100 Days...

100 days - has a catchy ring doesn't it? On my 100th day I put my right foot down on the ground, with its moon boot, and with my crutches, I 'walked'. (I am not putting much weight through it yet). I also, for the first time, started hard core weights work with my right ankle. Sitting on the machine with my feet up pushing hard with the smallest weight. Left leg and foot acts as brake. Right foot and ankle forcibly on the move. My Physio says its time to 'challenge my joints'. I was under the impression that there had already been 100 days of challenge. No so. Now its for real.

My set of exercises are now long and hard. We are trying to strengthen my knee and quads. Without the joint movement and without the strengthening there will be no walking. Even my gait has to be reconstructed. Now its a right toe point, pulling the knee hard in, easing my foot back and then the final knee bend (ever thought about how to walk??) 'No pain no gain' said the ambulance driver... Mmm

On the eve of my 100th day I took my moon boot off for the first time overnight. My strange little leg exposed to only a duvet for 8 hours. It felt very light - and indeed it is. My calf muscle, what little there is, hangs sullenly. My graft looks bigger now that my leg has regained more of a shape - particularly round the ankle. With most of the swelling gone I now understand why my graft needs cosmetic surgery. Its not a thing to flash in front of small children... Or adults for that matter.

Despite all this progress I'm not in good form. This is normal apparently - but deeply unpleasant. I am cross and permanently weepy. Despite the enormous amounts of goodwill from my pals and the NHS there are still things that conspire against my disability. At the Filmhouse this afternoon I have an argument with the manager. I am not allowed a stool to put my foot on because of health and safety regulations. And if I am given one this time, (it is eventually grudgingly offered for a one off) it may set a dangerous precedent. I am close to tears with this public humiliation. I argue. People are allowed to take their shopping bags in. If I had my wheelchair I would have the leg extension. And the extension is far more hazardous than a stool (although if Health and Safety ever work this out there'll be no more trips out for anyone using one).

I stomp off on my crutches, find the wheelchair space, sit on a seat beside it and put my leg up on the seat in front. There doesn't seem to be a regulation preventing this. Its not ideal but it does the trick. There are around 20 people in Cinema One (seats hundreds) - not one of whom would be obstructed in the event of a fire. I and the Filmhouse are finished. I have sympathy for people obeying rules - but there must be ways of providing some sort of leg support which is legal. When you don't get out much because your mobility is limited the last thing you need is zealotry preventing your entertainment. This simply creates more misery - and thus slows healing.

100 days. Strangers regularly approach me and ask me how much longer before I am walking around freely. I have no idea. I can't even get to the bus stop yet - so I guess it will be a while.

Grim times

Progress should be good, right? But it doesn't always seem so. Strangely, some of my milestones seem to accentuate my (temporary) disabilities rather than diminish them. They make me weep rather than smile. I'm 98 days on and yesterday I managed, with my crutches, to get myself to the local Co-op to buy a paper. This trip - in total perhaps 500 metres, used to take me 10 minutes. Yesterday it took around 50. And I was shattered, hot and cross when I got home. There is nowhere to sit down on the way up Bath Street. There is nowhere to sit down in the shop itself. In the queue, no one allowed me to go forward, even though I was clearly edgy. Of course they might have thought it was patronising to offer to help - and I could have asked. Instead of celebrating the success I noted the effort, the time, and the little old ladies passing me on the inside lane...

On my return I met my neighbour's brother - who must be in his 70s at least. He is mobile but slow. He asked me to let him know if I needed anything done in my flat. Very kind - but dreadful in some way. An old man who helps out his older housebound sister in our stair every day offering to help me. Another neighbour offered me her phone number when she met me downstairs - so that I didn't need to struggle to the shop. I must have looked rough. I declined gracefully.

A few days ago I had my first bath since November. Designed to be warm and relaxing it was initially stressful. I took my phone in case I got stuck. But once I was in it was fine. And it struck me that I should have tried a couple of weeks ago. Why didn't I? Its all about confidence - and testing. But once the habits are formed around a physical constraint they are difficult to break. Testing my recovery is a tricky call - there's so much at stake. If I get it wrong I will suffer. Too far from home and I cant make the return trip. Too much stress on my right knee and the pain comes later. Knocking out a pain killer carries the burden of not knowing the impact until its too late.

My body is healing but each day I feel slightly more deranged. And even though I am assured this is normal, its terribly hard to get up each day and take it on.

When your time is up....

On Saturday night we went to the Playhouse Theatre - in the wheelchair of course. Struggled through the smokers on the way in. Smiled wryly at the scantily clad tottering fake tanned women in a Scottish February. Tilted my head up to the ticket man. Ushered through the wheelchair access. Parked up and then protected all those fancy tights from laddering on my steel leg extension...

Vagina Monologues - (http://en.wikipedia.org/wiki/The_Vagina_Monologues) Place should have been packed with feminists - but it seemed that the crowd was more hen party than Germaine Greer... (This may have been something to do with one of the actors having won one of these reality TV star thingies recently - GIE US A SONG - GIE US A SONG!! the hecklers urged...)

Its a cracking piece of theatre. Four woman sitting on stools reciting monologues about vaginas. Funny stories, sad stories, political stories. Genital mutilation, vaginal workshops with mirrors, pet names and orgasms, rape and war, old women and young women and gay women... I'm laughing and crying at the same time. Its a celebration for women - its about empowerment and pleasure. But it also reminds us that across the globe women do not have equal rights or pay, they are mutilated in the name of religion and raped in the name of war. They are beaten by the men who are supposed to love them and abused by employers for having children. And while the actors on stage did their best, strangely with notes (they couldn't learn their lines?) their transitions from pet names to these more difficult stories didn't work - the hen parties and drunken groups tittered with embarrassment and the serious moments were lost.

