A "No Energy Saturday"

Stiff "Hic" Drink

Good morning folks and welcome to Saturdays edition of my Daily Journal.

"I was sitting taking my assortment of Pills and Vitamins today when I dropped a viagra pill in the glass of orange juice but never mind, I needed a stiff drink"

Sorry could not resist that, hope it has not offended anyone, but it is going to be one of those days today, sometimes I get very little after effects from the Methotrexate on a friday but sometimes like today I get very Fatigued and have no energy for two or three days, so I think today is going to be one of those days where I do very little.

A Bad night last night

Did not have a good nights sleep again last night and was awake at 3.30 this morning, Made a coffee and went onto the computer for 30 minutes then put the news on the TV in the bedroom and dropped back off to sleep until I woke again at 6.30, stayed in bed and got up at 7.30 and went into the lounge to watch the TV and wait for the carer.

Misty and Gordon Ready for
Pauline to take them Walkies

mick is the carer on duty today, he is an OK chap and we always have a chat and a laugh, when he is here, he soon gets me washed and groomed and is then on his way to his next client and I go and make a coffee and get a couple of wheatabix for breakfast, once I have eaten those I text Pauline and she phones back to say that her and Gordon are out on the common with Misty and that the weather is not that nice.

Paperwork Done.

It is now 10.00 am And I have no energy at all today, anyway decide that I will go and sit in the back room and sort out all my medical and home care Paperwork and get it organised into a ring binder, so that is what I do, I have the radio on and listening to Classic FM, it is nice music to listen to on a "Lazy Day" anyway it takes 2 hours to get all the paperwork sorted and filed, but a job worth doing so now to get some toast and cheese for lunch with a coffee and a Yoghurt.

I have had lunch so now I think I will go and have a lie down until 2.30 when it will be time to make a coffee and to start this journal and also watch the 1996 made for TV Movie "Titanic" starring George C Scott, Peter Gallagher and Catherine Zeta Jones

1996 TV Movie Titanic

Liver and bacon.

Well I am watching the Movie while writing todays Journal and have just made a nice cup of Mango and Ginger Tea.  Once the Movie finishes it will be time to think about dinner and tonight I am going to cheat and have a liver and bacon with Mashed potato Asda Ready Meal, I was going to have Roast chicken with 3 veg and Mash Potato but cant be bothered to cook tonight so will have that for Sunday dinner tomorrow.

So not a very exciting or eventful day today so will get this Journal finished and then say Bye, Bye until tomorrow.

A Methotrexate Friday the 13th

When You wake up very early, and you really feel like crap.

Some people go out shopping, And buy themselves a hat.

Other people sit there, and stare at the TV,

 Others throw a wobbly, and some go for a wee.

But me, Oh no I tell myself, better earlier  than late.

so go and make a coffee, and take Methotrexate.

well it nearly rhymes, what do you expect "Perfection"

Need Coffee.

 I woke up at about 3.45 this morning, went to the bathroom and could not get back to sleep, so decided to take my Methotrexate early then went on facebook for 15 minutes, and then tried to get back to sleep, must have dozed off and woke again at about 6.45. so decided that I might as well get up and make a coffee and take my Lansoprazole and then watch the morning News until the carer arrives.

Risk Assessment.

The carer arrives at 8.30. she soon gets me washed and shaved, she is pleased that the weather is brighter today, and anyway we have a chat about the new care company taking over this area from Monday, so this weekend is the last weekend with this company, I have the new care company coming this Morning to see me and to do a risk assessment.
Once the carer has gone I get some porridge for Breakfast and then get dressed.
The New care Company person arrive,s about 9.45 and carry out the risk assessment which takes all of 15 minutes as I live on the ground floor. anyway she checks the Toilet, Kitchen, and Bedroom and there are no concerns (Knew there would not be) anyway I insist that the carer gets here by 9.00 am every weekday and by 10.00 am at weekends and holidays, this is agreed and off she goes.

It is now 10.30 and I have just taken a screenshot of Portsmouth today. it is nice and sunny but there is some cloud starting to form so possible rain today later on.

