Orthotics day 1

So I've had the orthotics for just over a day now and I've worn them for approximately 8 hours, including four hours in work.

Aside from the fact that my shoes are all too small, they are comfortable and I am learning how to do stairs with them. My colleagues, again, have been amazing and supportive.

I'm not sure if my work shoes are too tight but the heel foam has already flaked off. I rang the department and I'm due back on Friday. I think they said they sell shoes too, so I might enquire about that.

New legs

What's this, two posts in one week? And on consecutive days no less. It must be bizarro world.

Anyway, the long wait for new legs is over. I dutifully got to my appointment this morning and got fitted with these babies.

They even have an ankle joint, but on the down side they limit my ability to crouch and kneel. From the back they look like some medieval style armour.

I'm to wear them an hour a day and gradually increase the duration, so immediately I wore them for two hours, after which everything below my knee hurt. They are snug. Getting into shoes is the next challenge, and I see shoe shopping in my future.

There'll be a review, and I'll try to update regularly.

For now, have a good one.

Physio update.

So today was my last day of intense one on one physio. There'll be more, but from now on its gym sessions then a review in a month (for anyone paying attention, tomorrow is my orthotics fitting so the review in a month thing lets the physio see how well I'm doing while having my legs corrected), and then I will be told to join a gym and spread my own little wings and take some responsibility for my own   work outs.

What matters from today's session is the physio retest. I scored 50/56 on "admission", proving I'm not as contractured or disabled as others, and today I scored 56/56. Two months of weekly visits has already made a significant change. Hopefully with more work and the orthotics, things will continue to improve. 

In other news, I rang my local MP to find out more about their stance on the subtle cuts not only in disability support but also in work schemes for the disabled. I've blogged before about not doing unsupported posts, and I plan on reading up about cuts before I go on a gut busying tirade, but if what little I have read is true, then it's deeply worrying. 

Fortunately, my managers  manager told me recently she felt that I was doing "really well" after three months in my new post and my manager by proxy (my own manager got one of those holiday things I hear so much about) told me I was doing "well". I feel I'm doing fair to middling (which I think is a nonsense phrase meaning "it's ok but I'm being modest") but I would rather under estimate myself than get over confident. My own managers recent preformce review of me is so good that I feel it's not a review at all but inspiration to do better again this year. I've said as much and he laughed, which is code for he's caught.

So orthotics tomorrow, in the mean time, enjoy this gem:

The cost.

Mobile upload time again!

A friend posted on Facebook recently about having to do a test for a learning disability for university exam. So far, so reasonable. Tests allow for measuring support, what adjustments are required and the quantifying of the "severity" of the disability.

The kicker?

They are being asked to pay  £100 for the test.

Paying is nothing new. I'm sure my parents forked out a small fortune to get me tested and reviewed. In university, I'm sure if I'd actually engaged with the disability support service, it would have cost me money (I know, cos I read it in the leaflet). As it so happens, after my teen years, and years of schooling in which I was "labeled" disabled, I decided I wasn't going to engage with disability services. Hindsight is a wonderful thing, and this time around I am engaging and it's fantastic.

But I digest.

After losing my job in London, I had a scheduled test with an educational psychologist. (Better late than never). It cost me £600. A friend gifted it to me.

Given the following events in my life, best £600 I ever spent. It gave me an answer to managers in London, it gave me a road map for the following years and made for an easier life.

But still, it's locked behind a pay wall. I'm assured there are grants and charities that can help but if money is an issue, then gaining support can be hard.

My CP is a medical condition and therefore was covered by the Nhs. Even my orthotics are on the Nhs. (Made locally, so I'm supporting local business.)

Money does make the world turn. Modern gaming involves pay walls. Health care should not be locked behind a pay wall, but sorry, as the new corporate St John Ambulance prove, there's money to be made.

GP neuro follow up

Hurrah I'm trying mobile blogging again, mainly cos I've just had fasting bloods and am now out having a double donut burger to compensate.

So I started this morning with early physio. I collapsed last week during physio so they took no chances with me fasting for bloods and did bed exercises. I'd love that to be as relaxed as it sounds but good Lord can physio manage to cause pain while doing the most mundane tasks, like walking. And when I say walking, I mean the most stretch I could achieve by lying down and digging my heel into Sarah's gut and then mimicing the walking motion.

To prove I'm not even a little symetrical, my left leg pulls my gluteus muscle while my right pulls my calf instead. My thigh muscles are cramped and locked, pulling everything off centre. I really feel for people who are more contractured and stiff than I, because I cannot imagine how painful the physio work is for them.

So I have four more one to one sessions before I start in gym sessions and I need to buy a Medicine ball (? Those gym ball things) that can apparently be bought from your friendly cheap store, as long one doesn't put it under too much strain (unless I want hilarity and explosions to ensue).

So following that I had a practice nurse appointment with my GP. This year my GP picked nuero disorders as their subject of focus, and I fall, for once, neatly into that category. Stacey is my practice nurse and she's a damn good one, having steered me through asthma follow ups and looking at my toe nail that's doing something not in accordance with the manual with ease and good humour. 

I arrived early cos "it's fasting bloods o'clock and I'm hungry!" (I never claimed to be a good patient). Stacey got me in her office and for a solid thirty minutes asked about my progress with physio (it flipping hurts is apparently not an appropriate assessment of it) and my general day to day health. She asked about work, and then asked if anyone commented. I said a couple of clients had but they had previous experience with CP and where very supportive. My colleagues don't treat me differently, and Stacey asked if they accepted me.

I think the most important thing about work is that they accept me. Many have experience with CP, and for me, it's not that I'm achieving in work, the mile stones I meet, the compliments I get (at least one a month), the responsibility I'm trusted with, the resourcefulness I can access, it's the fact that my colleagues don't see me as the autistic cripple, but as a team member and leader. I base my decision to stay in the job much more on managerial support and colleague acceptance than I do on advancement opportunities and salary increases. 

Stacey then asked about steady relationships and how it was with my partner and was it all love etc etc. thankfully she cut to the chase with the words "I'm asking about babies". I should have told her I was flattered but she's a married woman, but I think my wit deserted me with shock. Babies are not something I focus on, although aren't they all cute when they are someone else and asleep and/or being adorable. I explained to Stacey that I don't really consider children in my future due to the bottleneck of various interesting disabilities I seem to be, and that any procreation would have to be done with the knowledge that I could be burdening a child with all of my problems (although if it was just me left to repopulate the planet I guess I'd have to step up to the challenge, and then we can enjoy a second Stone Age as my kids lack the imagination to make fire).

Stacey explained that I could see a geneticist before choosing to make that irreversible lifestyle choice, and while I'm sorely tempted to go see a geneticist to ask about genesplicing (come on dino-pocalypse), I think I'll avoid babies for the time being.

Finally we discussed the upcoming robotics fitting for my legs and I have promised to keep her posted. I did note that in the orthotics department literature there's a line about no nurses working in the department which I think is code for "if you need any assistance with mobility or continence, please bring your own", and I shall ask if this is true during my fitting. 

The doctor came to hit me with the reflex hammer, stating I had brisk reflexes, and he wisely avoided my feet, knowing that my reflex there at least is rather pronounced and has taken more that one eye out in the past. 

Blood results in a couple of days (come on no diabetes) and follow up for asthma in six months, all in all a good gp visit.

Also discussed having a robotics tattoo done on my legs to reflect the weird machinery inside that's clearly causing all these issues..... In the meantime, goodnight, whatever you are. 

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