Wednesday, August 31, 2011

A quieter Wednesday.

so we go into the last day of August with a whimper, although  the weather is not to bad it is nothing to write home about. well several things to do today, but mostly I will be taking it easy after my few hours out yesterday, had a really good night last night, went to bed about midnight and only woke once during the night about 3.15 am and slept through until 6.45 this morning. had a coffee in bed and listened to the Radio until 8.00 am and then up for breakfast and ready for the carer.

Carer came as usual at 9.00 am and then pauline phoned to say she would be here at 11.00 to take me to Eastney Health Centre for blood test at 11.10 am, so I needed to be ready and waiting, pauline arrives and so off we go for blood test, I am now on Fortnightly blood test instead of weekly so hopefully the nurse will find the blood OK, as the normal girl is on holiday at the moment.

well the blood test went OK no problem getting the blood out, in fact it was the easiest anyone has got blood out of me, perhaps she has been practicing ???

anyway hands in repeat prescription and then back home for a coffee, Pauline can't stay long today as Gordon is not so well so we have a coffee and pauline heads off home.

well a nice relaxing and easy day today, reduced the Prednisolone down to 15 mg daily from today and then next Wednesday will reduce to 10 mg daily, certainly feel the difference in lack of energy as I have been reducing the pred, and also an increase in joint pain but not as much as I thought I would. well not a very exciting day today so will catch up with some daytime TV and probably have a sleep this afternoon so until tomorrow. Adios.

Tuesday, August 30, 2011

Hi Ho To Town We Go

Good Morning/Afternoon or Evening one and all, A good night last night, woke a couple of times through the night but slept pretty well from 11.30 pm until 6.30 am, not a bad morning today, the temperature is around the 16 c mark and although they give sunny spells, at the moment it is quite cloudy and looks like we had some rain last night as the patio is very wet.

Off we go to the precinct
It is going to be a good day as I am going down to the city centre today in the wheel chair, pauline is coming to collect me at about 10.30, so that will be nice. we will probably park in the Matalan car park and spend a couple of hours around commercial road and then back to Asda at Fratton to do a small food shop. anyway pauline arrives, loads up the wheelchair and off we go. arriving at Matalan we park the car , get out the wheelchair and away we go into the precinct.

Barclays Commercial Road, Portsmouth

I have a few chores to do today starting with Barclays bank, I have a cheque to pay in so we join the Que, and wait patiently for the staff behind the counters to wake up and become aware that they have customers who would like to be served, At last the realization sets in that no matter how many people are waiting to be served the staff are in no hurry to stop the casual talk and actually serve the customers, so we end up waiting 30 min,s to be served and pauline won,t let me make sarcastic remarks about being kept waiting and the reason I wear "Tenna for Men" when going into Barclays.

Debenhams in the precinct
At last we are out of the Bank and next stop is Debenhams department store, I have a debenhams bill to pay and since they have upgraded the website I cannot gain access to pay it online as I used to do so have to pay it in Person,  Hopefully the lift is working as the pay desk is on the first floor, thankfully it is so that is ok. I was served by a very polite and pleasant young lady so paid the bill and now off back down to go to boots the chemist.

Boots the Chemist, Portsmouth
On the way to Boots I decide to stop off at Samuel's the jewelers to get a new Watch strap fitted to my watch, got served by a very good assistant and it was a good easy store to get around with the wheelchair. anyway off into Boots the Chemist, now this is not an easy store to get around in a wheelchair which I feel is strange as it is a large chemist store, anyway get what I want ( ref Barclays bank quote)  and then off over to Marks and Spencer,s  and the food dept.

Marks and Spencer,s, Portsmouth
The one thing I do enjoy is Marks and spencer, s food, Always have and always will, however I just need a couple of ready meals that I enjoy and that I can Puree down, No. 1 Is the haddock in a cheese sauce with a swede and carrot mashed potato and Cabbage, this meal puree,s down a treat, the secret with the cabbage is to add some butter to it before you puree it. and No.2 is there Roast pork ready meal with new potatoes, carrot and cabbage, again the pork slices are very well cooked and tender and it all puree,s down a treat, so get that and then decide we will go and get a coffee before heading off to Asda at fratton, cant believe we have been down here almost 2 hours.