Portsmouth today at 10.35 am

I am not feeling to bad today so  decided to have a tidy up of the small table in the lounge and a bit of dusting and polishing of the TV unit and also the coffee table in the window bay, anyway have a go at that for about 45 minutes and it went Ok but the shoulder/ neck muscles feel a bit tight so that is it for today. I have included a photo of the table that was "Tidied" so Pauline can see how it should look like and to stop her constant nagging LOL.

Here we are Pauline I have tidied the Medication Table "YaHooooo"

 That is enough for today as the Methotrexate is starting to Kick in, so now to relax with a coffee in front of the TV, to watch Cash in the Attic and Bargain Hunt on BBC 1, and then I will get some lunch at 1.00 today I will be having a couple of crispbread with some egg Mayonnaise and also a Banana, and a nice Blackcurrant Fruit Tea. Once that is finished I will watch an episode of Little house on the Prairie. I also found a box of home made cards that I made a couple of years ago, before the onset of the DM. I think I am ready to get back to making them again and resurrecting my eBid Store. Below are some of the cards I have made. most of these were made from recycled materials from old magazines, books, etc with a few Rubber stamp images stamped on recycled paper or card.

My home made cards I made in 2010 before DM Struck.

Cat Nap

I have watched an episode of Little House on the Prairie and am now going to get this journal written and posted and then go for a cat nap until 5.00 when I will put dinner on and then watch Pointless. well that is Friday the 13th nearly over with no Mishaps so got to be pleased with that,  Just hope I do not fall into a cat nap until I have todays journal finished,so until tomorrow I will say Adios.

Thursday down Asda.

Birdie, birdie, in the sky, why'd you do that in my eye?

 Looks like sugar, tastes like sap. 

OMG! IT'S BIRDIE CRAP!"

Deep sleep

And that says it all about Tuesday night/Wednesday Morning anyway today is another day. Slept all the way through from 9.45 last night until the alarm clock went off at 7.30 this morning, which goes to prove one thing !! 

" Lying on a hospital trolley in A&E is a better sleeping remedy than sleeping pills "

However I lay in bed until 8.00 am and then up and into the kitchen , where I make a coffee and then go into the lounge to watch the news on Morning TV until Kim the carer arrives at 8.25. she said she was worried yesterday morning when I did not answer the door but Kim Opposite came out and said that I was taken to hospital last night. so Thank you Kim I am lucky that I have good neighbour,s around me here. anyway Kim soon has me washed and groomed and is on her way. The weather is very sunny today but not that warm.

Portsmouth at 10.43 Today

Toast and Apricot Jam.

well now that I have been washed and groomed I will get some breakfast sorted and have another coffee. Breakfast today is two slices of Toast with apricot Jam, and very tasty is is too I also have a Banana as well so a nice easy , simple and filling breakfast for a growing lad.

Next thing is to text Pauline, She is going up to see the doctor today at 10.40 as she has to have a blood test because of the swelling of her knee. it is better than it was but is still swollen, anyway she Phones me and she is going to come round about 11.00 after the doctors and we are just going to go to Asda today at fratton for the shopping.

Busy Asda Today.

I get myself shaved and dressed and get the wheelchair ready and at 11.10 Pauline arrives with the Taxi and we get the wheelchair in the cab and off we go.
we arrive at Asda and we decide that I will not try walking with the wheelchair today, so Pauline gets a shopping basket and I propel the wheelchair. it is very busy in Asda today so lucky that we have not got to get too much today.
There are a lot of mums and screaming kids here today so we do not hang around for very long and get around as fast as we can.


We at last get to the checkout and there is a bit of a queue, the trouble is with Asda in Portsmouth they have a 15+ checkouts but only two wide enough to allow a wheel chair to pass through, anyway it all went smoothly. I was sat with two bottles of cold milk on my lap, 1 x 2 pint and 1 x 4 pint as they were too heavy for Pauline to carry in the basket, anyway I made a comment that I hope that the "coldness would not affect the working of the Viagra", well this brought a lot of giggling and laughing from the shoppers and I must add a few "Tut Tut Tut,s" some people have no sense of humour, I do not know how Pauline puts up with me. anyway at the checkout we put the bags of shopping into a trolley that was left there and make our way outside.

