What makes you happy ?

We finally have a downstairs toilet. The sparky needs to fit a light and wire that and the fan, but it’s otherwise there and working. J no longer has to fight her way up and down the stairs many times every day. This isn’t just a good thing, it’s a fantastically wonderful thing. It’s one thing to be worn by doing something you like and quite something else to have the strength to cope with the calls of nature – the second leaves no energy for the first. Add into this that the last interferon jab went well and although MS is never good, it’s on the better side of bad right now. When I get the names of the people who did it I’ll blog them because each one I would recommend without hesitation.

J’s avonex (that’s the interferon) arrives in a refridgerated van, packed in a box, in a bag, in polystyrene, in another box. Cool is important :) It also comes with a bag with a sharps bin, travel information, lots of literature and more. No expense spared.
Part of the reason she came off it was that the day following the injection she was wasted. Moving was almost impossible, she hurt, her ability to concentrate was shot. Sundays meant full-on care and all in all not good by a long way. She dreaded Sundays and would even contemplate not having the jab. She said that by Friday she was okay and that it took the week to get over the injection. We all certainly remember what it was like and it is with quite some relief that the effect is not happening this time around. There is a slightly different effect though – it takes all the strength out of her body for the night. This is not a good thing when you need to get up. Luckily I’m here :) Thing is, she is debating asking to stop the interferon again because of this but she cannot recall what it was like previously.
I’m telling her just how bad she was and that this time it’s not bad at all, but because she doesn’t remember she cannot compare the two experiences. The body does not accurately recall pain and bad physical events presumably for your own protection but this wasn’t in that league. It’s really odd that she just doesn’t remember an event that occurred weekly for several months and that lead directly to the interferon stopping last time. And this is bad because it might lead her to not wanting it again. Something neither of us want given we have established she is still in relapsing-remitting though with a lot of residual damage.

It’s very odd.

A few weeks ago I blogged that J was seeing the MS Consultant today and she would be asking for the Interferon-beta (Avonex) back. She saw him and he said Yes. (So I have no cause to have a go at him). Hopefully by the end of the month J will be back on the weekly injections and hopefully that will go some way to reducing the steepness of the deterioration curve. This is a good thing.

This isn’t about anything but bureacracy.

Like millions of others we do not own our own home and given we were working as nurses those salaries couldn’t get close to affording one around here if we were still there. So we rent. Not a problem except Jacq needs a downstairs toilet. We become reliant to a huge degree on what are laughingly called ‘social services’ and ‘councils’ as Jacq has ‘unmet needs’.

So. We ask for a downstairs toilet. The Occupational Therapist says that will not serve J’s needs forever so no, we cannot have one. She says that we need an extension on the back of the house which can have a bedroom, bathroom, toilet etc. Here is what happens:

1. We have to complete detailed financial accounts. This will entail an Accountant’s report as well
2. The council consider this.
3. The council say they will do the work if we contribute £XXX. Last time we enquired about a downstairs toilet they wanted £18000. Up front.
4. We tell them we cannot get a loan (true) but that if they let us pay them back that would not be a problem (also true). Councils don’t do loans. So this stage comes to nothing.
5. Next stage. We have to complete detailed financial accounts. This will entail an Accountant’s report as well
6. Another part of the council consider this.
7. They will again come up with a figure but hopefully less. They also ask up front.
8. IF we can meet that, then they give the go-ahead for plans.
9. Once plans are set, we enter the next stage.
10. We have to complete detailed financial accounts. This will entail an Accountant’s report as well
11. They meet to agree the plans and give the final go-ahead
12. I am told that following this “things might happen”

But:

• if the neighbour disagrees at the end (shared party wall) it all stops dead.
• if a building survey finds a fault, it all stops dead. (note how these happen at the end?)
• if at any time anywhere between a finance report being done and a meeting to consider our financial circumstances change then that stage is reset. (I asked about exchange rates, and yes, that could affect this bizarrely)
• if the landlord has any objections (which he won’t know til he sees the plans) it stops.
• if an estate agent says that the extension could actually harm the house value (which in this case it could) then obviously it would stop.

