An ode to Dermatomyositis.

Ode to Dermatomyositis.

With a kind of a hop, and a kind of a skip.

Now you are having a laugh

I throw myself out of bed.
If i"m lucky I know , I will land on my toe.
But if not I will land on my head


It does not surprise me, the way it all goes.
Some days I just ache, From my head to my toes.
But other days come, And  can be so much fun
Then all of a sudden, I land on my bum.


But of one thing I,m sure,  When my muscles are sore
Its because I have over done it.
So I must learn to rest, when put to the test
For  this Disease, I will overcome it.

A Good nights sleep.

Don't know what made me write that, just seemed like a good idea at the time, well another decent nights sleep last night. bed at 11.00, woke about 2.30 for bathroom and then slept through until 6.45 so a decent sleep again, still got the ache,s in my legs today but not as bad as yesterday so starting to settle back down again ready for shopping down Commercial road tomorrow with Pauline, but at least I will take the wheelchair.

Amanda my happy carer.

Got up and into the front room by 8.00 ready for Amanda the carer who arrives at 8.15. I tell her about then canceling the carer yesterday and she is not pleased but I tell her that I will be phoning Adult Social care at Portsmouth City Council (PCC) this morning and letting them know my feelings on the matter, anyway get my face and neck washed and hair combed and then I am ready for the day ahead.

So amanda goes on her way so I go and get a shave, Text pauline to let her know all is OK and get myself a couple of wheatabix for breakfast. once breakfast is over I go and have a shave and get myself dressed, check the weather and although it is mild today it looks like it is going to be a damp day today so get myself round to Tesco express to get Milk, Sugar, and something for dinner tonight and then back home to Phone PPC.

Misty on the common.

Back home and it is now 10.00 o-clock, Pauline phones to say she and gordon are OK. Gordon went for Blood Test at 9.05 this morning and has now gone off to work and Pauline is about to take Misty out for her morning walk.

I now phone Adult social care and explain the situation to them and the lady I spoke to said she would pass it on to my case worker and someone would phone me back to discuss it with me and see how we move forward from here.

Me and Pat c 1947 Pat is the younger one.

So that is OK so I settle down with the TV and the laptop, see who is on facebook and a couple of the other forums I use like Ebid, when all of a sudden there is a knock on the front door, Expecting to find someone trying to sell something I open the door and it is my brother Pat come to see me.
Pat is on the way to Selsey to do a job and decided to come and pay me a visit for an hour which is nice, I make the coffee and we sit and chat for an hour or so and then pat makes a move to get on with his work and I get back to the laptop,

It is now 1.00 o-clock so decide to get some chicken soup and a couple of crisp bread with butter for lunch so get that done and sit to eat that, halfway through lunch the phone rings and it is the chap from Adult Social care on the phone to talk about my problem with my home care at the weekend,s.
He suggest that maybe the way to go would be with direct payment where I receive the cost of the care that PCC pay direct to my bank and I then arrange my care and make the payment direct to the carer. this may be the way to go, but I am not sure, anyway I have asked him to arrange for someone to come round and explain the pro,s and con,s to me  and then we can see where we go from there, in the meantime I will carry on with the same company, he Is also going to phone them and ask them to ensure that they provide the service to me that meets my needs, so we will see how it goes over the next week when my carer Amanda is not here on the Thursday and Friday

So There we have it I have phoned PCC but will not hold my breath as I have not got a lot of confidence in their ability to sort out the care company, anyway time will tell and also it will be interesting to find out about the direct payment scheme.

Tonight,s dinner

It is now 4.40 and nearly time for Pointless on BBC 1. and then to think about dinner at 6.00 when that ends, (I am having a Tesco chicken and bacon Pasta ready meal tonight, these are easy to do and puree down very well and I will make extra cheese sauce to go with it "Yum Yum") so that I can get ready for an evening of Emmerdale and Coronation Street on the TV tonight, don't I lead an exciting life. anyway time to get myself comfortable ready for pointless so until tomorrow and the shopping trip and New Glasses I will say Adios.