Pauline at Asda Today.

once outside we phone for a Taxi to take us home and we only have to wait for about 5 minutes when the taxi arrives, the weather is changing and there are a lot of grey and dark clouds forming so it looks like we are in for some rain later this afternoon.

Frank at Asda Today. "a mobile wi-fi hotspot with my Reveal Heart monitor fitted"

 Well once home we get the shopping put away and then I make a coffee and we have a Pasty each for lunch, it is now 1.00 so I phone a Taxi for Pauline to go home and then I settle down with the TV and Laptop to catch up on Facebook and e-mails and then to get todays Journal written and posted and then a lazy afternoon in front of the TV to catch up on the recorded episodes of Little house on the Prairie. it is now 3.39 so I am going to get this journal posted and then a catnap for 90 minutes until Pointless starts at 5.15.


Well thats all today then folks but remember that whatever happens, if you wake up in the morning and pass wind then you are in for a moving experience, so until tomorrow I will say ✸ ✸ ✸ ✸ ✸ ✸ ✸ ✸ ✸ ✸ ✸ ✸

A Lesson learnt the Hard way

Hampshire Ambulance Service.

Well That was a turn up and no Mistake about it. From one of the most Enjoyable and active days I have had in a long time to one of the worst evenings and nights I have had in a long time. From shopping down Portsmouth City centre and then watching and enjoying some old TV to being in extreme pain and being rushed into the Emergency Department at Queen Alexandra Hospital and all happening within a few hours is scary, and just goes to show how "Myositis" is in control of our lives.

Emmerdale.

It all started yesterday evening about 7.30. I had been watching TV while my dinner was cooking, it was baked Rainbow Trout with Mashed Potato. I ate that and also had a snack pot of Fruit in Custard and settled down to watch Emmerdale, Coronation street and some other TV when I suddenly developed Sharp Chest Pains. I automatically thought, " Acid Reflux" and took a couple of "Gaviscon Tablets" and within about 20 minutes it had started to settle down.

Paramedic Rapid Response.

so I thought no more about it thought and enjoyed watching Coronation street and resting after a very nice day when at about 8.30 it came back again, it was a weird sensation and kept coming and easing, I had a lot of wind and thought it would go again but by 9.40 it was still there, I phoned Pauline and Gordon to let them know and they said they were going to come round, but for me to phone the out of hours doctors. This I did and they contacted the Emergency Services and with 8 minutes a Paramedic was at the door.

ECG Wave form.

At this point I am still convinced that it is indigestion but anyway, Pauline and Gordon arrive, (I had not let Gervase know at this point as they have been having trouble with one of Leanne,s dog which has been "Fitting" and they had taken it to the vets so Pauline will let him know later what happens) anyway the paramedic does all the ops and the pulse, heart, breathing are all OK anyhow due to my history of Myositis and the Reveal Heart Monitor Fitted he radios in for an Ambulance so they can transmit a ECG to the Hospital Cardiac team.

Accident and emergency.

Once the Ambulance arrives I get taken into the ambulance and wired up to the ECG Machine. The generated waveform is transmitted to the hospital and the message back is to take me into the Emergency Unit at Queen Alexander hospital for investigation as the ECG is showing an Irregular Heartbeat.

Duty A&E Doctor.

By this time it is 11 20 so off we go off to the hospital it takes about 15 minutes and we arrive and I am taken straight through into the A&E ward, where I am again check Blood Pressure, Temperature, Pulse, Heart, Blood sugar level and also take 4 vials of blood for extensive blood test. They then take another ECG. once that is completed I then have a text from Gervase to say Pauline has let him know and he is at the hospital and will be with me in a minute. It is now 12.00 and the chest pains are all but gone. Anyway I soon send Gervase back home to Leanne, as they have to take the dog for an MRI scan later today as it is not looking good. so Gervase sees that I am OK and off he goes and I am left until 4.45 before I get visited by one the duty Doctor,s.