Also, if this happened then we would be taken off the housing waiting list because J’s needs were being met – even though it’s privately rented and liable at any time. Even if the landlord agrees to terms his life events would take precedence.
The above is not about us not wanting to pay – we would if they would let us. It is strange that councils can play the money markets but not give loans to the people they are meant to serve.
Accountant’s reports are not cheap.
So all that process, which takes time, energy and too many people and far too many rules, has to be gone through because the occupational therapist says we need an extension on the back of the house.
It’s like they put every obstacle in the way because they don’t want to spend any money.
All we asked for was a downstairs toilet. We don’t want the extension. But we can’t have what we would like, we have to have what they say. Of course we don’t ‘have to’ anything but it seems beyond stupid that what would cost less and take 2 days and is wanted is overruled in favour of something way more expensive which is not wanted and subject to many variables.

Councils. Nonsense.

A year ago August Jacq met the Consultant Neurologist and it was “agreed” that she come off the interferon-b. It was intended for relapsing-remitting MS and the Consultant certainly felt she had come away from r-r and probably to secondary. Jacq says it was “agreed” but he was the person with the knowledge so I feel that in the end the decision was actually his.
From that month the decline has been steady as I’m sure I’ve written about before several times. Last month it got so bad that she agreed to go on steroids. Our new GP’s eyes popped out on stalks when he saw the dose on the monitor – it’s 500mg a day for 5 days. The MS nurse had said that if the steroids produced an improvement then it was a relapse, and if not it was not. Guess what? She has improved. So that means that this last episode along with others in the last year could have been relapses and not just the steady deterioration. Of course relapses make things worse anywhere because of the continuing damage but the up/down does make it seem like r-r.
And the MS nurse said it would be r-r. Interferon-b is for r-r. So Jacq has an appt next month with the Consultant and she has already phoned to say she wants to go back on Interferon. She does not want to discuss it. She knows how she feels and she is not asking, she wants. If the Consultant does, good. If he does not….. and I do not think he will agree…… then it will become interesting. Libelous here certainly.

This isn’t a broken bone, or an infection, or a question of mental capacity. They don’t know what causes MS, they have no firm treatments for MS, it’s just research and more research. So the treatments they do have – such as Interferon – should be the choice of the patient barring significant medical contra-indications.

We shall see.

I caught Georgina on IM earlier and she’s good. I think she said it was scary at times but she’s okay. I suppose if you are going to be anywhere in Burma right now an Embassy is just about the best place.

Camera is good. Lots of photos today, all crap (clouds / sunsets are so hard to do!) and the images are fine. Don’t have an excuse for a new one.

I have a desire to trawl ebay to find something I don’t yet know I want but I just know will prove indispensible (for at least week anyway).

There was someone who once had a blog and his tagline involved henchmen for himself. Was checking some old links late last night and found the domain has expired and now has the regular ad stuff that squatters use. Which is a shame. It’s all transient …

And J is down right now. Very very down. Badly down. Really not good at all. There’s nothing to say though, nothing to do. Nothing can change what is happening and no amount of talking will make it go away. So there is nothing anyone can do. The Social Worker says see the MS Nurse who says it’s for the SW, The GP and MS Consultant will write letters and say what J needs and yet no-one listens. Silent screaming she called it the other day. So she gets no help, she is deteriorating, she gets stressed because I’m doing everything but she can’t and she sees no light at the end of the tunnel. That last part is very bad.

All I want to blog about is J’s MS and the way it’s so bad right now. I alternate between angry that no-one will do anything (Interview to be an MS Nurse. “Can you say ‘There there ?’”) and I say WILL because they say so very little and do even less that I can’t see the point in them unless there really is something they could do and the flip side from angry is sad because it’s frustrating us both.
She has no feeling in her feet, she has only gross motor movement in her hands, is numb all the right side, is increasingly numb on the left. Her BP is something like 90/60, her resting pulse is 130+ and there’s no-one to really help. She is much much worse than even 2 months ago.
Steroids are now proposed – if it’s a relapse she will improve (a relative term if ever there was one) with them (although they have their own side effects) and if it’s not a relapse and part of the slide ever downwards then she’ll not feel better. So it’s feel crap and maybe feel better.

