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The Andrew Lloyd Webber Test

I've decided this phrase needs to enter common usage.

Clearly when one is asked "what is your favourite Andrew Lloyd Webber work?" they are likely not asking which of his musicals you prefer.

Even if they were, this gives rise to the issue of answering with a musical not by him - I'm just not that good at remembering composers!

The answer is of course Variations.

Researching car adaptations

I've put a bit of time into this. When I got a car I decided not to get hand controls, I knew for sure my left hip wasn't going to let me use a clutch, so an automatic seemed like a good compromise. I had a strong suspicion that there would be times when this was a problem, either right hip or pelvic problems could make switching between pedals and potentially using them at all hard.

It seems I was right, having a car has been life altering for me, to not be able to drive even temporarily would reverse some of that.

Sadly it seems technology hasn't really hit the small market that is adapting a vehicle, the standard hand controls as based on a seventies design, that's older than me!

They also fit quite a narrow model of disability, the fully able upper body with non functional lower body.

The website helpfully provides a chart for you to click your disability and find solutions, http://www.alfredbekker.co.uk/buying-guides/disabled-driver-options/, problem is it's just red limbs for non working limbs and it only covers one or two limbs, not three, or even four.

Click on one of these and it doesn't then give you the option to say but I can't do this with this hand etc. it gives you a list of possible solutions and I didn't find any possibilities, yet I did via the list on their website.

I'm currently leaning towards a break only hand control as it seems to be switching between pedals that is the problem - though I'm not sure the angle for pushing it is good, so further investigations may need to occur. Possibly even paying for an assessment at a place in Thetford that doesn't actually sell stuff.

Reading my blog makes me tired

There were many feelings when I read back through my old entries and many of those were expected, so in some senses they aren't interesting. The unexpected ones are interesting to anyone but me, but are useful when it comes to filling in forms.

If you've ever had the misfortune to fill in forms for DLA (and probably some other things to), you'll find it's all about what you can't do not what you can do and that is actually quite depressing. Last time I found one of thing things I could't do was fill in the forms - I can't actually remember why, there are so many things that can go wrong to affect that, so I got my mum to do it. Fortunately these days I don't live with my parents and (touch wood) my writing ability is mostly present.

What I really noticed was that I did things - and if I did think I was too tired to cook, I didn't bat an eyelid going out for dinner, these days if I'm too tired to cook, I'm too tired to go out to eat, the back up plan is not eating.

I explored, I did new things, I browsed shops. These days shopping is never walking up and down all the possible aisles it's hitting the locations where I know there is something I need and if I can't find something, tough, it doesn't get bought. That said I do feel lucky that at the moment I can go to a big supermarket, park as close as possible and manage to walk around it a bit, there have been times when I couldn't do that and believe me, mobility scooters in supermarkets are a real pain in the butt, it's as if you are invisible.

following up on 7th June 2007

Wow, is it really that long ago!

I ummed and arred way too much, but in the end I did go for the surgery and it wasn't with the guy I described in that post, it may or may not have been the other person I mentioned. My recollection is that a physio told me that I should call the doctor to get the name of who they would recommend for a second opinion and that they gave me a name I hadn't come across before over in Seattle. I saw that guy sometime in June 2007 and he had familiarity with EDS and had treated patients with it.

It was a revelation seeing him, he had a totally different opinion about what was going on, that you don't get labral tears without there being boney issues - when pointed out even I could see the difference between my two hips on x-ray and was perturbed that no other doctor or radiologist had pointed this out.

I stalled somewhat cancelled surgery a couple of times, but eventually went under the knife in November 2007. I'm glad I did. Unfortunately his assessment from before surgery that he could get me back to normal turned out to be wrong, it seems that my body doesn't give up much information on MRI and everything was way worse than the images. He did his work and I trusted him. Recovery was a long haul, but he got my functionally a lot better, sadly not improving my pain that much.