Cardiac Enzymes

He said that he and his colleague are convinced it is not a heart problem, although the ECG does show an irregular heartbeat it is no different than the one taken when I had the Reveal Monitor fitted. however one of the blood test came back positive showing a slight Elevation in the Cardiac "CK" Enzyme, which could be a sign of Heart muscle damage so I would need to have another blood test done at 7.00 which is about 12 hours after the onset of chest Pains.

At that point I am transferred out of A&E and down to the Medical Assessment Unit (MAU). Red ward and put into an en-suite room to await the MAU Doctor. he comes and see.s me and explains he is the duty cardiologist and that they will take another blood test at 7.30 and then depending on the result they will decide what course of action if any to take. at 6.45 they come and take the blood test and then they bring round breakfast and coffee

 I have not slept much and it is to noisy with the cleaners and the ward activity to sleep now, anyway Pauline packed a couple of puzzle books last night for me, so that passe the time. at 9.30 the Cardiologist comes back and also a Neurologist, and although the Cardiac CK levels are still elevated all other aspects ( like the Trops) are within acceptable ranges and it is decided that the heart muscle weakness is down to the Myositis and not any heart disease, and that the chest pains were due to me overtiring the muscles yesterday, so there we are it was as I thought all along "Acid Reflux" although quite severe, they have increased my Lansoprazole for 4 weeks and I have to contact my GP for further Medication to help control it.

anyway all the Paperwork is completed and I am discharged to the "Discharge Lounge" where my Sister "Eileen and Chris" collect me at 12.30 and bring me home and now it is time to catch up on some dinner and sleep so until tomorrow I will sat Bye Bye.

To the vampire I go

Wakey Wakey

And good morning People from the depths of Transylvania , today is the day i go and see Debbie at the Dracula,s Castle "aka Eastney Health Centre." to give blood for my 3 weekly blood test,s. The things we do when we are on these medications for Myositis. anyway before then i need to get out of bed and get into the lounge ready for the carer as it is now 8.00 am.

Text pauline.

Well it was a decent nights sleep and now I am waiting for Kim the carer to arrive, She turns up nice and early and soon has me washed and Groomed ready for a busy morning which lies ahead of me. Once Kim has left I send the normal morning text to Pauline.
Pauline phone me back about 9.15 to say she is out on the common with Misty but has booked a Taxi for 10.10  to come and collect me to go to the Eastney Health Centre to see Debbie for my Blood test.

As Promised Pauline arrives with the Taxi at 10.20 and collects me and of we go to see Debbie (Queen of the Vampires). we arrive at the Health Centre and report to the chief Vampire Keeper "aka the receptionist" The Music playing in the Background is " The Monster Mash" by the well known Transylvanian Girl band " The Beating Hearts"
I am number 15 and there are two other people before me, It is a scary time sitting here listening to the screams coming from behind closed doors.

However enough of this fantasy story telling, I got a bit bored then LOL. Anyway Saw Debbie and gave Blood and I will phone up on Thursday or Friday to get the results. As usual they will do blood test for Liver, Kidney, a full blood count White and Red cells and CK. as well as Anemia, anyway that is all done and dusted so now We go back outside and Phone a taxi to take us home to collect the wheel chair and then down to the City Centre.

Portsmouth City Centre.

Once we are down the City Centre the first thing I need to do is go to the bank and then into Debenham,s to pay the account for March. once that is done we will go to Boots the Chemist to get a couple of bits and pieces that I need before going to the Expresso Cafe for  a coffee. so I decide to push the wheelchair and get a little bit of exercise, until I feel I have done enough and then Pauline will push me round.

Barclays Bank

well that is the Bank and Debenham,s done and now we are of to the other end of the precinct to go into Boots and then a coffee. I am still pushing the wheelchair and it is going OK so far, But as Pauline keeps saying, "Don't overdo it" anyway so far it is going OK but will listen to my body. 

Boot,s The Chemist

We have got what I need in Boots and now to the coffee bar for a sit down and rest and then it will be into Tesco to get the food shopping and something for dinner for tonight and tomorrow night. Anyway we get sat down with a nice coffee and sit and enjoy the fresh air and Sunshine, although it is not that warm, at least it is dry and Sunny with Blue skies, which is a bit different than yesterdays Wind and Rain. 

our Favourite Coffee Bar.

