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

x-ray and coffee by the sea

Feeling Like Crap

Well what do you know, here we are on the first of August and not only that it is Freaky Friday. so an interesting day ahead of me today, first of all I had a very bad nights sleep, kept waking up and then dropping of to sleep until about 4.30 when I eventually got to sleep but then slept through until about 9.00, so not good as Gordon comes down on a Friday to help me have a bath and also today he is going to take me to St Mary,s walk in centre to get my Knee x-rayed.

Pauline on the Phone

anyway make a coffee and then sit and text Pauline to let her know all is Ok but that I am running late, as I am sending the text Pauline phones to see if all is Ok as I had not text her, anyway she got the text as she was phoning me, anyway we have a chat and I say that there is no rush for gordon to get here today as I am all behind, "in more ways than one" anyway after we have spoken I take my lansoprazole before getting breakfast in 30 minutes so log on and check face book and post the late edition of Thursdays daily Journal.

Pharmacist

Once I have checked on Facebook and posted yesterdays journal, i have some breakfast and then about 10.00 Gordon arrives so we have a coffee and then I have my Bath. Once I have had my bath I then get dressed and we sit and have a chat until about 11.30 when we get in the car and off we go to to drop my repeat prescription of at Rowland,s chemist so that it will be ready to collect next Friday and then it is off to The walk in centre to get my Knee x-ray done. there is up to a 45 minute wait but in fact I get called after about 25 minutes so not to long a wait. so once that is done we leave and Gordon drives down to the sea front at Eastney which is the quiet end of Portsmouth and we have a coffee and a snack at the tea bar there.

It is very quiet down this end of the seafront as it has no facilities here and is a bit of a "Natural State" and also most of the people will be at the other end of The sea font at Southsea  common as today is the first day of the Three day Southsea Show.

Looking East along southsea sea front towards Eastney.

Looking Out to Sea across the solent

Gordon Enjoying a snack and a coffee

Looking West along the front  at the Tea Bar.

after we had enjoyed a coffee and a Snack Gordon I got Gordon to drive down to the bottom of Locksway road where the Thatch house is to show him where the lock gates were and the locks where the canal came into Portsmouth from Langston harbour in 1823 , the canal was abandoned in 1855.

The Remains of the canal entrance looking west.

The remains of the Lock at the entrance of the Portsmouth Canal.

After that we head back home, it is now 2.30 so we have a coffee and then Gordon makes his way home and I start to get todays journal done.

enjoy a cat nap

So all in all it has been an enjoyable afternoon, it was nice to be out and about and also nice to be able to visit the old lock as I am very passionate about the local history of Portsmouth. anyway I need to get thous Journal posted and then a lie down for an hour before thinking about getting dinner ready, although it was an enjoyable afternoon it took it,s toll on me and my legs are now feeling very achey and i am worn out so an hour,s cat nap will do me a power of good.

 

So now to take the Methotrexate and enjoy the rest of Freaky Friday so until tomorrow I will say..............

Time is flying By.

I just cannot believe that it was last Thursday that I wrote my last "Daily ???" Journal it seems to be heading to a weekly Journal, still the good thing is that I have just about made up my mind what spec I need for my new larger screen computer so once that has been purchased I will hopefully be back writing Journals on a Daily Basis. so all I can say is thank you for being patient with me while I get my vision and computer sorted and welcome to................

Friday 20th September 2013

Much like any other Freaky Friday, Friday came and went I slept pretty well on Thursday night and was up about 8.30 on Friday morning. after sending the morning text to Pauline I got my breakfast and then settled down to catch up with the news on the local radio, Pauline phoned to say that all was ok with her, Gordon had spent the night over in Salisbury with his son, and he was due back after work this afternoon.

Talking to Pauline on the phone

Once I had finished talking to Pauline I got myself dressed and then took a stroll with the rollator around to the local co-op store to get some milk and the daily paper before having a stroll down to the eastney health centre to hand in my repeat prescription form and then headed back home it was a 3 mile round trip but I took it easy and enjoyed it. Once back home I settle down with the radio and to read the paper and get the crossword done.

Doing the Crossword in the daily paper

The rest of the day went by pretty much as it usually does, Gervase phoned about 1.30 to say he was at Leeds railway station ready to get his train home, he has been up in leeds since Tuesday with work , so is looking forward to getting back home to leanne.
I got dinner ready for 6.50 as usual and then after dinner settled down to watch the TV and to take my 15 mg of Methotrexate, and then was ready for bed at 10.30.

Its another Freaky Friday

Saturday 21st September 2013

and today dawned bright and sunny and also today is Myositis Awareness Day

So Saturday started like all my days with texts, phone call,s and breakfast. It was a decent nights sleep again last night, it is funny but since I have curtailed the amount of time spent on my laptop I am certainly sleeping better and am not having the headaches and vision problems that I was getting, so that is a positive for my Eye,s.....

Gervase Phoned at about 11.00 to say that he will be round to take me shopping at 12.00 he will be going to Fratton Park at 3.00 for the football as he is a Pompey season ticket holder and on the weekend that Pompey are playing home at Fratton Park we go shopping on the Saturday as I only live about a 5 minute walk away from the football stadium.

