all systems go

Good morning one and all, so here we are again, another Wednesday dawns, bright and breezy here on the south coast, not a bad night last night went to bed early about 10.30 pm woke at 1.30 am  and again at 6.00 am so not to bad, well today I reduce my Prednisolone again down to 13.0 mg per day so getting nearer to the 10.0 mg baseline that the consultant wants me to get to.

The carer came today at 8.30 so I am all groomed for the day so will take the medication and see how the day goes on the lower dose of Prednisolone.
hopefully by reducing at a slower rate will be better for me.

Sat at the computer and at 9.30 there is a knock on the door and it is the builder. He has come to put the cap on the bay window, this will take about 6 hours so at least that will all be done and weather proof for the winter. He did the repair and decoration a couple of weeks ago, but had to order the fiberglass roof and trims for the bay, and these arrived on monday



Not a lot to report today, it is now well into the afternoon and all is going well. The bay is finished, I have not felt any reaction from the lower dose of Prednisolone, and my appetite is growing so time to get some food on the go so until tomorrow,  Tatty Bye.

Woo Hooooo Its Tuesday

Hi One and all and another day begins, had another decent nights sleep again last night, went to be about 11.00 pm and woke up at 3.30 am went back to sleep almost straight away and woke again at 6.45 am so a good 7.5 hours total sleep,

Eastney health centre.

I should be so lucky

Time to get up, make a coffee and get ready for the carer, she will be here earlier today as I have to be at the Eastney Health centre at 10.35 for the fortnightly blood test, used to have them weekly but have now changed to Fortnightly and then if all goes well to Monthly in October, At least Debbie will be back from Holiday now so should have no trouble getting the blood. 

Sainsburys Portsmouth

Pauline arrives at 10.10 am, so she load,s the wheelchair into the car and off we go, only a 10 min drive to the Health Centre, so plenty of time, unfortunately Debbie is running late, My appointment is for 10.35 and we get into see Debbie at 11.10, so that as put our schedule back, anyway give the blood and off to commercial road to the bank and then to Sainsburys, to get some shopping   

its a long time since I have been shopping at Sainsburys in Portsmouth and I must say I am not Impressed, with the products so will stick with Asda in future I think, at least I know I like the products they sell. 

Got some shopping and now back home for a well earned coffee I think, it is now 2.15 and we have been out 4 hours so am now starting to feel drained of energy, as although I used the wheelchair in town to get from the car park to the bank and back, we left it in the car at Sainsbury and I walked around pushing the trolley, so a rest this afternoon is in order I think

but all in all a good day so until tomorrow, adios.

A Windy Monday

Good morning one and all so here we are another Monday, woke this morning to the wind blowing around the house, not quite gale force but not far off, quite a bit of rain as well so not a good start to the day for the weather, Me on the other hand am sure that this week will equal last week. Last week was a good week for me so hopefully this week will be as well, so despite the weather I really must get out of bed ready for the carer when she comes.

I had a good night,s sleep again last night, not as good as Saturday night, but better than most nights I have had, went to bed about 10.45, woke up about 2.30 am went back to sleep and woke again at 6.30 am so not to bad, anyway as it is monday must remember to take the Folic Acid Tablet and then coffee and ready for the carer who will be here in 30 min,s at 8.30.


I have decided today to go over to B&Q again to catch up with my old workmates, I can take my new wheelchair and walk over pushing that, so if I get tired I can then sit in it and propel myself around, that is the best thing about having the wheelchair with the large wheels at the back it gives me that independence,




That is good, the sun has come out and the blue sky,s are overhead, although it is still windy it is not as bad as earlier on so the trip over to B&Q is all systems go.
Have arrived at B&Q in one piece, walked over pushing the wheel chair, had to rest at one point for 5 mins but apart from that it went pretty well , so will now sit in it and propel myself around the store for a bit  have a chat with a few ex-workmates and have a coffee then make my way back home.

Well back home now, that went well, better than I expected, walked both ways with the wheelchair stopped for a rest in both directions but I did it, although the muscles in the legs are hurting, it is not to bad, so I think I will get a light lunch and then rest for the rest of the day as tomorrow will be a busy day as I have blood test at 10.30 am and then down the shopping centre with Pauline for the weekly shop, so until tomorrow Tatty bye to you all.

