Social Care

There was an interesting report today on the news about the lack of social care in the UK. In particular it fails the elderly over and over and over again. No government has ever put money into this, which IMHO is not only grossly negligent, and fails on the duty of care test, but also fails to for see the elderly population rising in the future but still, there will be no adequate care in place. So its OK to find the money to bail out the banks and the car industry and probably some others will come knocking, but provide a decent standard or care for people, Oh no we don't have the money for that do we?
Read the article in today's TimesOnline

http://www.timesonline.co.uk/tol/news/uk/article5598415.ece

I have a care package, and although I like to think of it more in terms of assistance, its still care. We have someone come everyday and they get me up and the boys and help my husband because as I pointed out to my OT, a wonderful man he may be, but Superman he isn't quite yet, and I think the chances of him getting me, himself and 3 little ones ready for 8.30 day in, day out isn't going to happen. Once I'm up its OK, but I will raise my hand and admit I'm not exactly the speediest in the morning at the best of times. But wind me up, get me going and that's about all the help I really need, and bedtimes are pretty slow affairs in any case.

I'm lucky in so much as Northumberland has its social services linked to its NHS services so there seems to be joined up thinking and financially better use of the funding in general. It means there aren't about half a dozen little NHS trusts all after cash, just one big one, so they also have better buying power. It's also easier for my OT for instance, to speak to Wheelchair Services or sort out care, or help us fund a ramp etc. I may be deluded but surely it must be better and easier if everyone is in the loop when it comes to stuff like this rather than everyone holding onto their own piece of the pie? If I'm right, why is it so different in other parts of the country then, or perhaps Im just deluded?

Do you Twitter?

Or for that matter Facebook or MySpace? Well it wasn't so long ago that I'd have laughed at anyone who might have suggested that Id be found lurking around these sites, but I put my hand up and say yes I am a Facebook addict. Although I can also be found on MySpace and Twitter, Facebook is my favourite, I never really got into Bebo. Social networking, I love it! Anyway am I so shallow as to have 600 'friends' Ive never heard of? Well actually no, I'm pretty proud of my friend count but they are all really friends, family or people I know one way or another. As we have people scattered all over the world, yes I do find it a handy way to keep up with everyone without having to do individual letters, cards or emails, and actually I like the way I can give a little snapshot of my day. Am I superficial, er well I don't think so, but you know what I'm desperate to get 100 friends...! So go on, don't think too hard, make me your friend, you know you want to!

You've got to laugh havent you?

Given the circumstances, I find I end up laughing at absurd situations far more than I end up crying. Today I was in Hexham, and being Friday it was snooker and tea day. Id arrived in the car park at the same time as a friend as for once, I was on time. Now he is a tetra/quadriplegic since June 1966, and relates this with bitter relish and some humour as he recalls England winning the World Cup and he being a Glaswegian! Unfortunately as we rolled along he dropped his car keys and bag, so we both stopped and went to pick them up. I can tell you this isn't an easy task, for about a minute we rolled around the keys as if we were dancing around our handbags, during which time I was slowly, slowly, slowly, getting lower and lower to try and retrieve the keys. This has been quite a painful manoeuvre for me since my pregnancies and its just as difficult for him, for other reasons. After my initial failure I just thought 'this is so absurd', and burst into fits of giggles, he started laughing as well and for a couple of minutes we both sat laughing in the car park at this mad situation. OK maybe you had to be there to appreciate it, but I can say that my soul is healed by such laughter, the shared joke of a shared situation with a friend who understands why its so very funny.

