How did my day start you may well ask, well seeing as you asked so nicely, It started to early, I was awake about 4.30 isn for a Bathroom Break and was so hot that I went and got a cold drink and sat in the lounge for 30 minutes checking Facebook on the Tablet computer, oh what an exciting life I lead. trouble is I do find sending messages on my Tablet slow work, I must get a more modern one soon.

Why is sending messages on my Tablet so slow ?

Anyway I went back to bed just after 5.00 and woke again about 8.00, a far better time to get up. although it was one of those mornings where you feel if you could do with a few more hours in bed, but Gordon will be coming down this morning about 10.30 to help me so I can have a bath, he will also put clean bedding on the bed so that he can take it with the other washing back so that Pauline can wash it over the Weekend.

Is it really time to get up ?

However, seeing as Gordon will not be here until about 10.30 there is no reason to get dressed as I can see no point in getting dressed and then getting undressed again to have a bath ( mind you if I had a bath with my clothes on it would reduce the Laundry for Pauline.) so I take my Lansoprazole so that I can have breakfast at 9.00.

No Point getting dressed until after my bath

At 9.00 I have my Breakfast , I am having toast and marmalade this morning followed by my daily 4 Prunes, after which I check on Facebook and do the Morning greetings on the Myositis support groups and the Ramblers Group, and then I go and have a shave and Brush my teeth before Gordon Arrives at 10.20

Getting a Shave and Cleaning Teeth

Gordon Arrives and we have a coffee, and Gordon goes to change my Bedding while I am having my Bath, It feels so good and after I have had my bath it is so nice to be able to walk around without being followed by funny smell !!!!!!!!

Good Job it is nearly Friday

well once I have had a bath, gordon puts the Diprobase cream on my legs and back, and I do my chest and arms, and then I get myself dressed as we need to go down to the Chemist to get my Medication and some milk and a daily paper, and then we go into a little cafe and have a coffee and sandwich each for lunch.
Once we are back home we have a coffee and then I take my Methotrexate and Gordon makes his way home to Pauline while I go for a lie down and then at 3.00 I go on to the computer and get todays daily journal written.

Taking My Methotrexate

Now that I have had the Methotrexate, it is time to rest for the afternoon, So once I have Posted this Journal to my blog to will be rest and relaxation for the rest of Friday.
Watching the News and weather it is likely that it will get quite bad here on the South Coast as the remnants of Hurricane Bertha tracks across the South coast of England so it will be a case of batten down the hatches on Sunday and Monday and possibly Tuesday. although not as severe as first predicted it could still cause major flooding and some damage especially as tree,s are in full leaf.

well that is it for today so until tomorrow I will say ................

Problems with Blogger on Wednesday Ok Today (Thursday)

Wednesday 6th August

Good Morning one and all, well today has been a good day, I had a really good nights sleepTuesday night, went to bed about 11.00 and must have dropped of to sleep about 11.30 and slept through until 6.15 this Wednesday morning. so woke up in a positive mood

Waking up in a positive mood

Well it would have been apart from when I tried to write Wednesdays Daily Journal "Blogger" was having all kinds of problems and I could not write it so I am doing it today (Thursday the 7th)

Anyway Wednesday is the day that Pauline takes me shopping, and while we are out shopping Gordon does my weekly flat cleaning, " I am so lucky to have true friends like Pauline and Gordon", anyway I stay in my dressing gown while I have breakfast and then get myself, washed, shaved, abluted and then get dressed ready for when they arrive, with misty the Labrador.

Do I need a shave ?

Pauline and Gordon arrive about 11.00 o'clock , so I have only just got myself ready anyway they have brought Misty, who comes bounding into the kitchen, and promptly rolls over on to her back to have her tummy rubbed, this seem sot have become a ritual, every time she sees me.

My Doggy Friend "Mist

Well we have a coffee and a chat and then I phone for a taxi, and me and Pauline head off down to Portsmouth city centre, to get the shopping done while Gordon stays at the flat with Misty and gets the weekly cleaning done for me.

Come on Gordon, no slacking now

Once we get down to the city centre, I drop a prescription into Boots the chemist to collect later and then WE go into WH Smith the book shop as Pauline needs to gat a couple of things including a game of Scrabble, and I buy a couple of Book,s about Portsmouth in the First and Second world wars, to compliment my collection of Local History and local military history.

Purchases from WH Smith.

once we had come out of WH Smith,s we made our way into the Cascades shopping arcade. it is not very busy today and we make our way round to Mark and Spencer to get the food shopping.

The Cascade,s shopping arcade.

not for the feint hearted

once we had got our shopping from M&S we went and had a coffee from the coffee bar in the Precinct before heading back into boots to get my Prescription and to get some more Tena for men., before heading up to Gregg,s the baker to get a couple of steak slices and sausage roll,s to take home for lunch with Gordon..

