Friday, August 15, 2014

Another myositis Roller Coaster Ride.

So believe it or not We are at Friday, My last Journal was on Monday so where has the week gone, well it has been one hell of a ride. Good job I know what was happening and go grab hold for the ride in the early stages.

A Typical Roller Coaster ride
For those of you who read my Journal on a regular basis you will see that from Wednesday last week up until last Sunday, I was chugging around like a Formula one driver on my rollator and it was not long before the myositis got really pissed of with me and decided take back control again, ( I think my Myositis is a bit of a control freak),

Do Not Let Myositis Win
Anyway as you will see from Mondays Journal I was feling a bit fatigued, and come Tuesday I could hardly keep awake, I ached all over especially my upper legs and thigh,s and so I decided that I needed to up my Prednisolone from 5 mg every other day to 10 mg a day until the weekend to halt it in its tracks, I have been slowly tapering down on my Prednisolone and am on 5 mg alternate days, but at that low dose I just can not function so I am hoping that when I see my Neurologist on the 18th September that he will allow me to increase my prednisolone back up to 10 mg daily as that is a dose I can function on, and also I need him to arrange a Adrenalin Insufficiency test to see if my Adrenalin gland is producing Corticosteroids after being so long on the Prednisolone and taking my age into concideration.
That Question got my Consultant Confused
The Other Thing I am waiting on is to see my General Practitioner on the 2nd of September to see if she has (1) got the result of the x-ray on my Knees and (2) to see if she has found out why my Calcium Supplements were stopped at the end of 2012, and also my B12 supplement stopped, Both were stopped by my dietician and my GP cannot see why they were stopped seeing as I was on high dose Prednisolone at the time.
My General Practitioner  (GP)
 The dietician stopped my Calcium and B12 when I got back to eating a soft lump,s diet after being almost 10 months on a Puree diet after being treated for Chronic Dysphagia, after having swallowing problems which was the start of the Dermatomyositis Journey, she also stopped my Vit D and Vit C and Strontium Ranelate at the same time.
Could this be a sympton of Dysphagia Doc
I bet you are all sat here intrigued and thinking good grief don't frank rabbit on, well "yes", "yes I do", it helps to pass the time, but seriously it is amazing how Myositis can take you from a high spot to a low spot in a matter of a day, anyway after sleeping through most of Tuesday I slept pretty well on Tuesday night and was feeling brighter on Wednesday Morning, although still having trouble with my legs and so I phoned Pauline to see if she was happy about taking me out shopping as I could not do to much walking so would need to be in the wheelchair most of the time but she was happy to take me in the wheelchair and Gordon came shopping with us as well so in the end it was a nice day out down the city centre, Gordon pushed me in the wheelchair around town and as usual we got a Taxi there and back so it was a good day and we had a nice Coffee in the cascade shopping centre as well.
Gordon and Me sitting in the Precinct in the City Centre.
Mine and Pauline,s coffee,s in Boswell,s in the Cascade shopping Arcade.
so there we are Wednesday was a good 3 to 4 hours out in the Sunshine in Portsmouth city Centre, I think I made the right decision to stack with the wheelchair today. The afternoon and evening went well and again apart from watching Tv and drinking coffee nothing much happened, went to bed at about 10.30 and had a not to bad night, and thursday I was feeling so much better although still feeling achey in the legs and knees, I was not feeling so fatigued, and so I took 10 mg of Prednisolone again this morning and it is obviously doing the trick, again it was a day of rest apart from the phone call to the Council Tax department  This is a long story but I will give you the shortened version, this is where my tolerance or lack of shows up.

Although I consider myself efficient in the use of technology I refuse to be dictated to by Public offices to insist that I use technology to pay my Due,s. I have no issue about Paying my Council Tax, but as I am paying the local Authority for a service I expect to receive a service, therefore I will pay my Council tax Monthly in Advance in Cash at the local Civic Office, some times though I find that it is not possible to get there so I phone up and pay over the telephone by giving details to a person in the Local Tax office, However due to the cut backs in the number of staff it is getting more difficult  to get either connected or to speak to anyone, however that was the case this week, as it happened I missed last months Payment so this week I get a letter saying I am in arrears for July and August so I think OK, I will phone up and pay, and here is where the fun starts and my tolerance wears thin.
Not a Happy Chappy
Well I am on the phone waiting over 45 minutes before someone answers and while waiting I keep getting recorded messages saying " you can contact us on our email @" "You can pay on our automated phone line", etc, anyway eventually I get a advisor who has obviously had a bad day but her "biggest mistake was by talking it out on Me." her reply to me saying that "I had a letter saying I was two months is arrears  and it was because I was  unable to get down to Pay so I would like to pay it now was"well you could have paid it by check, Well if I can not get out to go down to pay at the office, I cannot get out to post a letter. I think that upset her as She put the phone down on me so I will go in and pay at the office on Wednesday when I go shopping with Pauline.

All I wanted to do was pay my Council Tax by Debit card, If I pay online by Credit card they put an extra charge on the card, and I refuse to pay by Debit card on line as you get more protection for online payments by using a credit card.

Oh well I really must not let people wind me up but she started off on the wrong foot and the wrong attitude.
That was hard Work
Well the rest of the day was spent resting before having dinner at 6.00 and going down to see my son Gervase and his wife Leanne for the evening , Leanne,s dad "Dave" was also there and so were 4 of the cats
After a good Evening and I was back home by 9.30, and in bed by 11.00 and had a decent nights sleep and so here we are at Freaky Friday.

Woke at about 8.00 am As Gordon will be down this morning about 10.00 to help me with my Friday Bath , I have my breakfast and then take my 10 mg of Prednisolone, I must say that I am back almost to where I was on Saturday, so I will drop to 5 mg daily for the weekend and then on Tuesday back to 5 mg of Prednisolone on alternate days..

Well Gordon arrives at 10.00 so we have a coffee and then he Gives me a nice Haircut, and I must say it feels so much better to have some of my hair trimmed as it is so fine these days and I lose some every time I comb it.
Thank you Gordon

Once I had had the haircut, Gordon helps me into the bath and also helps me out as well, and then I feel all clean and Sparkly again, it feels so nice after having a nice soak in the bath, during the week I have strip washes, as I cannot get into and out of a bath that easily even though i have a bath step, rails and seat.
Enjoying a Bath
once I have had a bath we have a chat and I get shaved and dressed and then we go out to get a KFC and also some milk and honey and a daily paper, once back home Gordon makes his way home and I settle down to take my Methotrexate and then start to get to work on my daily Journal for the lsat 4 days.
Time for Methotrexate
well that is about it for another week, Back to 90% functioning so time to get this journal posted and then a nice restful night of listening to classical music and reading a bit about Portsmouth in World war One. so until the next time I will say


  1. I wish I could have your outlook. You sound like a lovely man. Bless you.

    1. Thank you Coco61, it is the way I have been since I was diagnosed in 2011 with Dermatomyositis,