If you are on Interferon, do not stop. Do not let a consultant talk you into stopping.

Sounds like I’m moaning or something and I’m not it’s just frustration. The same frustration that thousands of other people must feel with their ills. And it’s not wrong to feel this way. It’s not exactly productive either but sometimes bitching about something does let out some pressure.

The other day while testing the soundcard I played a few seconds of the music to Koopa Troopa beach in Mario Kart 64. We used to play that game constantly. J asks the girls to set it up and they play. Today I asked J if she wanted a game but she said she’s not very good because she can’t hold the button down to go faster. That’s sad. It’s a way of not losing too – but it’s still sad.

The MS is getting worse and the future is becoming more .. focussed, sharper. Not how things are planned but then what is?

I was so swept up in these thoughts and more I completely forgot 2 photo challenges and other work I’d got planned too. Diversions are good. I need a new gadget. And that soundcard.

A couple of months ago I told J that my Zen Micro wouldn’t hold all the music I wanted. So I bought a Zen Vision M.
That same player now has almost 3000 tracks in it, including Now 1-63, Robbie Williams, Sugababes, Kelly Clarkson and other equally wondrous sound creations. It has space for a whole heap more. This means it’s not mine any more….
This morning J asked if there was a way to have a HD but no computer that could play the music. Like a HD stereo system. There probably is a way but I couldn’t find a cheap way. But I did have a spare speaker system for a computer and I did have the Zen. So now she has a device she can use, a device that has good screen contrast and with controls that aren’t too bad for her and a device that can go anywhere she does such as hospital appointments. She’s happy.

And I have an excuse for another gadget :)

Read a good post yesterday at Mosceala concerning banks and credit card fraud. Damn useful information. The sort of thing to be copied and kept just in case. Given our history with financial institutions I mentied the post to J and said she should read and keep a copy. I described – we were out at the time – the contents of the post. She then starts telling me about a call she got yesterday.
Some goon from the Natwest bank had called to talk to her about ID Theft. J asked him how she knew he was who he said he was. His reply? “We have a website”. They have clever staff at Natwest then …..

Anyway, he starts asking and telling her about ID Theft. He starts quizzing her. He even said that if someone stole her ID that she would be liable for every single thing that person did including all debts. I have not the slightest doubt that the Natwest employee was lying, he knew he was lying and that his bosses knew he was lying – because he was actually trying to sell a £60 ID Theft Insurance Policy. (When J had the car accident which ultimately caused her to stop working which lead to financial disaster, every single financial institution said that as the Multiple Sclerosis was a pre-existing condition that it was not covered therefore no money. This was even policies that had been taken out over 10 years before diagnosis. So I am completely confident that should we have bought this new insurance policy and should we have claimed then the bank would have said “As your ID was a pre-existing condition….”).

Back to the goon. He is trying to spook her by continuing to lie. Why do sales people have this need to lie and lie and lie? And they expect people to be honest when they apply for jobs? He is telling her about the things people can do and how she would not find out. J starts to tell him where to find information (and it’s not just Experian) and how to keep track of who knows what and from where. She starts to educate him. He starts on about letters – she tells him that we routinely shred all docs and even CD’s that have info which should go no further. He lost. Totally.
This goon was given a script, sat in front of a telephone and told to scare the crap out of people to sell them a policy that has zero benefit to anyone. Now isn’t the Natwest bank a bunch of even greater lying cheating thieves?

Side note: J’s phone rang when she wasn’t close so I answered it.
“Hi, I am from Orange calling about our service to you”
“Whatever it is I am not buying so you are wasting your time”
“I am not selling sir, I wish to arrange for you to have a new handset”!
“Cool – I didn’t think Orange cared about Pay As You Go customers”
………. click.

And remember – if the Double Glazing people call, just tell them that they need to ask the Landlord. They’ll go instantly :)

One can only hope that the lying, cheating and greedy Catherine Orridge, Sean Castle, Robert Trossel and others equally of such low moral and ethical standards are caught out in the defrauding of people who really will clutch at even the most imaginary of straws. This nasty deceiving of people is worthy of the deepest contempt. It’s a con from start to finish and they all know it.

Stem cells, multiple sclerosis and thieves.