Interesting Friday.

Hello and good morning one and all, so here we are another Friday, but not any Friday, This is the last Friday in the month, It is also Methotrexate day but most importantly, it is my Adult Social care Assessment day, "" Whoopeeeeee"" and also there are only 85 days left to Christmas.

Where is the Carer.

Had A good night last night woke a couple of times but got back off to sleep straight away and slept right through from 2.00 am until 7.30 am so that was good, had Methotrexate at 7.30 so the reaction to that should be over by 1.30 pm so now for breakfast , it is 9.00 am and the carer has not yet been, my regular carer amanda is on holiday so it will be someone new today, so hope they get here soon or I will have to get dressed and tell them to forget it as I have things to do and can,t sit here all day in my pyjama,s waiting for the carer.

The weather is going to be hot again today, so that means the breathing will be laboured again as the humidity rises.

The replacement Carer Arrives

It is now 10.40 am and the carer has just arrived, it is halfway through the morning and I have things to do ready for my assessment this afternoon, but I am not paying for this adult care so can't really complain if they are a bit late arriving. The Methotrexate is not having such a bad effect on me today so the system must be adapting to it, so that is a relief, however  must now get on and get round to Tesco for some milk and a paper and then get the washing up done from breakfast and then it will be time for lunch. Oh what a busy life we lead. The new carer seems pleasant enough but she can talk the hind leg off a donkey, still better than a grumpy carer I suppose.

Eileen and Chris

Ok so here we are at 12.00. Had a stroll round to Tesco express to get some milk then back home and settled down to sort some paperwork out ready for my Assessment this afternoon, My Sister eileen and her friend Chris are coming down this afternoon as I need someone here with me during the assessment to take notes.
Anyway time to get some lunch, I got a (Gammon in Parsley sauce with Carrot and Potato) Mini meal from Marks and Spencer yesterday so will puree that down and have that today with some Chicken soup, should go down a treat.

It is now 12.50, have had lunch and very tasty it was to, just had a phone call from Portsmouth City Council finance team to say that they will be round in a couple of weeks to carry out a financial assessment, to see what if any financial help I am entitled to for my care package, ( The care package assessment is what will be happening this afternoon) so at last things are starting to move, so more fun and games trying to explain Dermatomyositis to health care personal. anyway time to have a change of clothes ready for the visit of the assessment team

Eileen and Chris exhibition of art work.

Well that was a waste of time, it is now 4.45 and I am still wondering what we achieved at this assessment , I think the answer was "Not A Lot " the girl came on her own stayed about 34 to 40 min,s and spent most of that time totally immersed in talking about, the help offered by AgeUK, Salvation Army and St Johns, so in my opinion a waste of time,  The one clear cut thing that came out of it was that I am the only person on there books in Portsmouth with Myositis.

Eileen and chris were running late as they were held up setting up there exhibition so arrived Just as the Girl from Adult social care was leaving, so a waste of a journey for them, but they stayed and had a cup of coffee and a chat so that was nice.

It is now 4.55 so will need to think about getting dinner and then a relaxing evening in front of the TV with the occasional trip onto facebook, and trying to make sense of todays assessment visit. so will pop off now for a quick nap so until tomorrow tatty bye.

Off to town we go

Good morning one and all, well its another day of Blue Sky,s and Sunshine here on the south coast of the UK.  It is 9.00 am here and the temperature is already 21 c so a warm day ahead, so already finding it is heavy to breath with the humidity in this warm weather, but it is nice to see the sunshine.
Had a decent nights sleep last night, went to bed at 10.30, woke at 4.00 am for the bathroom then back off to sleep until 6.30 am so not to bad, had coffee at 7.00 then up and breakfast before the carer came at 8.20, so now all washed and groomed ready for the day ahead.