Another week begins

Hello to everybody and so another week begins, On reflection last week was a very positive week for me, although it had its moments it was probably one of the best weeks I have had since my diagnosis of dermatomyositis in May this year.

This week has seen me come down to 15 mg daily on my Perednisolone, and next wednesday I will be dropping to 13 mg daily, so the tapering down is going to plan at the present time.  Also it seems that the Methotrexate is starting to take affect as I am not flaring as much as I was a couple of weeks ago.

Certainly I have felt that as the week went on (Apart from Tuesday) the days have been really positive, I am walking further on my daily walk,s. and not feeling so fatigued afterwards as I was, even on the lower dose of Prednisolone although I must admit there were a couple of days I went to bed for an hour in the afternoon.

I had my new wheelchair delivered on Wednesday, so used that when we went down town on Thursday with Pauline, it made a big difference to be able to propel myself around the stores, kept losing Pauline, but sure that she didn't mind, also on Friday ate my first solid lunch, Crisp bread with pate and butter, not a big deal for most people, but seeing as I am on a puree diet, it is another step in the right direction.

And my latest Achievement is that for the first time in many weeks I actually got a full night,s sleep last night, went to bed about 11.15 and slept all the way through until 7.30 this morning, Excellent and feel so much better today for that. So all in all a very positive week and I hope that I continue to move forward in a positive way.

After all the questions about Myositis that people ask, and the amount of people that do not know what Myositis is, and that includes Health Care Workers of all levels,I have decided to compile and produce an interactive video to help people become aware of Myositis, and to understand the disease, hopefully I will have it completed by the end of October, and it will be available Free to anyone who wants a copy.




It is nice to be able to end on a positive note so hopefully this week will be just as good onwards and upwards. so until tomorrow Adios Amigo,s.

Another Quiet Saturday

I want to sleep

Well Folks here we are again, another Saturday, I wonder what today has in store, Again not a good night, kept waking every couple of hours, still at least I am getting some sleep although in short burst,s anyway up at 8.30 ready for the carer, and then see what today brings.

Pauline and Gordon

The weather is supposed to be on the turn later today with Rain coming in later in the afternoon so will have to make sure I get round to tesco early today and get the shopping in, also must remember it is Pauline,s chap gordon,s 65th Birthday today so Think I will get him a bottle of Whiskey.

Children from Belarus

Just had a phone call from pauline to say that her and gordon will be round later this afternoon so that will be nice to see them, and to have a chat, also perhaps Pauline can get some old Box games down from upstairs for me as I promised Chris and Kim from over the road that they could have them for there charity sale that they help out at in aid of the children that were affected by the Chernobyl disaster,  they bring them over for a holiday in England.

Play up Pompey

Pauline and Gordon arrive about 2.00 pm and stay for a couple of hours, it is nice to see them and to have a nice chat, they also bring down the games for me so that helped,  Well Portsmouth are playing west ham today at Upton park. the final score was West Ham United 4  Portsmouth 3 it seem,s from the TV report that it was a lively game.

Not much happening today, relatively peaceful so will leave it now and go and get dinner started, Salmon and Mash Potato with a cheese sauce tonight, my thoughts are with our American friends as they remember 9/11 tomorrow

And so until tomorrow, Good Bye

It's a Good Day

Ahhh Coffee

Good Morning/Afternoon/Evening to you all, and do we Know what today is, Yes Its Friday, And what is Friday ? (Answers on a postcard please)  Friday is Methotrexate day, and for me that means a few hours of feeling really crap. anyway Awake early today at 6.30 am, so take the Methotrexate and then get back to sleep for an hour, wake again at 7.30 am, yes Feeling like crap so get a coffee and then up ready for the carer.

The Carer arrives at 8.30 so that is OK, so get,s me groomed and ready for the day,although don,t feel like doing much today, so take the rest of my Med,s have breakfast and settle down with the computer,

Tesco Express

Decide at 10.30 am to go and have a lie down, trouble is I fell asleep until 12.30, but awake now and feel a lot better so need to take a walk round to Tesco Express and get some Milk., while I am round there I get some butter and a small pot of Pate, think I will try something different for lunch today, decide to walk home on the longer route, funny how 90 min,s of sleep can make all the difference.

