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

and so here we are into October.

I remember writing on my last journal on Friday that the rollator was made for walking but my legs were not, well a bit of a misquote there I think it should have read "But my Body was not" as I will tell you after welcoming you all to...................

I ended Fridays Journal saying that I was going to get dinner ready for Friday evening, well I had dinner about 7.00 pm and then from 8.00 until about 9.30 I spent between the lounge and the bathroom vomiting and bringing my dinner back up (not a pretty sight), I felt so ill that I even had to phone gervase and he came round to be with me for a couple of hours, I let Pauline know and she and Gordon wanted to come down but I said that Gervase was coming round, and we would phone if it got any worse and let them know.

Anyway this went on for about 2 hours until it started to settle down at about 10.00 ish, at which time I thought that Gervase had spent far to much time with me and that he needed to get back to Leanne , as the poor lad had not even had time to have his evening meal. so after much nagging from me he went back home after making me promise to phone him if it started up again, anyway once Gervase had gone I phoned Pauline and gordon and then went off to bed feeling very old and fragile.

 It was a very restless night,s sleep and when I eventually got off to a decent sleep, I slept through until about 9.00 am when I received a text from Pauline to see how I was. The good thing about it was that I was not feeling "Nauseous" but the muscles in my lower chest and stomach were really Sore and Painful, I had certainly put some strain on them last night, so It was going to be a couple of days of rest for me, anyway I made a cup of Twinings fruit tea 

and had a small bowl of cereal for breakfast and then  settled down to rest and watch some TV. I also took a couple of co-codamol which helped to ease the pain and soreness.

well Saturday passed very uneventful, I kept my food intake down to a minimum and upped my fluid intake to stay hydrated and got through Saturday with no more bouts of sickness.

Pauline and Gordon came down to see me and to make sure that I was OK and to see if I needed to have the bathroom cleaned or anything, but that was OK, They also brought me my paper and some milk with them, anyway they stayed for an hour or so and had a chat and then made there way back to Waterlooville, Gervase phone to see If I wanted him to come round but I said that was not necessary as I was going to spend the day watching Movies. and so that is how my day went, I had a couple of scrambled eggs on a slice of toast for lunch and some chicken soup in the evening and also a complan, and then had an early night. at least I managed to keep my food down on Saturday and was feeling slightly better by saturday night.

now on Reflection I think that I had just really pushed my body to the limit over the previous few days and was now paying the penalty for my stupidity. I had walked far to much in such a short period of time and also was eating far to much as well. Through all the trauma over the last 2 years with the myositis diagnosis and the chronic dysphagia and the slow rate of improvement it was easy to forget that I was also diagnosed with a twisted stomach (Cup and spill stomach) and I need also to take that into account as well.

I slept pretty well on Saturday night and Sunday was much the same as Saturday, I was feeling better but on reflection I have decided that I need to eat 2 smaller meals in a day instead of one larger one so that is what I am going to do, Gervase came round and we went out in his car and did a little bit of shopping, we went to Marks and Spencers where I got  6 mini meals for Sunday, Monday and Tuesday, and then we went up to sainsburys where Gervase did his shopping I took it very easy with only a small amount of walking.  

M&S Mini Meals for one

So apart from shopping I spent most of the day recovering from the last aches and Pains from Friday, Friday night I slept pretty well and got up at about 9.00 on Monday.

Monday was again a day of rest and taking it easy, I am still making sure that I am taking it easy and pacing myself better throughout the day. I walked round to get my paper from the new spar shop and the lad that served me was on his mobile phone and did not stop talking even when taking the money for the paper, How rude is that, I certainly wont be shopping there again 

The worst shopping experience ever, really rubbish

anyway spoke to Pauline and Gordon and then just spent the day pottering around the house and catching up on episodes of Bonanza and Gunsmoke. Tuesday was also spent much the same way except on tuesday evening I went to see Gervase and leanne for a couple of hours, Leanne,s dad Dave was there as well and gave me a lift back home about 9.15, I am certainly feeling a lot better now but that was really a rubbishy last few day,s.

So Now we are at Wednesday and it is shopping day with Pauline. having two mini meals a day rather than one large meal has certainly been beneficial to my digestive system, so I will carry on with that regime at the moment, I will contact my speech therapist in the next few weeks and have a chat with her as it is getting near the time when they will need to do a follow up  Endoscopy to see if there has been any change in my cup and spill stomach.

Pauline and Gordon arrive about 11.00 and while Pauline and I go down to the city centre Gordon will spend a couple of hours doing my weekly flat clean.

Get a move on Gordon

Once down town we go to the bank and then boots the chemist, before heading into M&S to get 8 mini meals to take me through until Sunday, we then go to Morrisons in the Victory Retail Park to get the main shopping before getting a taxi back home.

Morrisons Victory retail Park. Portsmouth

once back home, we get the shopping put away and then we have a sandwich and a coffee for lunch before Gordon and Pauline head back home about 3.00. so that is the end of another day, suffice to say that the Rollator stayed at home today and I took the wheelchair, I have certainly learn a valuable lesson over the last few days and that is that with this Myositis, no matter how well you feel take it easy and do not overdo things as it is always lurking in the background ready to pounce and give you a reminder.

Anyway I am feeling almost back to norma again now and I really think the 2 mini meals a day is benefitting me so we will see how that goes, and certainly a bigger variation in my diet so hopefully less laxatives, but thats another story. So Until my next Journal I will say a fond goodbye.