Today Pauline is coming round to take me down to Commercial road shopping precinct so that I can get a new battery fitted to my watch and I can also pay a couple of bills and have a look around the larger stores like Debenham,s and British Home Stores, so I need to get shaved and dressed ready for when Pauline gets here about 10.30.

Commercial Road Precinct

It is now 10.20 and Pauline has arrived so we get ann earlier start and head of down to Commercial road, again we will park in the Matalan Car park, it is only £2 for 2 hours so that will give us plenty of time to get the bit,s and Pieces done. anyway get the car parked and off into the precinct. It is very busy today, mainly with the new intake of University students out getting all there bits and pieces that they need for the term ahead.

Marks and Spencer

Anyway make our way along to H. Samuel the jewelers to get a new battery fitted into my watch, and then along to Marks and Spencer to get a couple of ready meals, pauline needs a few pieces as well, not the easiest shop to get around with a wheel chair, and so many people just will not move out the way when you are trying to get around the aisles, still once you rattle there shins with the foot rest,s on the wheel chair they soon get the message. anyway get what we want from there and then make our way to Debenham,s so I can pay my  Debenham,s Account. Decide to have a coffee in Debenham,s cafe while we are here, get 2 coffee,s 1 sandwich for Pauline and a lemon Meringue for me " How Much" £9.81, Bloody daylight robbery, still needed the
 coffee, have the refreshment and then pay the account and out of Debenham,s and over to Wilkinson,s.

Wilkinson,s Portsmouth

We go into Wilkinson,s with 30 min,s until the  parking ticket expires, Haven't been in Wilkinson,s for months, Pauline needs an Ironing board cover and I need to get some light bulbs for Gervase, anyway get what we want and make it back to the car park with 5 minuets to spare.

Albert Road

The last thing we have to do is to go and pick up my prescription from the Doctors at Eastney Health Centre, and drop it in to the chemist so that they can deliver it tomorrow, so decide for a change we would drive there via Albert Road, so that was a nice trip, got the prescription into the chemist OK and then home for a nice cup of coffee and a spot of lunch, and then a well deserved rest, pauline comes in and has a coffee with me and then makes her way home, and I get my lunch.

Just looked at the clock and it is 5.00 pm, don't know where the afternoon went, had a stroll around the block to get a bit of exercise and had a nap in the armchair, spent a bit of time on the laptop and that is it for this afternoon, Gervase phoned to say he has been working up in London Today so he will be coming in a bit earlier to see me today as he always gets away early when he is up in the London Office, so that will be nice so he will probably be here about 5.30 - 6.00 depending on what train he can get from london, hopefully there will be no delays tonight as they are having problems on the railways because of people pinching the cables from the signalling system to sell off as scrap metal, (what ever next ????), anyway will start to get dinner ready so will see you all tomorrow and tomorrow will be exciting as it is Methotrexate day and my Social care assessment Yipeeeee. Tatty bye one and all.

Happy Wednesday

Yahoo, another bright Sunny day, last night was a decent night,s sleep, so it is now 8.12 am and I am sat here waiting for the carer to arrive and get me washed and groomed for the day ahead, I have had breakfast and coffee and also taken all my morning Medication.

I have reduced my Prednisolone down to 11 mg a day from today so hopefully there will be no adverse energy loss or increased muscle pain. I have aching shoulders this morning, I think I overdid it propelling the wheelchair around Asda Yesterday, Pauline kept on to me to slow down, but do I listen "NOOOOOO"

Had a really good evening round with my Son Gervase and his wife Leanne yesterday, had a nice chat for a couple of hours, got there at 7.00 pm and left about 9.00 pm. Leanne,s  dad Dave, was there as well and he gave me a lift home, we had to get away at 9.00 pm as Portsmouth were playing at home last night and the match ended at 9.30 and Dave needed to miss the traffic at the end of the match. Pompey played peterborough and  the score was Portsmouth 2 Peterborough 3 so not a good result.

No Energy today.