A little bit of Surgery goes a long way

So in the last 3 weeks Ive had 3 hospital appointments plus one for the baby. Every time I go, I sit and think how I really could be somewhere else, doing something much more productive with the time, but I also know that I do, in a grudging sort of way, realise I need to be there whether I like it or not. So Ive been having some urodynamics done, which if you want to look back on some of my earlier postings will see what its all about. Needless to say, without giving too much away nothing works as it should anymore which remains the bane of my life. So I have a new urologist who is a man.... now I don't mind male medics in the slightest, and have absolutely no shame whatsoever, but I had a good working relationship with the previous lady so I'm having to now re establish things with this one. But he seems pretty nice so there are no complaints. Anyway as I've waffled on and on without saying anything much, I have to admit to having to have bladder surgery, which is tentatively booked for May. While its not a major major op, its going to be enough to lay me up for a week as these sort of things are always unpleasant I guess. As you can imagine I'm not overly thrilled at the thought, but ho hum, I'm taking it well, I suppose. Mind you ask me in May and I wont be so calm will I?

Put your hand up if you are from Michigan

For some reason I have an extraordinarly high readership from people in Michigan. Strange, is it a coincidence or are other forces at work? What is it with all these towns that read KBO? Maybe it's one person just pottering around the state logging on in every public library. Or maybe not.............

So make yourself known, you Wolverines, I know you are out there, somewhere....................................Ann Arbor, Bay City, East Lansing, Ortonville, Holland, Southfield, Bloomfield Hills, Flint, etc etc

Weather the weather

I have turned into a weather wuss. Its no good I have to admit it, if it rains I stay in. It sounds utterly pathetic I know, especially as I used to be the type of person who positively revelled in 'weather'. Now I peer through the windows and if its looking threatening or heaven forbid is windy I think once, think twice and then maybe 3 times about it before getting out and about. Now the reason for this is actually deadly serious, because in a wheelchair you get wet, wet, wet. So no sprinting out the car and heading into a shop to dry, no, there's the labourius getting out the car which I suppose may take about 3 minutes, by which time your cushion is very wet, so you end up with a wet arse, your chair is generally wet, you get wet thighs and so on. I was thinking that the reason must be because you have a greater body area directly in contact with the rain. My push rims, while looking nice slip and slide, and today I broke my nail which hurts and the rims are cold. Now the options are few.

1. Stay in and never go out especially in winter.
2. Wear lots of specially designed wheelchair wet weather clothing that looks totally ludicrous, so much so I might as well have a siren and flashing light.
3. Get wet.

Since I do quite like going out, but at the same time eschew the looking ridiculous option where possible, my only option is number 3. So I do. Frequently. Its a bugger!

Medical Catch Up 1

For about the last 6, 7, 8 months Ive had quite a few hand problems, most of all a lack of grip, tingly fingers, and sweating profusely. It ranges from a decimation of crockery, to being unable to open bottles, to at its worse, cant hold a bloody fork. It varies from being OK, to not too bad, to miserable. So I mentioned this to my Neuro consultant last year and he immediately said he thought it sounded like a syrinx or to be totally technical, syringomyelia. At that point he was all for doing an MRI and a lumbar puncture when I said oh by the way I'm pregnant which in medic speak really means, don't touch me with a barge pole, because they wont unless you are truly at deaths door. So he jumped a mile, back tracked and then decided that as long as things don't get any worse to wait until after the pregnancy and then have a look. Which is where we are now, and I have an appt in a couple of weeks for said investigations, which fills me with excitement....not. So what is a syrinx you might wonder? Well essentially its a swelling or cyst in your spinal cord. It can be removed through surgery or left, and can or cant leave permanent damage, but of a guessing game so it seems. It can be drained but is quite likely to return so I'm told. At the moment I'm not too bad and haven't smashed anything major for some weeks even though my fine motor skills are poorer than they were, you do get used to it and of course I await the result with baited breath!

You can tell we are well and truly over the festive season as last week kicked off with an appointment with wheelchair services. A chair is not just any old chair, oh no its an extension of everything you are, a bit like your car. If its not right then you are not right. So now Im no longer pregnant I needed a bit of adjusting. The thing with your wheels is that the further forward they are the less effort you have to use but the downside is that you are less stable and more likely to tip over. Most of the time I have mine set just at the tipping over point, which means I do tend to fly over sometimes just out of the blue. Previously I have altered this myself but my new Kuschall chair is a bit different as you have to move the seat not the wheels, so Im glad to say that a technician came and did it for me. Just an inch mind, and we shall see how it goes, easy does it, is probably the best thing.

