bloody blogger!

this is the first time I have been able to get into blogger since my last post- I did try to blog more frequently but this damn site has made it impossible so I give up- no more

Herrad is hurting very bad.

We had a talk last night. Herrad could not hold back. All the fear frustration and pain flooding out. This is just so bad. We just wanted to get old together and she knows she will not be there with me, all we want is each other- we are a boring couple.
This is just so cruel and so hard to live through. She is in so much pain and nothing I can do makes it any better. I feel like a jailer working for MS not a care giver. She is not going to be with me and then what do I do?
Oh this hurts so much..so much and I can't do anything to make it better. I love her so much and I can do nothing to help her. MS is so nasty.

It works!

Putting up a post did it's job. I did find sharing the guilt I feel about Herrad's condition helped me contextualise it. I feel a lot better today. I took it easy and watched rugby all day. I love the six nations championship. I feel very relaxed.
I will try to post a little more often. It is so nice to get supportive comments but the big thing is just expressing things that I can say to know one.

Back to moan.

I got a comment months after my last post- thanks Olivia. Ok am I going to do a second post soon? I don't really know. Right now I want to write something again. Last time I got so sad I could not write so I stopped trying- I found myself crying over the keyboard and unable to find words.
When things go wrong I take it to heart. I want to make things good so much that when things go bad I feel the lowest form of life on Earth.
Yes you guessed it- things are crap at the moment and I feel like it is all my fault. Herrad's decubitus wound has opened up again. A pressure sore- it was a monster; if you have never experienced a pressure sore do what ever you can to avoid the experience- my experience of Herrad's is in previous posts but understand that people die from pressure sores- gangrenous holes bone deep. I washed dead flesh out of it everyday for months. It was terrible.
Right now it is just a layer of skin scraped from the scar but it is enough to put Herrad flat on her back till it heals. Somehow it got open again. What did I do?
I think we have stopped it getting infected and it is starting the slow process of recovering. We do not know how long it will take and the spring weather is just starting so frustration levels are going off the register.
By the way I like to put rubbish in my tags just to drag poor idiots to this blog.

oh shit

I am very down today. Yesterday I nearly killed Herrad. Screwed up good and proper. I took a road crossing too quick and pitched her out the chair... we got away with only minor damage to the chair and a small bruise on Herrad's head. I am gutted.

Agis screw up again.

When some one puts up a real fight to make something good out of a bad situation I would have thought the organisations that are there to support them would be able to do their part.
Herrad has been let down again.
Her muscles do not support her torso so she can not sit up- she slowly moves to one side or the other and has to be sat up to stop unbearable strain being placed on her neck- she has a neck injury which is easy to aggravate and causes great pain. I prop her up best I can with cushions and on a good day this enough- on a bad day I have to correct her position every few minutes.
Her medical team advised a special cushion be made to give her the support that will make her able to sit comfortably. The insurance company (Agis) agreed and she was measured up. The cushion was to be delivered this week but Agis is now in dispute with the supplier so they have stopped the whole deal.
We find out on the day the cushion should arrive.

Waiting bloody waiting!

Herrad is getting worse at a pace. She is loosing the use of her arms and is less able to support her self- nothing we can do to stop it but there are things that can help. We have got an agreement with the health insurance that support cushions are needed to hold her up in bed- we have had the agreement- the order has been placed and we are waiting waiting waiting- this has gone on since February. The only change is Herrad needs them more and at last we have been told we shall get them this month- it takes a few hours work to make a cushion- half a day, my Aunty Peggy could cover a three piece suite in an afternoon, shame she is to old to work now or I would have sent her the contract!
Herrad has agreement to get the joystick on he chair changed to one that requires less effort to control. We have been waiting since March for them to make an appointment to do the job. I fear she will not be able use the new control by the time it arrives. Herrad has no time to waist waiting. We are supposed to get air-co but it seems that the decision can not be made for two months- then another wait whilst it is implemented (if it is agreed) so we should be getting air-co for the start of next winter. I am so frustrated!