So it is now 10.30 am, the carer  arrived at 8.45 am and I have had my face and neck washed, also hair combed so all is ok for the day, got dressed and had a wander out to the back garden, a very nice day but to much sunshine and the rash is coming up on the back of the hand,s so get back in out of the sun. Pauline just phoned to say she and Gordon will be going to B&Q this afternoon so they will pop in and replace the tube in my kitchen light for me. Well not much happening this morning, very quiet so hopefully a nice restfull day today after a hectic day yesterday, not much energy today, this happens when I reduce the Prednisolone, however the body should adjust to it by Saturday or Sunday, anyway need to get my act together and have a walk round to the Tesco Express for a paper.

Had a nice stroll around to Tesco and got the Paper and decided to stroll around the corner to the cafe in Winter road and sit outside with a coffee and have a read of the paper, Not a good idea as the coffee was not of a very good quality,  did not enjoy it at all, probably should have got a bottle of drink from tesco and gone over to Milton park for 30 min,s to read the paper, anyway get back home and go for a lie down for half an hour.

It is now 1.00 pm so time for a spot of lunch so get the washing up from breakfast done and decide to have a couple of Asda Crispbread with pate for lunch, so eat two and decide another two would go down a treat, so that is four Crispbread with Pate followed by two jam tarts and a custard pot. Well I enjoyed that so now to work on the laptop for a couple of hours, but must remember "Heartbeat " is on TV at 2.00 pm.

Just had a phone call from Pauline to say she and Gordon are just leaving home to go to B&Q, it is 3.10 pm so as it is a nice day I will take a stroll over to B&Q and meet them there, they can then drop me back home afterwards, I must say that I feel a lot more energetic this afternoon than I did this morning, I think getting out of the house and seeing friends helps a lot, Anyway get to B&Q and meet up with Pauline and Gordon

Pauline and Gordon

Have a chat with some of my old workmates at B&Q and then Gordon and pauline take me back home, They come indoors for a coffee and Gordon replaces the tube in my kitchen light so that is OK, we have a coffee and a chat and then Pauline and Gordon make there way home,  that was a pleasant couple of hours so now to have a rest and then get dinner ready, it is now 5.05 pm and I think I will have chicken with mashed potato and broccoli tonight,

The pedometer is interesting as it lets me keep track of how mobile I am . today so far I have walked 2,447 steps which is equal to 1.10 km at a average speed of 2.29 kmh. so until tomorrow which will be another busy day I will say Cheerio.

It is all happening today

On Facebook again.

Hello there one and all so here we are at the start of a hectic few hours on this warm and sunny Tuesday, so much to do and so little energy to do it with, ( and so the story goes), anyway not a very good night last night, was waking every 90 minutes and then going back to sleep this went on from about 10.45 until 3.30 am and then I slept through until 6.30,  but I was then wide awake, so made a coffee and then got up and went on to the computer and facebook ( what a boring life I lead )  Stayed on Facebook for an hour then got some breakfast at 7.45,  after breakfast and several coffee,s I decided to get ready for the carer, she will be here about 8.30 to get me washed and groomed and then I will be getting a visit from the speech therapist at 9.00 am regarding my Dysphagia, so better get a move on .

one happy carer

Carer arrives and gets me groomed and then I get dressed, ( collar and tie today) ready for the speech therapist, hopefully she will be on time as Pauline will be round at 10.00 to take me to the Eastney Health Centre for my Fortnightly blood test.

Just as the carer leaves there is a knock on the door and the Speech therapist is here, spot on 9.00 am,  it is a few weeks since I last saw her and still not got the appointment through for the Barium Swallow, so she is going to chase that up for me, so that we can see what if any exercises we can do to help with the swallowing although, there is improvement which she is pleased about.