Benjy's Commercial road
I always find it difficult trying to eat when out due to the Dysphagia, so try to have soup, anyway thought we would try Gregg,s for coffee and soup for me and coffee and Sausage roll for pauline ( Got to feed the old girl to keep her strength up LOL) anyway Surprise Surprise No soup, hats Ok I said I will have a large cookie, I can dunk that  "Oh Dear No cookies " not very helpful staff at all so try next door at Benjy,s not much better but at least they had cookies so that saved the day, very unhelpful staff  here as well despite the fact the notice in the window states that all staff are trained to assist disabled people, someone should tell the staff because I don,t think they know.

Oh well fed and watered we now make our way back to the car and off to Asda at fratton for a quick food shop, not a lot to get this week so decide that we will leave the wheelchair in the car and I will walk around with the trolley, we were only in there about 30 min,s and enjoyed the walk around, gets the joints working, so get what we want ad use the self service checkout to save waiting as I am starting to feel tired after this morning and it is getting on for 1.45 pm.

We get back home about 2.15 and have a well deserved coffee, pauline helps to unpack the shopping then makes her way home, I get some lunch and will now relax in the  chair for the rest of the afternoon , and my son Gervase will be round later for an hour or so for a chat so that will be nice. anyway thats about it for today so until tomorrow, Good Bye.

Monday, August 29, 2011

Bank Holiday Monday.

My Caring Carer.
Hello Boys and girls  another day dawns, sunny and windy but I had a decent nights sleep last night only woke up 3 times  between 10.30 pm and 6.30 am so that was a lot better, the back ache is not so bad this morning either so won,t be doing anything silly today, anyway had breakfast in bed and up by 9.00am ready for the carer, Carer arrives at 9.30 and said that she had received a phone call from her company to say tat they were carrying on the morning care package until further notice

Kite Festival Southsea Common.
Pauline phoned about 11.00 am to see if I wanted to go down to the Kite festival on Southsea common for an hour or so, the weather is quite nice so Gordon will come  and pick me and the wheelchair up at 1.15, so looking forward to that, it will be nice to get out in the fresh air for an hour or so.
Gordon arrives about 1.10 and we go off down to the kite festival on the common.

Kite Festival , Southsea Common

we go and park at my son gervase, s house as the roads are choc a bloc with traffic and parking is at a premium, lucky that gervase lives at the end of Gordon and Pauline,s road but he has a garage and forecourt so easy to park there. we park the car and then go and get Pauline and Misty ( the Labrador)  and off we go with me in the wheelchair, pauline and gordon with his Kite. There are a lot of people there today and a good breeze for flying kite,s

Gordon Flying his Kite
Gordon decides that he wants to have a go at flying his kite so, off he goes with the kite, with pauline helping him, to launch it, He is not doing to badly ( LOL) but not quite up to the standard of the professional kite flyers here today,  and I do not think he has quite got the hang of it yet, or he upset Pauline ( Only Joking)

Gervase and Leanne,s House
Well we have been down here a couple of hours and I really enjoyed it but am feeling tired so we decide to call it a day and we make our way back to Pauline,s, gordon then wheels me down to My sons house to get the car and take me home and my Son is there to meet us and volunteers to drive me home, (well saves Gordon another trip) so that is nice of Gervase and I can have a chat with him on the way home

So there we are, an excellent day for a Bank Holiday Monday, Really enjoyed myself with friends and family, now to get some dinner and a evening of TV. have a good evening folks and until tomorrow, Tatty Bye.

Sunday, August 28, 2011

The Day after

Good day people and welcome to the day after "I Did it My Way" well I am suffering today for my escapade yesterday, I,s funny because I slept quite well last night, but today I am having terrible back pain, although it has tended to get easier as the day has gone on, so have not done much today, took a couple of Paracetamol, so that helped slightly. But feel like an old man of 60 today, " OOPs forgot I am nearly 68 "

My son Gervase came to visit today for a couple of hour,s he was not pleased that I walked over to B&Q yesterday and said that I should not be pushing myself like I am, I can understand what he is saying but unless I try then I will never know, although I can see his point, it is just that I need my independence back. anyway have promised him I will taper down my enthusiasm while we are tapering down the Prednisolone and wait untill I can check with the doctor as to what exercises I can do .