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,

Humidity and heat = Hard to breath.

And so here we are again on a very hot and sunny Tuesday, Don't get me wrong it is so nice to see the sun and Cloudless blue skies but the only problem is with the heat, is that it makes it harder to breath, anyway enough of that so Welcome to Tuesday

well yesterday was a very enjoyable bank holiday Monday, Gordon and Pauline came down about 11.45 and we went down to Southsea for a couple of hours

Tuesday 26th August 2013

I slept pretty well on Sunday night although it was very humid and we do really need a decent Thunderstorm to clear the air, as when it is so hot and humid I find it affects by breathing, anyway I will be seeing my GP on Wednesday so will probably get a inhaler to help with the breathing as I did last year, but then I only used it about half a dozen times.

Aerochamber Plus with Inhaler

as usual when I was awake I made a coffee and took back to bed and just lazed around listening to the radio until 8.30 when I made another coffee and took into the lounge where I sent the morning text to Pauline and then got some Breakfast, Pauline phones to say that they will be down at about 11.30 and then we can go down to the seafront for a couple of hours, once I have finished speaking to Pauline I get on the laptop to check out my emails and facebook, and then I get a text from Gordon to say they are out in the woods with Misty for the morning walk , and he also sent a photo of the pond where they sit and Misty has a mooch around.

The pond where Misty likes to go for her morning walk

anyway at 10.30 I go and have a shower and then get dressed ready for when Pauline and Gordon arrive. They arrive about 11.40 so we head of in the car down to the seafront and are lucky as Gervase and leanne only live about a 3 minute walk from the common and sea front so we can park in there front Forecourt as they have space for two cars, so we see Gervase and leanne and then we are of for a walk on the common with the wheelchair, I can walk for about an hour now pushing the wheel chair and then Gordon or Pauline pushes me. Here are the photo,s from Yesterday.

The Common looking brown and parched, see Pauline had to get in the Picture.

Lots of fun things to do for the Children

looking Good Pauline and Gordon

Heading Towards the traveling fair ground

Don't look so worried Pauline, How much did you lose ???

The Fairground is starting to get busy

Spooky

 Once we had wandered around the common and the fairground and had a coffee and ice cream we headed over to the seafront and had a walk down to clarence pier before heading back to Gervase and Leanne,s to get the car and head back home, Gervase and Leanne were out so we did not see them

looking out to sea towards the Isle of Wight.

Looking along the sea wall

People enjoying the sunshine and the sea.

Once we got home, I made a coffee and then after a chat Pauline and Gordon head Home and I go for a lie down for an hour before settling down to an evening of TV and a nice dinner of Rainbow Trout stuffed with Ricotta and Spinach and Mashed Potato.
At 10.00 I was ready for bed,

and it did not take me long to get off to sleep where I slept right through until 6.30 this Morning.

Tuesday 27th August 2013

So here we are on a hot and sunny Tuesday, woke at 6.30 where after going to the bathroom I made a coffee and took back to bed where I dozed listening to the local radio until 8.30 where I made another coffee and took into the lounge.

well once I had got into the lounge I text Pauline to let her know all is Ok, we are going shopping on Wednesday this week due to the bank holiday etc and so Pauline text back to say that all is OK and that Gordon is out with Misty. I have an appointment with the local vampire today for the monthly blood ritual so I have to get my breakfast and then get ready for when the taxi comes at 10.15.

Getting Ready to meet the Vampire.

well I am washed. shaved and dressed by 9.45 so time for a quick coffee before the taxi from Citywide Taxis turn up at 10.10, it is not one of the regular drivers, but anyway I get my shoes on , grab the walking stick and am out of the door by 10.15 and into the cab and off we go to the "Castle of Blood" AKA Eastney Health Centre.

Is this Eastney Health Centre ????

Or is This Eastney Health Centre ???

And could this be Debbie who takes my Blood ???

So Many questions and so few answers, Oh well thats life. anyway once into the health centre I am soon in to see debbie and then back out and a taxi home., Once I am home I get the rollator and off round to get my morning paper and some milk and then back home to spend the day relaxing at home with the TV and the laptop, as it is to hot to be out in this weather today and I have a day of a GP appointment tomorrow and also down town shopping with Pauline. Once indoors I make a coffee and then settle down to read the Newspaper and do the Crossword.

Relaxation

well it has been a decent day today, a nice relaxing day and staying indoors has certainly helped with the breathing, anyway I will see Doctor Tyrrell My GP tomorrow and get an inhaler to help through this hot and Humid weather, also It will give me a chance to wish him well in his retirement at the end of the Month. He has been our family doctor since 1979 and saw my wife through the birth of our son "Gervase"in 1981 and also cared for Chris through her Breast cancer and from 1985 through until her death in 1993, and now with me with the DM over the last 2 years so 34 years of care and compassion,

Thank you Doctor Tyrrell.

I also had a couple of Photographs sent to me today by Pauline and Gordon of their rear garden in their new home, they have been out in the garden in the sun starting to get it into order so well done Pauline and Gordon.

Gordon working hard watched by Charley cat under the bush in the shade.

looking Good and is that my laundry on the washing line ?

So that is about it for today, I have had a lie down for an hour after lunch and also got the vegetable prepared for dinner tonight, so as it is now 5.00 pm I am going to get this Journal posted and then have a coffee before watching the quiz show "Pointless" at 5.15 on BBC 1 so until the next journal on Thursday I will say.................