Speech Therapist exercices

I tell her I am having one " Non puree day every week " she thinks that is a good idea, as long as I know my limitations, however we go through a few exercises that I can carry out at home and so she leaves at 9.45 so now I can get sorted ready for pauline at 10.00. ( God I am knackered already )

Anyway Pauline arrives at 10.05 and we get the wheelchair into the car as we are going first to give Blood for the Blood test at Eastney Health Centre, ( must remember to confirm appointment for the Flue Jab and also the next Blood test, and also hand in repeat prescription for collection on Thursday) After the health Centre we are off to B& Q to get a light tube for the Kitchen light and then on to Asda at Fratton for the weekly shop.

Well we get the Light tube at B& Q and then head to Asda at Fratton, the traffic is heavy today and it is very warm in the car, this heat and sunlight does not do my rash on my hands any good at all, anyway get to Asda and the first ticket machine is not working so that is a good start, find one that work,s pauline has got the wheelchair out of the car, so of we go into Asda to get the shopping done. , I walked round B&Q and that did me in so am glad of the wheelchair, just wish that other shoppers would be a little more tolerant of people in wheelchairs, also the amount of cages with stock in around the aisle,s makes it difficult to negotiate.Anyway we get the shopping done 'Eventually' and make our way back to the car park and then home.

Well we get back home and have a well deserved coffee and then Pauline makes her way home. so a good day but tiring but got a lot done,  At 4.00 pm I receive a phone call from Portsmouth adult social care to say that they are coming round on Friday to carry out an assessment of my need,s, to be quite honest I had all but given up on them however if they put something in place at the speed it took them to come out to do an assessment, then it should all be sorted sometime soon after next years olympics.

Well that is about it for today so until tomorrow, tatty bye

Another day of Sunshine.

Good morning/afternoon/evening people and welcome to another monday, it has just dawned on me that this is the last Monday in September, goodness how time flies when you are having fun. Well Not a good night last night, but not a bad night either really, was awake and up between 3.15 am and 4.00 am but slept well before and after until 7.45 but do not feel as tired today so that is something,  The weather is going to be fine today with a max temp of 21 c and humidity of 73% so not good but not bad for the breathing but they do say it is going to get warmer as the week goes on.

Gastric Reflux

so get coffee made and drunk then out of bed ready for the carer,
 I have suffered from a lot of acid reflux/indigestion over the last 2 to 3 days mainly at night so will phone doctor this morning and see what she says, anyway carer comes and gets me ready for the day ahead and then get breakfast made and phone the doctor,s. doctor phones back at 10.00 am and wants me to go in to see her for a check up and a chat at 11.00 am.

Eastney health Centre.

Need to phone a taxi and get down to the eastney Health centre to see Dr Proctor, get to health centre and in to see the doctor by 10.50 am, we have a chat about how things are going and then she gives me a thorough check over all seems in order chest is clear, Breathing is OK, blood pressure OK, all seems to be in order, Did a Urine test last week the results for that were normal, and all my last blood tests were ok so glad I went,  The doctor has raised my Lamprazole to 30 mg tablet daily, to try and counteract the Gastric reflux which is caused by the steroids in conjunction with my twisted stomach and the Dysphagia, so apart from that and the Dermatomyositis I am as fit as a fiddle.

Come out of the Doctor,s just about to phone for a Taxi home when a bus comes along , its going my way so I think " Why Not " so get on the bus and go home that way, I get off at the Tesco Express in Goldsmith Avenue, and get a little bit of shopping and then a short walk home, so that was OK. Well now time for a coffee before my Sister Eileen and her friend Chris Arrive to pay a visit and have lunch with me.

Eileen and chris arrive and I make coffee and they have there lunch and I have mine, Eileen brought some photo,s of angle and Broadhaven in Pembrokeshire, they were there on Holiday last week and it is where our Grandfather was posted in the early 1900,s with the Royal Navy as a coastguard.

Incase anyone is interested results from Pedometer for today so far from 8.00 am until 5.00 pm is that I have walked 1,585 steps  = 0.7 km at a average speed of 2.31 kmh, so london Marathon next year LOL

Well that was a very good day, so now to get dinner ready and then a evening of TV and Facebook so until tomorrow Tatty Bye.