Well the coffee went down well so now into Tesco, the legs are telling me I have walked far enough so it is into the wheelchair for me and Pauline pushes me the short distance round the corner to the large Tesco supermarket. Once there Pauline gets a trolley and I Propel myself in the wheelchair and we get around Tesco and get the things we want, once we have completed the shopping we go into the Tesco cafe and have a nice bowl of  Vegetable soup with a nice warm Baguette. Once we have finished we go and pay for the shopping and then outside phone for a Taxi to take us home.

Tesco supermarket at Portsmouth city centre.

Taxi arrives and we load up the wheelchair and the shopping and head home. once indoors we put the shopping away and I make a coffee and we sit and have a chat for 15 minutes. We then get the Laundry put away that Pauline brought with her this morning and I then phone for a Taxi to take Pauline home as it is now getting on for 2.15. The Day has been a Good day today and Tonight I will listen to the Soccer Match as Portsmouth are playing a home game at Fratton Park.

Fratton Park, Portsmouth.

Rainbow Trout fillets

So there we go that is the day almost over. so now I will get this journal finished and posted and then think about getting dinner ready at 5.30 for a 6.00 meal. I got a couple of nice "Rainbow Trout Fillets" in tesco today so I will bake those with Butter in Foil Tonight and have them with some buttery mashed Potato "Tasty" I have not had Trout for a long time but it a oily fish, A good source of Omega 3.

So that is the end of my day, it is nearly time for Pointless on BBC1 and then dinner and getting ready to listen to the Football on the Radio, although if I open my widow I will be able to hear the crowd at the football stadium as it is quite near to me, it is one of the reasons we brought this house as I have been a Portsmouth supporter for a long time and also Gervase has as well.we spent many a saturday following Portsmouth football club at home and away matches. Well I will now get this journal Posted so until tomorrow I will say Tatty Bye.

Easter monday Wet and windy.

And so we go into the last day of Easter. and the weather has turned to a really wet and windy day today. apparently it is going to get worse during the day as the weather moves west to east along the South Coast, still at least I am indoors and that is where I intend to stay for the day. A good excuse to press on with some family history research.

So I went to bed at 10.30 last night and slept through until about 6.45 this morning, I laze around in bed listening to "the wind blowing the rain onto the window, until I realize that it is certainly the rain hitting the window but the wind is me",  so that explains why the Duvet was on the floor this morning when I woke up. Oh well this should be fun today then, better go and put the sign out on the front gate to warn the Carer.

At 8.00 I get out of bed and make my way to the lounge with a coffee to settle down and watch the Morning news on TV until the carer arrives, I have no idea who it will be today or what time they will be here as Amanda is on holiday this week. However at 8.30 the carer arrives, I have not seen this lady before, her name is Kim and she will be coming all this week, she is a very nice lady and she soon has me washed and groomed with no problems and is soon on her way to find out where her next client is.

A new carer Today.

Now it is time for some breakfast so into the kitchen for some porridge and another coffee and then get dressed and settle in front of the TV and start some family history research.

Well the morning has gone by pretty quickly, my Flatulence seems to have abated  much to my relief, and it is approaching lunch time so I think today I will just have a couple of Crisp Bread with some cream cheese and a banana, and then it will be time to take a cat nap for an hour before an afternoon of "Diagnosis Murder" which is on "Alibi" I do like Dick Van Dyke in these episodes. and I can also get this journal written and posted at the same time.

"Diagnosis Murder"

Well there we are then a nice easy, relaxing and pleasant Easter Monday, resting today after my "Methotrexate Weekend" and then tomorrow is a hectic day as I have Blood tests in the Morning and then shopping down the city centre with Pauline. So This is a short Journal today.

It seems that my eyesight is giving me a few problems today, too long on the laptop with family research this morning I think, I will be glad when I get my eyes tested on Thursday to see if the cataract has increased since my last eye test in october last year.

I hope everyone had a nice Easter, and so until tomorrow I will say Bye Bye. 

