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

A visit to the Doctors.

Although it is now Friday I promised that I would post Thursdays post this morning so here we are

Thursday as it happened seemed to be a day that came and went I slept reasonably well on Wednesday night and got up about 8.00 am as Thursday is the day the household refuse is collected so I need to put out the black bin bag ready for the collection.

Time for breakfast.

Once I have done that I phone Pauline and She and Gordon are Ok, I then go on the laptop to check out Facebook and get up to date with the Postings, before getting some toast and Marmalade for breakfast followed by the obligatory five Prunes. after which I get myself washed and dressed, before heading out with the Rollator to go and get my daily paper at the local Tesco Express.

On Facebook again

Once I had got my paper I went back home, my knee is playing up again today so the less I walk the better it is anyway take a co-codomol for it and then go for a lie down.  after about an hour I go and get back on the laptop for an hour until it is time to get some lunch ready as it is 12.30 and I need to have lunch at 1.00.

See my Doctor

I am having a Jacket potato for lunch today with cheese and some mince that Gordon and pauline brought down for me yesterday. Once that has been cooked and eaten it is time for a mint tea before getting the vegetable prepared ready for dinner tonight, as I have to start getting ready about 2,30 as I have a taxi booked for 3.30 to take me to Eastney health centre for my appointment with Dr Lake at 3.50, Dr Lake is a very attentive Doctor and listens to what I say.

Once I have got myself shaved and dressed the Taxi arrives and Off I go up to the Health Centre. I arrive about 3.40 and report to reception I am number 1 to see Dr Lake so I have not got long to wait and am in spot on 3.50.

First of all  she understands that I am having problems with the tapering of the steroids but what she was concerned about was that i was having problems and pains in my Knee and hands, she looked at my notes and prescriptions and could not understand why I was not on Calcium, as I have been on the Prednisolone for so long, I said that is something that I had wondered about as my dietician stopped my Calcium and Vit D tablets in October 2012 after I had come of the Puree and soft lumps diet, anyway she is going to look into my notes and then write to me and is also going to write to the dietician and also my Neurologist as she feels I need to go back on them, but need to find out the exact reason it was stopped. she is also going to arrange tests to see if I may have Adrenal insufficiency

The pains in the knee and hand she thinks could be Arthritis as my monthly blood works for the bone comes back normal so she wants me to go to the St Mary,s walk in treatment centre tomorrow for an x-Ray on the Knee, just to see if anything is amiss with the Knee Joint. I had a x-ray on it about 18 months ago when I was having knee pain and it came back all clear.

St Marys walk in Treatment centre .

Eastney Health Centre and Doctors Surgery,s

So all in all a good appointment so now back home at 4.40 so time for a coffee and relax until Gervase comes in to see me at 6.30 and then dinner for 7.30 and then an evening relaxing listening to the radio and an Facebook so until Fridays Journal I will say Adios..................

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.