Bl@@dy Students

Student Breakfast.

Hi there one and all, and so we go into the era of the Portsmouth University Student,s. As if I don,t have enough problems with sleeping at night we now have the "Students" moving into their rented accommodation, there are more houses in our road and surrounding roads let to students this year than normal, probably down to the state of the housing market, Not that I have anything against students, I just wish that they had a little bit of consideration at three o-clock in the morning and keep the noise down, still it is always like this until they start there studies, give it a week or two when they have spent the grant,s and it will quieten down.

Anyway not to bad a sleep last night, a bit noisy, but it quietened down around 3.30 and I slept through until about 7.45, then made a coffee, had breakfast and ready for the carer at 10.30. once the carer had been I got dressed and then had a walk round to Tesco for some milk and a paper, having a slight problem with the breathing today, It is probably down to the humidity as it is 90% today which is the highest it has been for a few week,s so it is nice to see the warm sunny weather, it has its disadvantages.

Weeding the Garden

Back from Tesco, and get some lunch, chicken soup today I think. Gervase phoned earlier he will be round about 2.00 pm and will get a bit of weeding done for me in the back garden,
Gervase goes out and does the weeding for me, I help by holding the bag for the weeds to go in  ( I spoil him LOL), he also got some weed killer for me so he sprays that on the garden for me as well, During the winter I will get some weed matting down and get it covered with Gravel, then I can have a few ornamental pots with plants in for next year.

Well I have now got a Pedometer, I was saying to Gervase that I was thinking of getting one so that I could keep track on how much my walking was improving over time, so he suggested I use his for a week or two before I go and buy one to see if it tells me what I want to know, so must remember to keep it on me from morning to night, it will be interesting to see how far I actually walk in a day,

Well gervase went at 5.00, enjoyed his company, so will now see about getting some dinner and settle down to an evening of facebook, U tube and Downton Abbey at 9.00 pm on the TV, so until tomorrow Adios.

Is it really Saturday Again

Wakey Wakey, rise and shine

Hi there folks and so we embark on another Saturday, well the weather is nice and warm and sunny here in Southsea on the south coast of the UK so all systems go. Something different for today, I thought I would do an hourly Journal so you can see how I spend my Saturdays ( Most days Really)  Not a bad night last night, woke a couple of times and eventually woke properly at 6.30 am but didn't get to bed until 11.45 pm last night as I stayed up to watch Mrs Browns Boys on BBC One, so not a lot of sleep last night.

Need my Coffee

7.00 am. Time to get a coffee and Watch the News on BBC 1, It seems no one knows if the satellite has reached the earths surface yet or not, as long as it misses my house I don't really care. so make the coffee and back into bed. Love this hospital profile bed you can get the position just right for watching TV, Just waiting now until October 3rd when they come and fit free sat dish and box for me on the digital change over scheme,






8.00 am. Well time to get up and into the lounge, but first to the kitchen and get some Breakfast, Porridge today I think, and then wait for the carer to come and get y face washed and hair combed ready for the day ahead. Anyway have breakfast and then open the mail, more bills, thats all I seem to get these days, check the online banking to make sure Pension has gone in and then sit and wait for the carer carry on watching the News.

9.00 am Carer has still not turned up yet so think I will make another coffee and then get onto facebook, see who is around and catch up on the overnight postings, also catch up on the facebook games. these are addictive, but passes the time I seem to be hooked on Mafia Wars and Gardens of Time. also play City ville and Treasure Madness.

10.00. am Still no sign of carer, thought about phoning the office but Carer turns up at 10.30, it is mel so that is OK she is really god, it turns out that one of the carers has phoned in sick so Mel has extra people to see  anyway I am now all groomed for the day ahead so panic over.