Frogmore road entrance to Fratton Park

Gervase arrives at about 11.50 so we decide that due to the  problems of the increase in traffic on match days around Portsmouth which is a city of mainly victorian terraced houses and narrow victorian roads that we would walk down to the Bridge centre at Fratton and go to Asda. It is about a mile away so I said that I will walk with the Wheelchair  and then when I have had enough Gervase could push me as it happens I walk all the way there, around Asda and all the way back home pushing the wheelchair so really pleased with that, it means that I walked 3 miles on Thursday with the Rollator and 2 miles Saturday with the wheelchair so am really feeling positive at the moment.

The Bridge Centre and Asda at Fratton.

Well once we were back home Gervase went off to meet his mates for Football and I made a coffee and then went for a lie down for an hour or So. Gervase came in on the way home from Football at 5.00 pm, Pompey lost 0-1 so not a happy chappy.

Framed print of the "Pompey" Sailor Mascot

Anyway he collects his shopping and then makes his way home to Leanne while I get my dinner cooked and then settle down to an evening of TV.

Sunday 22nd September 2013

And so we go into Sunday, legs are a bit achey after yesterday but I slept well so a couple of co-codamol to ease the pain and I am fit and ready for a busy Sunday. after all the usual bits and pieces I go round to Tesco express to get my daily paper and some milk and then back home to settle down with the paper and to catch up on saturdays recordings of Bonanza on the sky box.

Bonanza

well Pauline and Gordon are coming down later this morning at about 11.30, anyway at 11.00 I get a phone call from Pauline,s sister Fran to say that her, Colin and Stewie are down in Southsea and are going to come in and see me, so that is a nice surprise so they arrive about 11.40 and Pauline and Gordon arrive at about 11.50. so it s a flat full of visitors and it is a really great time to see them all here, however Fran, Colin and Stewie make a move at about 12.10, and them Pauline and Gordon are going to sort out my front forecourt and also the back yard to get everything trimmed back and tidied up for the winter. They are here for a good 4 hours and I help with what I can which really is not a lot but at least I can make the teas and coffee,s, me and gordon go over to B&Q to get a couple of shrubs to put in pots and also a rose bush to plant in the front.

The Front courtyard with new pots and rose planted

A Tidy and clean back yard

Once it is all done Pauline and Gordon head back home and I go and relax in the recliner before getting dinner at 6.30 and then watching TV until bed time at 11.00 pm.

Monday 23rd September 2013

Not much to say about Monday, It was a great nights sleep on Sunday night and Monday was a very warm and sunny day, I was up at 8.30 and after the normal bits and pieces took a walk around the block and along Devonshire square where I got my Paper and milk from the local co-op before heading back home to spend a little bit of time giving the front courtyard and back yard a sweep and a hose down before settling down with the paper and some TV.

Devonshire Avenue Portsmouth

At 2.00 I get some Sardines and Crispbread for lunch before settling down to watch a couple of old episodes of "Gunsmoke" which I recorded on Sunday afternoon.

Gunsmoke with James Arness 1955

at 6.00 I do myself some Chicken in White wine sauce with Brown rice for dinner and then settle down to watch emmerdale at 7.00 and then at 9.00 it is Doc Martin so that is a good relaxing evening and then off to bed at 10.30 after the 10.00 News.

Emmerdale 

Doc Martin starring Martin Clunes

Tuesday 24th September 2013

And so here we are at Tuesday and I have caught up with myself. well here we are on a very bright and sunny Tuesday in the middle of September. well it is going to be an interesting day today as I am going to a meeting of the " Health and Social Care overview Group" at the Frank Sorrell centre Southsea. it is at the rear of Eastney Health centre where my doctors surgery is, It is about 1.5 miles from my flat and I am going to take a slow stroll down with my rollator and see how I go, I walked it last week when I took my repeat prescription down.

This is the Rollator that I need

anyway after texting and speaking to Pauline and also having breakfast I get myself ready and then at about 9.55 I set of to take a gentle stroll down to the Frank Sorrell centre, I get there at about 10.20 so it has taken me about 30 minutes to walk the 1½ miles. anyway It was a good meeting and I really enjoyed it and will enjoy being involved in the community health and social care program. I have also been invite to take part in a meeting on Thursday which is the Portsmouth Disability Forum, Open Access Forum which focus,s on issues relating to physical access to services and transport for all disabled people. "What have I let myself in for ?"

Well at least it will get me out of the flat and get me meeting other people and also to get involved within the community, once the meeting had finished and I said my goodbye,s I went round to the health centre to pick up my prescription for prednisolone and Methotrexate which I will get made up tomorrow, and then as I have to go tomorrow for blood tests I also arranged to have my Flu vaccination tomorrow as well, so that will work out well, I then head back home collecting my paper and some milk on the way. once I am back home I make a coffee have a sandwich for lunch and then settle down to get this journal written.

Writing my daily Journal

well it has got warmer and sunnier as the day has gone on, it has been brilliant blue sky today and a temperature in Southsea of 24C/75F so a nice warm day. It has been a really great day today met some new people and walked 3 mile with the rollator so well pleased with myself, anyway it is now 4.45 so I will close this now and hopefully I will get the next journal written on Friday/Saturday so until then I will say ...............