The Long Route

However I walk back home on the longer route, glad I have the walking stick with me, as about 200 yards from home I feel that I have just about done enough, maybe it was a bit ambitious but I need to test myself every so often and really, apart from the leg muscle,s aching and feeling tired it has not been to bad, bearing in mind I am also tapering my Prednisolone down and I am now on 15 mg a day ( was on 30 mg a day beginning of August ) and Consultant did say I would suffer energy loss and Increase Joint pain as we taper down.

Asda Crispbread

Now back home and time for lunch, since I have been home from Hospital ( 25th May) I have been on a Puree Diet because of the Dysphagia and the cup & Spill Stomach, I have in that time managed to eat biscuits with Coffee so today for lunch, the blender can stay in the cupboard, the soup can stay in the tin,s and I am going to try Asda Crisp bread,s with butter and Pate. Now I do not know at this stage if it will work or not but I am going to give it a try, I have managed the Crisp breads with soup, so now the ultimate test.



Well success, that worked pretty well, I have just eaten 4 Asda crisp bread's spread with butter and Pate, and also a Kit Kat, I am so pleased about that the first non puree lunch since I was diagnosed at te beginning of May this year, so Myositis 0 Frank 1.


It looks like items that are crispy like biscuit and  Crispbread are easier to swallow than, softer items like cake and bread, so will have to speak to the Speech Therapist about this and look to see what other items are around that I can try, I have also mashed my Vegetable, ie Carrot, Swede,Broccoli and Cauliflower the last couple of days rather than pureeing them, gives a bit more texture, harder to swallow, but OK if plenty of gravy to help it down.

So all in all a crap day actually turned into a good positive day so until tomorrow, cheerio.

Down Town.

Coffee time

Hello one and all, so another day dawns and again the weather is crap, at the moment it is raining and very windy, just hope it clears up a bit later on as I am supposed to be going "Down Town" with Pauline later on this morning,  but at least I had a fairly decent nights sleep so will get a coffee made and drunk and then ready for the carer.

A Good Wash in the morning

The Carer turns up as usual about 8. 30 and gets me groomed ready for the day, hopefully it won't be much longer before I can manage on my own with the face washing and hair combing as I am starting to be able  to reach higher with my right arm, and getting more mobility in it, Not there completely yet but getting their.

Matalan, Portsmouth

The Weather seem,s to be getting a little brighter so I phone Pauline and as long as the weather is OK we will be going down to Commercial road about 10 30 so as it is now 9.30 I need to go and get dressed and work out what needs to be done when we get "Down Town".
Pauline arrives at 10.30 so we get the "New" wheel chair into the car, and off we go and decide to park in Matalan Car park and get into the shopping precinct from there.

Bank Service

This new wheelchair is a bonus, at least I can manouver around with a bit more ease, which means a little more independence. Not sure pauline see,s it like that, as she keeps loosing me. LOL anyway first stop Barclays Bank, thank goodness it is not as busy as last time and the service is a bit better this time round anyway get the business done and off to Marks and Spencers

Get a couple of ready meals that I can puree down and then of to greggs for a soup for me and a coffee and Sausage roll for Pauline, at least this week they have soup so that is a bonus, things are looking up today, we sit outside watching the world go by, until we realise that it is now 12.10 and the car park ticket runs out at 12.45, and we have to do a shop in Matalan , so make our way to matalan and get a couple of pairs of Joggers  for me and a Cardigan, I have found it is difficult to pull things like jumpers and sport/casual shirts over my head with the limited mobility I have in my arms at present so use button up shirts and cardigans now that the weather is starting to get cooler. anyway shopping all done so off home now for a decent coffee and a rest.

That was an enjoyable couple of hours out with the wheelchair, I enjoyed that and chatting with Pauline, also got a card for Pauline,s chap "Gordon" he will be 65 on Sat.  anyway of for a lie down now for 30 min,s before getting dinner ready so until tomorrow I will say Tatty Bye.