11.00. am Well that is all sorted now, got dressed, washing up done so now a walk round to tesco for some milk and chicken thigh,s and then I can settle back down indoors and watch a bit of Time Team on the TV, I do enjoy that program, although these are al repeats.
Enjoyed the walk to tesco went the long way round so a nice bit of exercise but feeling a bit tired now so will probably have a cat nap later on, any way got my shopping, so now a coffee and a sit down.



12.00. pm Have been enjoying time team on the TV but think I will go for a short nap as I am feeling a little bit short of energy, a combination of a late night last night and the tapering down of the Prednisolone, also only got about 4.5 hours actual sleep last night, to many coffee,s in the late evening before bed, should know better, anyway put on the radio for Classical FM and have a lie down

1.00. pm well that feels better, a lot fresher now, so needed that for an hour, slept from about 12.30 until 1.15, but feel all the better for it, so now for some lunch. I have a Spaghetti  Carbonara in the fridge so will puree that for lunch.
Enjoyed the Carbonara, it made a change from chicken, so now for a Custard pot and fruit and then have a little walk .

Goldsmith Avenue

2.00. pm Ok then I think I will have a short stroll around the block for some fresh air, and have a chat with some of the neighbour,s before settling down in doors to listen to the football on the Radio,
 So go for a walk via Goldsmith Avenue, have a chat with a couple of the Neighbour,s and get back home just in time to catch the start of the football match


3.00. pm I am now back indoors and listening to the Radio for the football match. Portsmouth are playing Blackpool today. It is a home game so they are playing at Fratton Park which is only just over the road from where I live. Hopefully t will be a good match, anyway it gets to Half time and  the score is 0 - 0. so off to make a complan drink for a bit of half time refreshment, not the same as having a Burger, but thee you go and as my old mum used to say "Complan a Meallllllllllllllllll in a Mug "

Fratton Park

4.00. pm Complan duly drunk so now it is Kick off for the second half, not a good match for either side but at least we are not loosing, however it looks like this is heading for a draw, well that is the second 45 mins over and 4 mins of stoppage time to play and GOAL, Pompey score, great jubilation at Fratton  Park. Thats it Final Whistle goes so Pompey Win 1 - 0 'Come on you Blueeees'

5.00. pm So a good result for pompey, a win at last, well now for a hour or so on the computer and then think about getting the dinner done. Went on Facebook, and then spent 30 min,s on Ancestry , re-arranging family history Photo,s. Saw a posting from my Sister Eileen and Just had to post a photo for her so spent a little bit of time adapting a photograph to put on Facebook so that is about it, it is now 6.00 pm and time to get dinner on so it will be ready for 7.00 pm. so will have dinner and then get this blog posted, so until tomorrow, I wish you all a good Saturday evening and a pleasant night.

It's a lovely day today

♬♫ Its A lovely day today ♫♫.
♬♬ And whatever you got to do ♬♬.
♫♫ It's a Lovely Day for doing it that,s true ♫♫, So stuff the Myositis, Today is going to be a good day, and thats all there is to it.

Had an Excellent night,s sleep last Night, went to bed at 10.45 pm and apart from waking up at 3.30 to go to the bathroom I slept through until 7.15, Whoop, Whoop,  so now the dreaded Methotrexate and the Prednisolone, accompanied by the Vitamin b compound, The Thyamine Hydrochloride, The Calcium and the Vitamin D  and we will be ready for the carer.

A jolly god wash

The carer is running late today and does not arrive until 9.15, but that is not a problem as I have nothing planned for today, so anyway have a good Face wash and hair washed and combed and am now all ready for the day ahead whatever that may bring.

So now for some breakfast and then perhaps an hour out in the garden as that is looking a little rejected lately, so perhaps that will be the thing to do.

In the Garden.