A well earned rest 

I phone for the Taxi and we head back home to have lunch with Gordon, once home we get the shopping put away and then have a coffee and lunch before Gordon, Pauline and Misty head home, and I settle down in the recliner in my nice clean tidy flat to get this Journal written which as you know did not happen so I watch some TV and listen to the radio instead before having a nice  M&S Potato and egg salad with some corned beef.

The other thing I noticed is that we had some heavy rain overnight on Tuesday and early hour os Wednesday, and I do not know what happened but the bushes in my back courtyard a growing like mad, Gordon only cut them back a few weeks ago, Oh well that was Wednesday and now to get Thursdays Journal started.

My Back courtyard and That bush reminds me of my hair on a good day 

Thursday 7th August

Well here we go with Thursday, it was not such a good start to the day today, i woke at about 3.30 this morning with a really painful right shoulder, I had to get up and rub some deep heat in to it and that seemed to settle it down, I should have used a wheat bag but was to grumpy to mess around with that anyway after about an hour the shoulder had settled down so got back to sleep, and woke again about 7.00 am.

Not the best of starts to the day.

Anyway ashen I woke at  7.00 I went and made a coffee and then sent the text to Pauline to let her know I was up, and then at 7.45 I made my Breakfast, I had wheatabix with honey and prunes today,as I needed something quick and easy as I have an appointment with "Debbie the friendly vampire today at 9.40" so need to get a move on and get the taxi booked and then get myself washed and dressed.

Phoning to book a taxi in my best telephone manner.

Well It is now getting on for 9.30 and i am all ready for when the taxi arrives, Now A question for you all.:
WHY when you I am  all dressed and ready to go on a tight time schedule do my Bowels decide to talk to the prunes and arrange an evacuation, Funny it is not, Well it is really for the timing , but I won't admit to that. Oh well what will be will be, good job it is one of my regular taxi driver today at least he understands.

Thats Better

Well once that little episode is over it is back to normal so into the taxi and off down to the Eastney health centre to see Debbie and give my blood for my 4 weekly blood tests. Debbie is quite good at taking the blood, well she should be as I have been having it taken every 4 weeks for the last 3 years , anyway after I see my Neurologist we will be having the blood tests every 8 weeks.

Debbie The Friendly Vampire nurse.

well once the blood taking has finished Debbie ask how Pauline is and how her surprise party went, and is pleased it went well, and so I make my way home, so that really is about it for today, once indoors I make a coffee and settle down to get yesterdays(Wednesdays) journal written, I then get a jacket potato with Tuna for lunch, read the paper and do the easy crossword and then settle down to write todays Journal.

Franks Daily Dermatomyositis Journal in its Prime.

So here we are at 3.20 in the afternoon and I amin need of a lie down so I am going for a lie down and a cat nap for an hour and then the Journal will be posted and then I can start thinking about dinner tonight, it will be  Sea bream fillet with a cheesy mash, Excellent

Enjoying a cat nap

Just heard on the weather that we are expected to get the tail end of Hurricane Bertha reaching us on Sunday, it is tracking across the atlantic from America, it is being downgraded as it nears the coast of Northern Europe and the UK. although it is not going to be as severe as first thought it is fiorecast to be very wet and extremely windy through Sunday and Monday,

Prepared for Sunday and Monday

so until tomorrow I will say........................

and welcome to another Thursday.

And has anyone seen Pauline ?????

yes folks it is Thursday again, Oh how the week flies by when we are having fun, what with a trip to the seaside on Monday, The vampire Tuesday, and yesterday the Doctors and now today the Lost "Pauline" life is full of Fun.

Wednesday 28th August 2013

Well Wednesday dawns bright and cheerful, and I have to get up earlier today as I have my appointment with Dr Tyrrell my long standing GP. I made an appointment to see him as I am finding that it is difficult to breath in this hot and humid weather we are having here in the UK this year and also Dr Tyrrell is retiring in September so I need to drop a thank you card in to him as well.

Happy Retirement Dr Tyrrell

 However I am up at 8.00 and into the lounge with a coffee where I text Pauline, She phones back to say her and gordon will be down at 9.30 and Gordon will take us to the Eastney health centre for my appointment at 10.00 and then he will go and start the weekly flat clean while Pauline and I go down to morrisons to get the shopping.

Once I have finished talking to Pauline I have a shower and then get ready for when Pauline and Gordon arrive/ They arrive about 9.30 so we have a coffee and then Gordon gets the wheelchair into the car and then we are off to the doctors, where Gordon Leaves us and heads back to the flat to start the cleaning.