To complete the story I need to add in the events of 2010. In late June I bought an item of flat packed furniture from Ikea, a couple of days later I built it - it seems likely that this was they day I reinjured my hip, by evening I was in agony, ended up in the ER because I couldn't feel my foot. It took a while for all this to get sorted, my previous surgeon was on holiday, I tried to get the various tests done before he got back so I could go in with all he needed. Turns out the tests showed sod all. I really wanted him to operate there and then as I was confident of a labral tear. He insisted on waiting 4 months from the date of injury. He also explained that he thought there was extra bone that needed removing but that he could only safely remove a small amount at a time hence not risking it last time.

So on 19th October 2010 at the age of 31 I was rolled into theatre for hip surgery number 2. Recovery was so much harder the second time, fortunately my insurance was great and I got two months of physio and occupational therapy at home. Then many more months of outpatient physio.

Somewhere in this process I learnt that my right hip had the same underlying problem as my left hip, hip impingement, the strain of leaning a lot on that hip meant that it got very inflamed and angry. There were times when using a cane to walk I didn't know which hip to take the pressure off. Fortunately back in the UK an over keen doctor decided I should have an arthrogram on my right hip to confirm no labral tear, even though I knew that already - the amount of fluid they push into the hip to do that test gave the joint time to rest and calm down.

These days I seem to have found a combination of pain management, limited activity and careful sitting that means pain doesn't dominate my life. Though to some extent it controls it - I can choose to do something one day that I know will cause pain, but I can never do that two days in a row and my "something that will cause pain" activities aren't exactly the most exciting in the world. Though going to the olympics was achieved with the help of mobility scooters provided when you get there. Rough ground and slopes are something that isn't going to happen, even the gravel outside church is a problem. I can live with that, but I struggle with the resentment others sometimes appear to feel, when my presence restricts their activities.

Maybe I'll try blogging again

I'm not clear on why I stopped blogging at livejournal and moved elsewhere. I know exactly why I stopped blogging there and I'm not going to go into it.

Long story short, I'm back living in Cambridge (a good thing), I've found a church, not finding it entirely straightforward, but am enjoying serving on the sound desk and hoping to start teaching in sunday club soon. I'm working part time on a trial basis, hoping that they will want to keep me, but not confident I can stay and not put my health on a downwards spiral.

I have a car, this is a very good thing, when your mobility is as poor as mine this is a lifeline. Sadly the government are trying to change the boundaries as to what level of mobility qualifies you to the level of benefit that allows you to access a car through motability - I really need to write to my MP about this.

Whilst I wouldn't say my mental health has been poor (since recovering from postnatal depression), it's been noticeable how much better I am in this sense since having a car has got me out of the house independently and connecting with people. It's not a matter of feeling happy or sad, but a matter of feeling that I can do things, that I do have value and worth.

I hope to be back, I have things to say!

New blog

It's an awful long time since I posted....

....for a while I wasn't blogging at all, but I have now started a new blog, it's at http://mumprime.blogspot.com - if you pay a visit, you'll find out some exciting news.

(Corrected an error in the web address)

the hip!

I left my doctors appointment confused and emotional, he said several things that contradicted my prior research, now, I realise that the internet is not goepel and one statement of something can be taken as fact and propagate through to other sites, but specifically he said the acetabular labrum is not related to hip stability, but I'm finding statements such as "fundamentally linked to stability" in the abstracts or research papers, though as yet, I haven't actually found any research related to testing that, though I'm not sure how you would as you couldn't go around removing peoples labrums right left and centre!

The other main thing was he brushed away my concerns about slow recovery and post operative discomfort, this isn't really an evidence thing, he said he'd never admitted someone following hip arthroscopy, I'd actually have been happier if he said he admitted less than 1%, admitting none to me either means he's done very few cases, which isn't true, or he's turning a blind eye to comfort and healing. After my laparoscopy (which commonly is done as an outpatient procedure), I was still on oxygen at the time they might have sent me home if it had been intended as a day case and 12hrs after, I'd not have made it to the toilet had I been at home. I've also found something in my book about hypermobility that says "will recover more quickly after a major operation if they remain in hospital a little longer than usual", I don't think this counts as major, but the logic likely still applies, though the author of this is a "mere" physiotherapist.