The Weather is very sunny today and quite warm so as my back garden faces south it gets a lot of sun and keeps it quite warm but also there is a lot of shade from the adjacent terraced houses so armed with a bottle of weed killer and making sure I am protected from the sun I venture out for 30 min,s and spray the weeds with the weed killer, that should start to work later today and should be ready for Gervase to pull them up for me on Sunday when he comes to visit.

Ok so that is that done so now a sit down and a rest and then I need to walk around to the shop for some Milk, so sit and watch TV for a while and have a rest and then take a slow stroll around to the Tesco Express Store to get the Milk and see a bit of the outside world.

That took me about 30 min's so pleased with that also I seem to be having no reaction to the Methotrexate today and also not feeling so lacking in energy, but that is enough for today, it has been really good today and I am not going to over do it so this afternoon I will stay in and go on facebook, and work on my websites, so get some Chicken soup for lunch and then a nice restful afternoon and evening in store.

It is now 6.00 pm and it has been a really good day today so will not tempt fate so just off to get my dinner sorted, Chicken in a mushroom sauce with Mustard mashed potato tonight,  so until tomorrow I will say tatty bye

A Busy Thursday

Hello everybody and here we are again, it had to happen, it always does,and it really pisses me off. After a few decent nights sleep you think at last things are starting to settle so what happens ? exactly, you have a crap night, and that is what happened to me last night, for some reason and I have no idea why, I just could not get to sleep properly.

I kept dozing and waking every half hour between 11.30 pm and 3.30 am, eventually got off to sleep about 3.45 am but was awake again by 7.30, hope this does not happen again tonight as I am absolutely Knackered today. anyway had to get up and make a coffee before the carer arrives so did breakfast at the same time and try and get myself motivated for the day ahead, I do wonder if it is because Yesterday I again reduced the Prednisolone down to 12.0 mg, it could be to do with that, or drinking to much coffee yesterday evening, so probably my own fault anyway, I will never learn

As usual the carer turns up at 8.30, her normal cheerful self, so that cheers me up a little anyway she gets me washed and groomed, so am all ready to meet the day head on, but really just want to go and catch up on some sleep, but Pauline has just phoned to say she will be round about 10.00 o-clock so just time to get the washing up done and check facebook and then Pauline will be here.

Pauline arrives at 10.15 and we decide to take a trip down to winter road, as I need to get some items from the chemist and also from the Co-op, so that seems like a plan, so we wil take the wheelchair and I can walk and push that for a bit and then when I have had enough, pauline can take over and push me, so that is what we do.

So off we go and I walk as far as the co-op which is a fair distance and then pauline takes over and pushes me around the Co-op and Chemist and then we make our way home, being out in the fresh air has woken me up a bit so that is ok. anyway enjoyed the walk, ( Not as much as being pushed though LOL) we get back home and make a coffee and sit and chat with Pauline for 30 mins, Pauline then helps me to sort out a pile of old Magazines from the upstairs cupboard and get them in the recycling bin, by now it is 1.15 pm so pauline makes her way back home and I get myself some soup for lunch, and sit down to watch TV for a bit.


Decide to have a lie down for 30 mins at 2.45 and had a cat nap until 4.00 pm, feel more refreshed now as the day has gone on, but the Neurologist did say that I would loose energy as I tapered of the Prednisolone, so don,t know why I am surprised about feeling tired.

It is now 5.30 and time to get some dinner ready as my son Gervase will be in to see me this evening about 6.30 on his way home from work, He always pop,s in on a Thursday evening and also on a Sunday to see me, and I go round his house on a tuesday so I am lucky to have such a caring family.

 Also my Sister Eileen and friend Chris try and pop in n a regular basis as does my Brother Pat, Leanne comes round when she can as does Elaine, Leanne's mum, also Pauline comes in on a Tuesday and Thursday and occasionally Andy from B&Q pops in and also Dave Bonnie and Jayne. so I am lucky that I see lots of friends and family.

Well dinner is ready so until Tomorrow and the dreaded Methotrexate Good Night.