Butterflies

People think that once you've been disabled for a while you get used to it. Well, only sort of. To be honest I find it gets worse as time progresses. Initially I was super-dooper positive, looking- on-the-ever-so-bright-side-of-life, and being the all singing, all dancing, superwoman that everyone knows and loves. And then I came down with a big fat splat!! Since that time Ive pottered along in life, found my way a bit more, and generally I'm still all those things but now I have children the dynamics have changed quite a lot. My boys are little but I'm a lot more aware of being an embarrassing parent maybe. I'm conscious of how hard access is to everywhere with children, how this year I couldn't have got into the church when my son had his carol concert, and so on. I wonder what teachers and parents think? I'm just reminded all the time. Should I say something? Oh dont worry about me, I have a bit of a bad back after falling down the stairs/being run over by a speeding car/being attacked in the street/ falling 10 storys/deep sea diving tragedy/ballooning accident/ medical mishap etc, etc, etc. I'm super self conscious amongst the other parents. This sounds amazing to anyone who knows me as I give the impression of being 'person most likely to.......' Only I'm not. It took me ages to pluck up courage to actually go to the school door to collect my son, and now we have his first birthday party this w/e and again I'm feeling super self conscious, like I have a big boil on my nose. Oh almost forget its actually a wheelchair......!

Like everything I know in my heart it will pass, it will work out and before I know it we will be home. But faced with young children, parents I dont really know and lots of new situations, I find more and more I'm having that awkward deep down in the pit of your tummy feeling, that I haven't quite mastered yet.

'How the brave new world arrives'

Well Happy New Year, here we are arrived in 2009! I tend to think, 'Well Ive made it to another year.' My resolutions this year are many. Normally Im not the resolving type but the last year has been hard, and it seems like a good chance to draw a line in the sand. So this year I want to, in no particular order.........

• Be a nicer, kinder person ( I say this every year)
• Apply for some jobs and maybe go back to work
• Resume the OU degree I put on hold because of babies
• Not to have a baby this year
• To catch up with friends Ive neglected over the last 6-12 months
• To paint the bathroom on my own
• To pay off my credit card
• To be a more confident person
• To learn an interesting new skill
• To finish off the family history

Christmas Past

Blinkin 'Eck, Christmas has been and gone and I need a holiday to get over the holidays!

To give a quick summary of the last 2 weeks it goes like this....

Went to visit my mum for 48 hours and then ran round visiting as many people as possible in the shortest space of time, fell out with my brother somewhat and filled the car with presents. Got home, I went to the doctors on the 23rd for a routine appt. On Christmas Eve celebrated eldest sons 5th birthday. Also took him and his dad to the doctor as they were both ill. My husband was actually suffering big time and on this occasion it was genuine not just a man cold. Both came back clutching antibiotics. On Christmas day everyone stayed in bed until 10am, then we got up, feebly opened presents, had hot drinks and did B-All. No Christmas lunch for us, I think it was scrambled eggs or something... we are Jewish after all!! Husband too ill, kids don't care and I don't eat meat anyway! Same for Boxing day and the next couple of days. Monday took middle son to Doctors as he has had a cold since he was born, came home with inhaler as he may have asthma. Tuesday we all dragged round Tesco getting food in as we'd eaten everything Id bought the week before at midnight! Mad or desperate? New years Eve my son and husband went to the cinema but ended up going to the local play centre as Id made a mistake with the film times. We then had a cup of tea to see in the new year. I have a dreadful cough and so does the baby. I'm sick of the bloody cold and need a haircut. Bah humbug to the festive season and only another 357 days to go or something like that!