So apart from sitting around resting and watching TV ( Boring ) I have done very little today , although I did go out into the garden and held a bag for gervase as he did a bit of weeding for me, so now it is time to think about getting dinner, Have not really felt like eating much today but am feeling quite hungry now so I think some roast chicken with Mashed Potato, Cauliflower and Broccoli will go down a treat, "Purred of course".

So not a lot to talk about today so will get dinner started and catch up with you all tomorrow on Bank Holiday Monday, hopefully the pain will be a lot less tomorrow. Tatty Bye Everybody.

Saturday, August 27, 2011

" I Did It My Way "

In the words of the song by Frank Sinatra "I did it my way" or from the moon landing  " one small step for man" "one giant step for Frank " reached another milestone today walked from my house to the local B&Q store unaided " YESSSSSSSSS "   little by little I will regain my independence.

Woke up this morning about 2.30 and then slept on and off until I got up at 7.00 am. Not a good nights sleep at all. anyway carer came at about 9.45 and so I am now ready for the day ahead.

Decided to have lunch early today at 12.30 that was quite nice so have decided that I would go out to see how far I could walk today, the weather is not to bad, sunny but a little breezy and Portsmouth are playing Cardiff at Fratton park today so there will be a few people around

took my time and walked slowly and got to the local B&Q store, that was a journey well worth doing, saying that once I got there I needed the electric scooter to get around the store, but well worth the effort, saw some of my old workmates so had a good chat with them, catching up on all the news.
There was a lot of people around going to the soccer match, the one thing that really got me was the smell of the burgers, I so wanted one but can,t eat or swallow them due to the dysphagia (but one Day).

Anyway, enjoyed the walk over now to get back home, cheated here and got a taxi to the local tesco, got some milk and chicken for dinner tonight and walked home from there so all in all a good although exhausting afternoon, anyway got indoors, changed and made a coffee and then decided to have a short nap in bed
. slept for about 40 mins and then woke and feeling refreshed so pleased that I made the effort, knowing I can now relax and take it easy for the rest of the afternoon and evening.

Good end to the afternoon Portsmouth drew with Cardiff at Fratton Park the final score was Portsmouth 1 - Cardiff 1 so on that note Cheerio until tomorrow.

Friday, August 26, 2011

Friday again.

a happy carer
Where has the week gone, it only seem like yesterday that we were starting the week with the folic acid tablet, and now its Friday and time for the Methotrexate. it has been a pretty good week as Myositis weeks go, many positives with a few negatives thrown in just to keep us on our toe,s

a not very happy tax man
Tuesday was a good day shopping down Asda with Pauline and also received a copy of the letter my Neurologist has sent to my GP detailing the treatment plan for the next few weeks, reducing the Prednisolone, and going for blood test fortnightly and also to make sure I have the flue jab this year, and  then on Wednesday reduced Prednisolone down to 20 mg per day,  feeling I have less energy and slight joint pain but not anything that I cant control at the moment, hopefully we can taper the Prednisolone down to the 10 mg daily without to many setbacks.  Received a letter from the Neurologist today for my next appointment on the 9th November and then on Thursday received a letter from the Speech Therapist about the Dysphagia, she is writing to my GP ref a referral for a Barium Swallow to see how that is progressing prior to an exercise regime to help with the swallowing although it is improving slowly. and then today received a letter from the Inland Revenue to say I have overpaid Income tax this year by £20.00 so they sent a refund. so all going in the right direction this week.

Had the assessment from the Adult social care team on Monday, so waiting to hear the outcome from that but in the meantime they are continuing with the morning carer from the enablement team from Queen Alexandra Hospital.

Got a Tax Rebate
So in reflection of the week it has been an interesting week and as I said at the start of this posting many positives with a few negatives thrown in but all in all I am:-

(1) reducing the Prednisolone,
(2) staying at 15 mg Methotrexate per week on a friday,
(3) reducing blood test from weekly to fortnightly,
(4) sleeping slightly better, and breathing easier with the cooler weather,
(5) and to round it off I am  £20.00 better off with a Tax Rebate. !!!!!!!!! Yahoooooo !!!!!!!!