Another Positive Day

Good Morning people and welcome once again to another exciting day at my Dermatomyositis Blog, well here we are at another Wednesday, but not any Wednesday for today is  Myositis awareness day so on the facebook groups we are changing our profile pictures to the blue ribbon, in the hope that we can make people aware of Myositis and how we need more research into this disease, and hopefully one day to find a cure.

Had a decent nights sleep last night and so am awake at 7.15 am and ready for a coffee and breakfast before the carer comes at around 8.30. Wheatabix for breakfast today I think and will have those in bed before making a move to face the day ahead.

The weather today is not to bad, a bit dull at the moment but they do give a forecast of Sunshine today so looking forward to that as winter will be on us soon enough..



Have a good day to look forward to today, have Dave Bonnie and his daughter Jayne coming to visit today for a couple of hours, had a facebook message to say they will be here about 11.00 am,  True to there word they arrive about 11.10 and we have a nice chat and a coffee and before long it is 1.30 and time for them to go, but it was nice to see them both and enjoyed the company, so now time to get a little lunch, I have an Asda Fish pie in the fridge so that will go down well,

So Now had lunch, fish pie was very tasty, made an extra cheese sauce to go with it but did not puree it so am pleased about that, My Speech therapist phoned to see how I was getting on, and she seemed pleased that I was making progress, and is going to come and see me next Tuesday, so all in all it is going well and also today I reduced my Prednisolone from 13.0 mg daily to 12.0 mg daily, so getting down towards the 10.0 mg daily that the Neurologist wants to achieve, and hopefully when I see him in November he will give me the go ahead to carry on reducing until I can come of the Prednisolone altogether.

Well thats about it for today really, not a very exciting day but a positive day so until tomorrow I will say Adios Amigo.

Its Another Tuesday

Hello there one and all Another day dawns, and again the weather is going to be changeable here in the UK, it is cloudy with patches of sunshine so at least the rain is keeping away today.  well another decent nights sleep, again only woke once between midnight and 7.30 this morning so it is probably down to the lower dose of Prednisolone, and tomorrow I reduce down to 12 mg per day.

All ready for te day ahead.

Well its time to get some Breakfast and ready for the carer as Pauline is going to be here by 10.15 and we will be off to do a weekly shop at Asda in Fratton. So need to be ready for when Pauline gets here.  The carer arrives at 8.40 so now I am all groomed and ready for the day ahead.

Just had a text from Pauline to say she is on the way, so get the wheelchair ready to go in the car for when Pauline gets here.  Pauline arrives at 10.10 am so we get the wheelchair into the car and off we go to Asda.

Working with the laptop.

We get to Asda and find there is a problem with the parking machines, they take your money but won,t give out a ticket, so takes a few min,s to find an attendant to sort that out and then off to get the shopping, that does not take long today and we are back home by 12.00 o'clock, so a well deserved coffee , and then Pauline makes her way home and I settle down with the laptop and facebook, for a couple of hours. after having some chicken soup and crisp bread




Well that was a good afternoon, time went by quickly, so now to get an early dinner, probably some Salmon tonight I think and then at 7.30 off round to my son,s  house for the evening to spend a couple of hours with him and his wife, so looking forward to that.
Gervase will bring me back home about 9.30 just in time for the News on TV and the film, so that will be another day done and Dusted.

Myositis Awareness Day 


Now then one and all don't forget tomorrow is Myositis Awareness Day. hope you have all changed your profile picture to the blue ribbon for the day, the Idea of Myositis awareness day is to make people aware of this really horrible Autoimmune Disease that attacks the muscles. you can also go to The Myositis Association Website to give a donation ( this is the USA Based site ) or to the Myositis Support Group website to give a donation ( This is the United Kingdom Based  site ). The link,s to both these sites are below along with the British site for rare diseases,

The Myositis Association website.

                The Myositis Support Group website

The United Kingdom Rare Disease Alliance website