Then there is the fact he wants to remove not repair, he says repairs don't work and blamed it on the blood supply and the different types of tissue, but I can find no reference this in any medical research, with many papers giving good results for repairs, without any differentiation of location (within the labrum). The other thing is once it's gone, it's gone, if he removes it and my hip becomes unstable, it's too late, if a repair fails, you can always remove it!

I feel stuck now, I accept his recommendation for surgery, but several things don't tie together, the reasoning behind leaving it untreated likely to cause arthritis sooner rather than later, would also seem to mean the converse about what he said about other things, but I'm really not happy about him doing the surgery, the problem is, he is the local expert, some would say national, I have tracked down another person locally, but he's clearly less experienced and though he does hip arthroscopy it's possibly he may not do labral tear stuff, it only accounts for 10% of hip arthroscopies apparently.

laptop kaput

I should have heeded the warnings, for several months the power supply on my laptop had been causing issues, getting to the point where I couldn't use it and be plugged in at the same time and plugging it in was a matter of fine balancing everything into a position that it actually charged. I didn't want to open it up myself, nor did I want to hand it over to Andrew, fearful that he might break it, working badly is better than not working at all.

This evening it broke completely, I pushed the plug in and the socket vanished, so it was go in, or nothing, it's one of those tasks that requires complete deconstruction taking up to an hour and hence despite a probable simple fix at the end likely to be quite costly and verging on not worth it.

Laptops are complex to deconstruct, finding a manual definitely helps, but we couldn't find one, so I started unscrewing screws, when I got stuck, I started to look for similar Toshiba laptops, not knowing the numbers of these it was potentially a needle in haystack situation, but the first set of pictures I found proved sufficient and the total time was less than an hour with two brains and one set of hands! It looks like it will repair, but it needs fine work with a soldering iron and the tip of ours may not be fine enough, so Andrew has gone to Radio Shack to see if he can get another.

The sleep test today was not fun, but not unpleasant either, though by the end, I was headachy. According to the machines I fell asleep more than once, but I didn't think I had, which is both bizarre and a little worrying, I've only ever been aware of that happening shortly before actually falling asleep for the night. So maybe it will turn up some helpful information.

We're seeing the hip surgeon tomorrow which is a bit nerve wracking, it's entirely possible he won't recommend surgery, but given we've tried everything with physio, it's unlikely he'll have great alternatives either, so though I'm anxious about surgery, I'd rather he recommend it than not, as not means put up with it, which isn't great either and rather depressing in the long run.

MSLT tomorrow

= Multiple Sleep Latency Test, the idea is to test how much daytime sleepiness is a problem, versus daytime fatigue, I pretty much know the answer, even when desparately tired and wanting a nap, I don't fall asleep in the afternoon (I used to, but not these days). It's frustrating as this test takes all day, and I don't feel like it's going to be all that helpful, even if it does tell the doctor something, I'm not sure he'll be able to do anything, we've already identified some issues with the overnight sleep study I did, it's possible they are caused by medication, but not taking that medication is not really an option and I don't react very well to the group of medicines that can treat the problem. The long and short of it is tomorrow will be a boring day attached to lots of wires!

It's dancing tonight and it will be our first session on the tango, which could be interesting, fortuately they always walk through all the steps, so I will just have to concentrate very hard! My hip is feeling pretty sore right now, but I think it will be ok, the tango has less rotation than the vienesse waltz and there won't be as much actual dancing in the first class compared to later in the month.

the house

I had a bit of a blitz, cleaning the house today, downstairs looks an awful lot better, but doing it make me realise, just how much more organising there is to be done. In our old house, I felt that mostly things were in the right place, even if that place was messy, the furniture was laid out in a reasonable way and things were stored where they were used etc. Here, I realise we are a long way from that, part of that is the fact, we now have a house with an awful lot more storage space than previously, so there is much more decision making about where things go. Then, you slip into doing certain activities where the stuff is, even if that doesn't make much sense and it takes concious effort to think through how things are best arranged. I can't even decide where to start, our bedroom is big, so has absorbed a lot of stuff that wouldn't typically be in the bedroom, so having that organised would be a big step in the right direction, on the other hand, the kitchen/dining room/living area, is where we spend most time, so it makes sense to start there too! Just right now I don't even see how I can make a plan to work on, it seems overwhelming!