As I sit here the sun has come out and lots of blue sky around, so looks like it might be getting better weather for the Bank Holiday Weekend, I had a friend come in and see me today for an hour and he was saying that the traffic was bad coming into Portsmouth, probably the holiday makers arriving for the long weekend.

Well a short posting today so until tomorrow Cheerio to you all.

Thursday, August 25, 2011

I am Knackered.

"Hi Ho", "Ho Ho",
its off to Frank,s I go,
I will get frankie working hard,
"Hi Ho", "Hi Ho"

This is probably the song "Slave Driver Pauline" was singing when she left home this morning.

Woke this morning about 6.30 am, not a bad nights sleep woke a couple of times during the night but all in all had a decent sleep. the weather is not that good this morning heavy rain and very overcast but hopefully it will clear up later on, Had breakfast at 8.00 am and carer came about  9.00. am. Pauline phoned at 9.30 to say that as it is raining, we would sort out a couple of cupboards in the back room rather than go down town , and she would also go into the doctors and pick up my Prescriptions and drop into the chemist on the way to me. and that she would get to me about 11.30 am.

Pauline arrives about 11.30 and we have a quick walk round to Tesco in Goldsmith Avenue as pauline is feeling hungry and wants a sandwich, anyway gets that and then back home for a coffee, Pauline thinks it will be a good idea to sort out one of the cupboards in the back room "Shush don't tell her but That is a good idea" anyway I sit on the bed and Pauline gets the stuff out of the cupboard and I sort through it, it takes a couple of hours and towards the end I am starting to feel tired and the arms and shoulders are aching, but I can rest this afternoon so not to bad,

Well that was a good couple of hours spent, sorted out a bag of books for pauline to take to the charity shop, found a bag of craft materials for another charity and a lot of paper etc for the recycling bin and also now have 2 empty shelves to fill.

It is now time for a coffee and a rest before my son Gervase visits this evening at 6.30, so until tomorrow, tatty bye.

Wednesday, August 24, 2011

It's a lovely day today.

On the Computer

well here we are again,back on the computer getting bored and producing cartoon pictures, still it passes the time and keeps me from going round the bend. Just reduced the Prednisolone down to 20 mg per day from today so hopefully will not find I lose to much energy or get to much joint pain.

Carer Grooming me ???
Well its been a good day today so far, slept fairly well last night and got up this morning about 7.45. had breakfast and waited for carer to arrive to get me groomed for the day, The regular carer is on holiday this week so it is a different carer every day so far this week and today she didn't arrive until 10.45 still better late than never I suppose.

A short walk to Tesco

Decided that seeing as it is a nice bright day with a slight breeze I would see if I could take a short walk down the road with my cane, as the breathing seems to be a lot easier today ( Its all to do with the humidity), anyway managed to go out for about 20 min,s ( round to Tesco and back) so not to bad and enjoyed that.

Phoned the doctor today as my Fresubin Drink has been left off of my repeat prescription sheet and I feel I still need that as long as I am on a puree diet, had a chat with the GP, and the Fresubin, has been put back on to the sheet so that is OK.


Had a phone call from the Doctors secretary today re the wheelchair application, the form has gone in to the NHS, and should hear shortly, at the moment I have a wheelchair on loan from the Red Cross but that is only a temporary loan and I need something more permanent for the time being.

Not much more to say about today really, it has been a decent day for me so will now think about getting my dinner sorted and then plan out tomorrow,s agenda as Pauline will be round tomorrow and hopefully we may get out down town to the bank if the weather is nice,so until tomorrow Cheerio.

Tuesday, August 23, 2011

A Busy Tuesday

Hello one and all and welcome to another busy Tuesday, slept ok last night only woke twice between 10.30 pm and 6.30 am so pleased with that as it is going to be a busy morning. looked out the window and it is very grey and wet outside today, best place is going to be in bed i think, so think I will have breakfast in bed today and contemplate the day ahead, Feeling a bit of joint pain today, don't know if this is to do with the tapering down of the Prednisolone or the fact that I was bending over scrubbing out my dustbin yesterday, a bit of both I suspect.

