Swings and Roundabouts.

It is a cold bright and sunny day today the first cheerful day for a long time here.

The last traces of snow are also gone now, soon be February and the first signs of spring.

We do not get to see or feel the first signs of spring so strongly here in the city, not in quite the same way as in the country.

Living in Reading I noticed the change of the seasons more clearly than here in Amsterdam.

Then again there were no Turkish or Moroccan shops in Reading but there was an excellent Polish delicatessen.

It is all swings and roundabouts, here there are grachts and bridges and narrow houses and many house boats.

Feeling confident about life right now, talking as much as we do really does help us both to cope with our lives now.

Richie recently had a look at several kitchen appliances; he bought a bread making machine and an excellent juicer.

Fresh juice is so good, have been enjoying delicious apple juice and other mixtures such as carrots, dates and orange.

We had our new fridge freezer delivered this morning, Richie is pleased with it, it is half freezer and half fridge.

So now Richie can take advantage of bargains and cook and fill the freezer, he thinks it will be extremely useful.

Like the sound of cauliflower cheese and lasagne and stew and curry or ravioli all being on the menu.

Anything that makes Richie's life easier is very ok with me; our old fridge was 10 years old so it was good timing to get rid of it before we had a crisis.

Remember getting the old fridge, we had got a small fridge from the same shop but it ceased working while the guarantee was valid.

When we went back to the shop, the shopkeeper joked how his calculations had gone wrong this time, he preferred a fridge that broke after the guarantee had expired.

Then he roared with laughter, at our shocked faces, before showing us a fridge with a freezer compartment and letting us have it at a large discount.

We were happy at the time as having any freezer space was brilliant now we needed to move on and update our appliances and wse have.

What I am also happy about today is getting connected without any problems, not after Richie found and ran a diagnostic tool yesterday and when it asked if he wanted the fault repaired he pressed yes.

Seems there had been a low signal, which had been causing the connection problems, this has now been happily resolved

So hope never again to have to do without the internet and my blog like I did for several hours recently where I could only play free cell and long to visit blogs.

Everything seemed to lack substance

Writing about how to handle the many assessment interviews got me thinking as did the comments that I received.

Remembering how it felt not knowing how to deal with my first assessment, I was totally lost what to do, how to handle it.

It is not something that you have generally got any previous experience of and certainly no training to be handicapped.

Perhaps I should mail people from the Rehabilitation clinic, RCA, and suggest that they should give people a short training session about asking for help.

People need to be made aware of their new situation, that they have to cope with allowing someone strange ask them lots of detailed personal questions.

As I had only just got my diagnosis I was still in shock, it was extremely scary for me and I guess for my darling Richie too.

At my first assessment I was too keen to show how well I could still stumble around, too frightened to admit that I was really scared about the quick progression of my MS.

Found it impossible to find out too many details about the progression of my MS, right after diagnosis, in fact I preferred not to talk about it at all.

Did not want to know, kept well away from the computer and if I used it, it was only e-mail, the internet was too worrying.

When I did look I fond it too confusing, there is a lot of information about MS on the internet.

Some of it very contradictory also found there were offers of cures none could be backed up by scientific research.

There were also many diets for MS, again I could not find any scientific basis, and there was a lack of research and reliance on self reporting and observation.

These diets are reasonably balanced and would I am sure be better than the average
Western diet.

Everything seemed to lack substance.

Sensitivity is Essential in Assessing Needs.

Was pleased that there was such good feedback about the importance of being very clear with the people that assess us in order for them to see what we need.

Being honest with the assessor is very important, but this can be extremely difficult for us as we have our pride.

It is very difficult to be able to cope with being assessed, especially when you are just becoming disabled, it is almost too much to cope with.

Assessors need to be able to clearly see the client's disability and they need to understand that the stress of the illness and disability may make it difficult to ask for help.

Did notice that in the beginning I was trying not to see the full extent of the disability that my Primary Progressive MS was causing.

The assessors really need to understand that when the client states that they can something that they need to see what they can actually do and not what they hope they can do.

It is important to see what a person can do without crushing someone’s spirit by being insensitive.

Mary @ Travelogue for the Universe got me to think about the consequences if the assessor does not treat the client as sensitively as possible.

http://traveloguefortheuniverse.blogspot.com/

She pointed out that insensitive approach can break a person’s spirit:

‘Why take something more away from the client’ and ‘People who have faced maximum stress and survived are stronger and more resistant to help’.

They need to preserve the person’s dignity at all costs especially when their progressive disease has already taken so much away.

Wet Grey And Rainy Saturday.

A very dark overcast day with wet snow that is melting right away, Richie has switched on the TV and gone off to clean the kitchen.

Not really watching the football treating the telly as a radio, suits fine while I am writing my post.

Slept well last night, Spike left the room without protesting; guess he just decided he wanted a biscuit more last night.

Been thinking alot about my first assessment visit, how I told the assessor I could get down the steps with someone moving my right leg down step by step.

Did say that once I was at the front door that was as far as I could go that I could not walk any further.

My mistake was not loaning the wheelchair right away from Thuiszorg (Home Help) and sitting in it during the entire interview.

Should not have done the talking should have let her do that, and just answered the questions.

I even showed her how I could still get around indoors, which was by holding on to everything around me including doors, walls and furniture.

Instead of this telling her, that I had big problems she took this to mean that all my problems would be solved by a downstairs apartment.

I saw a few, none of which were adapted, some I could not get in the door in a wheelchair, one place, I had to get out of the wheelchair and Richie got it in somehow.

The hall was a claustrophobic horror, think this could have triggered off panic attacks, it certainly did that day.

Shame I did not know all this at the start, then I would have had a better chance of getting the things that I needed maybe even when I needed them.

Oh well that was then and this is now, the wet snow has been replaced with lots of rain and it is getting dark early.

Intend to relax and enjoy the late afternoon and evening, life is better now that the course of antibiotics is finished and my bladder infection has cleared up.

Who cares what the weather is like outside this Saturday in January, when we are happy indoors.

Brilliant News.

Brilliant news last night, suddenly not long after Mort @ Caring and Sharing had talked to his local Member of Parliament.


http://mortonlake-caring-and-sharing.blogspot.com/2010/01/coincidence-or-not.html

He suddenly got a phone call from Social Services and he now has an appointment next week to be assessed for a new care plan.

And not before time too seeing as he first applied to be assessed last year in September.

Glad that finally something is happening, hope that the result is better help for Mort's mum and for Mort himself.

Brilliant work by Mort getting straight on to his MP and as so often is the case the current MP has a direct line of communication into Social Services.

Which they used and the result is an appointment next week for an assessment of their needs.

Hope you give it to them straight show them how hard it is for you to cope Mort.

Don't do what I did at my first assessment where I was trying to cope and did so well she did not give me the correct classification for being re-housed.

Nor did she give me the type of wheelchair that I needed, she recommended a collapsible wheelchair and the RCA said no it must be a solid frame, as I am in it all day.

Luckily I was referred to the Rehabilitation Clinic (RCA) in November 2006 and they spotted the mistakes right away.

They advised me about the wheelchair and they got my housing reclassified, mind you we still had to wait another 6 months for our new place.

Waited a year for our new apartment, where I could come and go without being carried up and down the two flights of steps as I had been for 9 months.

Shame that the Housing and Social Services can not act quicker, if we had got a new place in the summer of 2006, I could have had some independence , as it was by the time we had moved I could no longer go out no my own.

Good to remember to never underplay anything with people assessing you, show them warts and all and remember it is just business for them so guess we have to treat it the same way.

Hopefully that way we will get the care, support and the aids and appliances we need.