Its Easter Sunday.

Sunday arrives like a
"damp squid"

and Easter Sunday arrives not in a blaze of Sunshine and blue skies, but more like a "damp squid". why is it that bank holidays over here in the United kingdom always seem to see a deterioration in the weather. we have just had a week or so of really warm sunny weather and as soon as we go into the Easter week and the schools break up for Easter, so the weather changes.

Macbook pro Laptop

However again I had a good nights sleep and slept through until 7.15 after going to bed last night at 11.30. So it is now time to get a coffee made and then into the lounge ready for the carer. The carer arrives at 8.30, it is the same girl as yesterday , and she soon has me washed and groomed and then once she is on her way I get some wheatabix for breakfast and also a Banana, then it is time to send a Text to Pauline, who phones back to say all is OK and that she and Gordon are going over to see her sister Fran today. So now to get dressed and then onto the laptop to check out E-mails and Facebook.

Well I must say I do feel a lot better today than yesterday so getting over the effects of the Friday Methotrexate so that is good, anyway it will be another day of rest and lazing around at home today . I have my son Gervase coming in this afternoon for an hour or so. anyway now to get some lunch and today it will be scrambled egg on toast, and also a lemon curd yoghurt so will enjoy that.

The Year Gone By 

And now to see how far I have come in a year. it was at Easter last year that I was admitted to the Emergency Department at the Queen Alexandra Hospital at Portsmouth. I had been having treatment for a twisted stomach since November of 2010 and had chronic Dysphagia and having terrible trouble Swallowing and was loosing weight, in fact it appears that I was misdiagnosed by the GP.  I was very weak and was at My sons house in Southsea, when on the Easter Monday I had trouble breathing and moving so he called the Ambulance.

Q.A. Hospital Portsmouth

I spent the night in the Assessment ward and was put into a general ward on the Tuesday. I was seen on the Wednesday by a Neurologist Dr Gibb and he put me straight onto a Nasal feeding tube, and arranged for me to have a EMG done on the Thursday, he was at that stage looking at "Myositis". anyway I had the EMG done on the Thursday and on the Friday I was transferred by Ambulance to the Neurological unit at Southampton University Hospital.

Southampton Hospital.

I was kept at Southampton Hospital for two weeks before going back to the QA at Portsmouth, While at southampton I had many test,s, Scans, ect and also a Muscle Biopsy which confirmed "Dermatomyositis" Southampton was a brilliant Hospital, anyway I was returned to Portsmouth Hospital , Still on a Drip feed for another week before going onto a puree diet. I was on 60 mg of Prednisolone a day and 7.5 mg of Methotrexate on a friday along with Calcium, Vit b, Vit D, Thiamine,  after a week on a puree diet I was sent back home with a care package but still had limited Mobility, and trouble swallowing and had a carer every morning as I could not lift my hands/arms above my shoulders. and I weighed about 8.5 stone. down from 13.5 I had lost 5 stone in weight. the following Photo shows how I looked when I came out of Hospital.

Me with Gervase, Gordon and Pauline last May

and now a year on I am still on Prednisolone but down to 10 mg a day and on 15 mg of Methotrexate. My swallowing has improved so that I am now almost eating normally, my mobility has improved although my arms are still weak and still have a carer in to wash my Face and comb my hair. but everything else I can do myself. I need someone to take me shopping as I still have weak leg muscles although better than they were last year and I have gained some weight back and am now up to 11 stone 4 lb. The following Photograph is how I am now 1 year on.

Well it has been an interesting journey and hopefully the progress will continue as this year progresses, hopefully I will get more mobility back into my arms and legs and can start Physio Therapy and also reduce down more on the Prednisolone. I have had a couple of dizzy spell,s and they have detected an irregular heartbeat so they are monitoring that with a "Reveal Monitor" inserted in my chest, they think it is related to the "Myositis" but it could also be from the medication.
So there we are a quick recap on the year gone past. Thanks must go to all the help I have received from the Doctors and Nurses at QA and southampton Hospital, To all my Family and friends for the help and support they have given me and it is onwards with a sense of humour so until tomorrow I will say cheerio.