Well had breakfast and up by 8.30 am, carer came at 9.15, so that is OK and pauline phoned to say she will be round at 10.40 and then we can go to Asda at the bridge centre at Fratton to do some shopping for the week, I will do what I did last week and leave the wheelchair at home and walk the store using the shopping trolley for support, if it get to much then I will go and sit for a while while pauline finishes the shopping..
Pauline comes and collects me and off we go to Asda.

Well we got to Asda OK and so far so good so go and get the trolley and off we go, me like a bull in a china shop and poor pauline trying to get me to "Take it easy" still we get into the store and get the shopping done , didn't take as long as last week but starting to feel tired and aching , especially in the shoulder and hip joints,will be glad to get home and sit down with a coffee but need to call in on the chemist first for a few essential supplies, at least its in the way home.

Well back home now, shopping unpacked, and having a well earned coffee, that was a busy and tiring, but enjoyable 1.5 hours but enough for today, think I will be taking it easy this afternoon, and then my son Gervase will be in to visit on his way home from work this evening so all in all a good day, but it is still raining. so now for a quick nap and then think about what to have for dinner, a couple of sea bream fillets with a white sauce and Mashed potato should go down well tonight. ( Purred of course), so until tomorrow. Tatty bye one and all.

Monday, August 22, 2011

A good day today.

Hello again and good morning/Afternoon. the weather in Portsmouth UK is not to bad today, it is sunny but with some cloud cover and with a light breeze. Temperature of 20 c and a 56% humidity.

Well not a bad night last night, after my trip out to B&Q with my son Gervase yesterday I was very tired and went to bed at 10.30 pm last night, woke about 11.30 and again  at 1.15 am and 2.30 am. so got up about 3.00 am and made a drink, went on facebook for 30 min,s and went back to bed about 4.00 am slept through until 6.30 am, and then until 8.00 am, so a better 2nd half of the night,.

Well must say I feel a lot more refreshed this morning so now to get Breakfast, then ready for the carer at 9.00 am, My sister will be down at 10.00 ready for my home care assessment at 10.30. a busy busy morning ahead.

10.45 and the social service lady turns up to do the assessment, She is part of the re-enablement team and is doing the assessment that should have been carried out 7 weeks ago, however at long last it is being carried out now.
After 1.5 hours of questions it looks, as expected that I will be moved from the re-enablement team to the Adult social care team at Portsmouth City Council, the panel apparently meets on Thursday so next week I should hear from Adult social care, which means they will then come round and do a at home assessment and decide what I do or do not need . ( What a Palaver this is turning out to be )

Well everyone has now gone and sanity returns to the household, what a morning that has been, at least I am now pleased that the social service care team is now responding, although a bit late,  so I think a nice puree sausage and mash for lunch and then a little bit of daytime TV to get myself back into some kind of normality.

so until tomorrow, adios amigo,s.

Sunday, August 21, 2011

Its Sunday folks

Hello one and all another day dawns, Blue sky and sunshine , but the air is quite heavy today so need to use the inhaler later on I would think, however after a false start had a fairly decent night and woke about 7.30, so time for a coffee and then get up by 8.00 am and get  ready for the Carer, if one urns up today ?

Hooray, Carer turns up about 9.20 am, its one of the regulars so that is a relief, she said she wondered why I was not down with her for a visit yesterday, so I think that was probably a cock-up by the company yesterday.

Now that the carer has been I can get my breakfast sorted and then have a wander round the garden, noticed yesterday a lot of weeds starting to appear now that the Buddleia has been cut right back, still Gervase is coming today so we can go to B&Q and get some weed killer and have a go at the weeds

Anyway, had some puree porridge , for breakfast and then on to facebook to see who is around. must put some work into my "Myositis in Focus website " as I still have a lot of info to add and I am getting about 80 hits a day on it now so people are finding it and also finding it helpful according to the emails I receive.

Me in a tie ready to go out.
Just checked the time, it is 12.45 time to get some lunch, ( chicken soup I think) and then get changed. Gervase will be round about 2.00 pm and then we can go over to B&Q for the weed killer. it a nice feeling to get ready with shirt, tie etc to go out although it takes time to get ready, it is well worth the effort.