Eastney Health centre (Stock Photo 2012)

We do not have to wait long to se Dr Tyrrell, he checks my temperature and also my chest and blood pressure and it is al Ok so agrees that it is the humidity that is causing me to find it harder to breath, anyway I will see Dr Gibb next Thursday and he will probably arrange for my yearly PFT the last twice it has been about 84% so not to mad for my age and as an ex smoker. anyway I wish him luck with his retirement and look forward to meeting his replacement, anyway as I thought he prescribes me a Ventolin  inhaler with a Aerochamber and so off we go to get that at the chemist across the road before phoning for a taxi to take us down to Morrisons at the City Centre.

Lloyds Pharmacy opposite Eastney Health Centre. (Stock Photo 2012)

Ventolin Inhaler with Aerochamber

Once we are down at Morrisons, we have a coffee and then get the shopping done before getting a Taxi back home, by this time it has just gone 12.00. Once home Gordon has got my flat nice and clean and tidy as usual and so we have a Sandwich for lunch and also a coffee and a good chat before Gordon and Pauline make there way home about 1.30.

You have done well Gordon. Thank you

At 2.00 I go for a cat nap for an hour and then at 3.00 I make a coffee and get the vegetable prepared for dinner before going into the lounge and getting some paperwork sorted out before dinner at 6.00 and settling down for the evening with the TV.

Here is the Wednesday Update on Tom Coleby,s Cycle ride by his mum Lesley Coleby

Lesley Coleby

Tom's John O'Groats to Land's End cycle ride - Day 6. The boys have safely arrived tonight's destination. They are staying between Warrington and Chester with Sophie, a good friend from University. She (or her parents!) are kindly putting them up for the night. I hope they are prepared for 5 sweaty, very hungry tired boys. I also hope they can borrow the washing machine, as I don't like to think of the state of their two sets of cycling kit! It was a long day today, 100 miles, it went well although a slow first 50 miles as Ed had a couple of punctures and wheel issues which meant they didn't arrive until gone 6pm. I gather the roads have been busier, as they have cycled through/near several big northern towns - Lancaster, Preston, Wigan and Warrington. Warrington is not far from Liverpool (Beatles fame!). It will be great for them to see a friendly face and Sophie is a lovely bubbly girl so I'm sure she will boost their spirits. Tomorrow they will be cycling not far from the Welsh border all the way down from Chester to Hereford. James's parents, who live in Cardiff, Wales, are hoping to meet them tomorrow night, so another boost hopefully. Keep the boys in your prayers, an accident can happen at any time, especially in the busier routes. Until tomorrow ........

So Far Tom has raised over £3,600 through his just Giving Page. Well Done Tom

Tom and Friends crossing the border from Scotland to England.(Tuesday ?)

Thursday 29th August 2013

Well after another decent nights sleep, waking once at 3.30 for the bathroom and also a glass of water I eventually woke at 7.30 where I got up and made a coffee which I took back to bed and lazed listening to the radio until 8.30.

Lazing in Bed

 At 8.30 I get up and make my way into the lounge where I text Pauline and then get some Porridge for breakfast, Pauline texts back to say she will phone me when she gets indoors as she is out with Misty on their morning walk. Once I have had breakfast I was up the breakfast things and then settle down to watch "Heir Hunters"  A Genealogy program on BBC 1. about 9.45 Pauline phones to say that all is Ok and that it is another hot day .

Walk don't Run !!

well once I have spoken to Pauline and The "Heir hunters has finished I get the Roland the Rollator out and take a walk round to the Tesco express to get the morning Paper and then have a wander into Milton Park where I sit in the fresh air to read the paper for 30 minutes before heading back home about 11.15.

Tesco Express (Stock photo 2012)

Milton Park (Stock Photo 2012)

Once back indoors I make a coffee and settle down to do the crossword in the paper and then watch an episode of "The Father Dowling Mystery,s" on the TV before going for a lie down until 2.00 when I get a Strawberry complan and a Banana for Lunch.

Father Dowling Mysteries 1987 - 1991

As I am washing up the lunch things, Gordon Phones to ask of I have spoken to Pauline this morning. as he has phoned her Mobile and Home phone and she is not answering. Gordon is up in Salisbury Today and Tomorrow , so I phone Pauline several times on both phones and I am thinking of getting a taxi over to their house in  waterlooville when my phone rings and it is Pauline, she went out to the local tesco and forgot to take her mobile, which is amazing as she is always telling me that I need to take my Mobile if I go out, anyway panic over and I tell her to phone Gordon as he is worried.

When you go out shopping take your Mobile with you

well after all that excitement LOL, I decide to make a coffee and get this journal written, so the rest of the day will be spent relaxing in front of the TV and having dinner at 6.00.tonight I am having a smoked loin of Cod cooked in butter with a jacket potato with grated cheddar cheese "Yummy, Yummy" Naughty but nice and then I can look forward to Freaky Friday tomorrow.

Smoked Cod loin half price from Morrisons

So there we are then folks so until the next Journal on Saturday I will say..............