True to his word My son Gervase turns up at 2.00 pm so we get out the wheelchair and off we go to B&Q. its not to far from home, about a 10 min walk and it is a nice day so it is pleasant to be out in the fresh air,

My Son Gervase
Well we get to B&Q and it is not very busy so take a slow walk around, get the weed killer and a hosepipe for gervase as well, not many of the staff here now that I used to know when i worked here, but saw Bill, Janet and Betty, so had a nice chat with them and then make our way back home, not been out long about 1 hour 20 mins but that was long enough, so pleased with that.

When we get back home, gervase goes out to spray the weeds in the back garden, while I make a coffee and sit and watch, giving advice now and then LOL.

Well Gervase goes at 5.30 so I get myself dinner and then settle for a night in front of the TV, its been a good day today, and I enjoyed it, and looking forward to tuesday when I go out shopping to Asda with Pauline, well tomorrow I have the Social care home assessment tomorrow so that will be interesting, my sister Eileen will be coming down for that so will let you all know how that goes in tomorrows posting, so until then Tatty Bye.

Saturday, August 20, 2011

Here we are again, Happy as can be

Hello again everyone and here we are again, another saturday arrives and with it the sunshine. It looks as though today and tomorrow are going to be nice and rain re-appearing on Monday. The temperature is a decent 20 c and 52% humidity so not to bad on the breathing, but for some reason I seem to have an excess of Acid Reflux today ( wonder if I can blame that on the weather ).

Got up about 8.15 am,( not a bad night last night but still woke up every couple of hours but then dozed off again so not to bad) but the carer failed to show this morning, I left it until about  11.30 am then phoned the company, only to be told that the carer came about 8.30 but I did not answer the door so he left a note ???. I told the girl that (a) I was up at 8.15 and that (b) no note was left through the door, her reply was that maybe I did not hear the door and maybe I picked up the note with the mail or paper and put it in the bin, to which I had to remind her that although I am 68 it is my muscles that are weak, not my brain or eye sight. I think that probably upset her because she put the phone down on me so I have had no face washed or Hair combed today .

Decided I would go for a short walk round to the local tesco express to get a Newspaper, as it will get me out of the house and give me some exercise, anyway just seen Chris, my neighbor who lives opposite and he said he would walk round with me , so that is good to have a bit of company and a chat, so if we do that then when I get back I can think about what to have for dinner.

Well Enjoyed the walk and the chat and now to get dinner, Think I will have puree roast Chicken Tonight with Mahed Potato, Brocolli, Cauliflower,Swede and Carrot, with plenty of chicken gravy and then settle down to watch the Nicholas Cage film " National Treasure " on BBC 1, Now " Where did I put that Chicken ? "

Well thats another Saturday over so until tomorrow,I will say have a good evening .

Friday, August 19, 2011

At last they listen

Good morning/afternoon one and all and so we reach another Friday and another 15 mg of Methotrexate. it seems that it has not given me the adverse effect of previous Fridays so perhaps I am getting used to it, but certainly as I reduce the Prednisolone I can feel that my energy levels are dropping just as the Neurologist said they would until the body starts to produce its own steroid. At least it gives me an excuse to have a doze in the armchair.!!

The weather is a lot more settled today , a bit of sunshine and some cloud but a lot better than yesterday,although we missed the flash flooding that they had in Dorset thank goodness, the air is a bit heavy today so not to good for the breathing

At Last they Listen

After discussions with my son yesterday evening I decided to phone adult social services again today to see about getting an assessment of my care needs in the home. As those of you who follow my blog know I have been asking about this for a few weeks now, I had the original assessment in hospital for my release home after diagnosis of DM, and was released home on the 25th May with a 5/6 week limited care plan, which was supposed to be reviewed after 6 weeks, This has not happened, however today I have had some success, I spoke to the department this morning and the phoned back and arranged to come and do an assessment in the home on Monday.

It was hard work and determination to convince them that my care needs had changed over the 13 week period that I had been at Home, My medication dosages had changed and so had my mobility, and with it my need,s anyway perhaps now we will get some results.

More positive news, Just phoned the Doctors and the blood test results for this week have come back Normal so that is a good result, so all in all a decent day today, just hope that I can soon get a decent nights sleep, as I am reluctant to go down the sleeping tablet route, I take enough med,s as it is and do not want to take more