At half time there was a mass move to the bar. I stayed in my wheelchair - impossible for me to get through. My friend went to buy ice creams (still not drinking - the quarter of a glass of wine the other night resulted in a momentous hangover). A slightly tipsy woman approached me - wanted to know what had happened - why was I in the chair? I outlined the story for the thousandth time. But I was shaky - close to tears. The ex partner stuff was preying on my mind - as was the monologue on genital mutilation (over 12000 women in the UK). My new friend listened and then, to my horror and embarrassment, regaled me with her theories of 'when your time has come - its come' - and 'how many lives did I have left from my starting nine?'. This ghastly one sided conversation continued - I heard about her cousin's son who had died in a car accident (his time had come) and why she didn't wear her seatbelt (her time might come). In a wheelchair you can't escape. And how do you tell someone who is clearly well meaning to piss off? I was saved by the start of the second act - but the damage was done. When would be my time?

The finale of VMs is well known - we reclaim the 'c' word - 1500 women (and about a dozen men) yell CUNT at the top of their voices. How liberating, how wonderful, how joyful to take this unedifying scornful dreadful word only usually uttered by neds and tossers (and famously in Withnail and I to Monty) and shout it to the rooftops - cheering, clapping and smiling. Even being in a sodding wheelchair cant take away the fabulousness of being a woman.... Bring on the vaginas every time....

Put yer coat on dear....

Monday - must be physio. Hanging around waiting for a non emergency ambulance is strangely stressful - can't start anything, nervous about going to the toilet, difficult to relax... They came eventually around 9.15 - knocking on the door having used the service buzzer to get into the stair. Two women this time - one in the fluoro kit, the other in a hefty fleece.

"Where's your coat? Its raining out" the tall one said bossily. Surprised and somewhat submissively I pointed it out. She put it on me. Personally I thought it was too warm for a coat and I would only overheat in the overheated ambulance (I did). But you don't argue with the driver. "Have you got your keys?" "In my bag - you can check if you like.." She did! Rustled through my bag and gave it a good shake. I guess you can't be too careful - you must be sick of breaking into people's houses I muttered with what I hoped to be the correct degree of empathy. Its not that I'm not grateful - I am - very - its just very odd to be treated as if I my brain isn't working properly...

I was accompanied down the stairs. No chance of anything untoward happening. Into the ambulance to find my two fellow travellers. The ambulance had already had one aborted collection - no-one answered the door. Off to the Eye Pavilion to drop off the first man. The other bloke, with diabetes, was a stonemason. I asked him if he was retired. He looked at my strangely (later it turned out he was only two years older than me - I swear it was his beard that caused the confusion - but was I simply falling into the trap that everyone on patient transport is 'old'?)

Gave us a not so potted history of all the buildings he had worked on on the way through Newington. The mad colonel with the waxed moustache who had a library full of first editions but never read: 'books are for homosexuals' he had apparently shouted... The wealthy Jewish businessman with the pig farm... The stonemason had also been knocked off his bike in the past - by a bus. And the driver had given him gip. There's a bit of a pattern evolving here...

My physio session was not as interesting as the trip. A couple of new instructions. Take the moonboot off at rest - and put more weight through my right toes. Back in the ambulance I asked for the heating to be turned down and I took my coat off. We left the stonemason behind - hadn't seen his consultant in time. It wasn't the same without him....

A tragic community

The small step was smaller than I thought. My new senior Physio explained that my joints are not up to the job yet - and if we push them they will become inflamed and painful. So my touch weight bearing will last at least three weeks. It is hard to hide my disappointment.

I have a lot of pain these days too - pain in areas which weren't damaged as well as areas that were. Just putting my toes down seems to trigger pain across the front of my right foot - this is unexpected and frustrating. Despite this I am trying a slightly reduced pain management regime - dropping one of the tablets in the evening (out of a total of 16 over the day). Its tricky - try to reduce the pills but don't compromise the physio. And my responsibility to work it out. I thought I would be walking to my local Scotmid in a couple of weeks... now my housebound predicament is stretching out without end.

Its a strange time. Lots of people ask me if its like being on holiday - all that time to do what I want. But its nothing like being on holiday. My dark thoughts don't go on holiday - they remain. OK - my social life at home has improved - not a day goes by without someone popping in to help with the shopping, cook me dinner, listen to my rants about patient transport. But these visits, although welcome and critically important, have their downsides. I feel need to 'put on a show' of how well everything is going - when actually its all pretty grim. Not just for me - but the other cyclists who haven't been so lucky in their encounters with moving vehicles.

The woman killed at Seafield roundabout. The roundabout is now being redesigned, partly I assume to prevent such a thing happening there again. The young guy who died with a trashed liver in Morningside - comforted on the road by my nursing friend while everyone else stayed in their cars. The man killed up at Causewayside last year. The woman that went under a bus at Crewe Toll in November - alive and doing well - but with more serious injuries than mine Two people killed in Fife at the end of the year. And another accident in Seafield Road this week.

I am now part of a terrible community - at the lucky end of the spectrum - but grieving for us all.... And each time I hear another story my stomach flutters and I think of what might have been..

One small step

Another big day. Being sick is a full time occupation. This is the day that my Spanish friend returns to Spain and I have to look after myself. The day I take my first step. The day I clear 12 weeks of answer phone messages. The day I move my computer to my study instead of languishing on the couch.

The ambulance arrives before I've had breakfast - around 8.30. The driver kindly carries my bag and my breakfast (buttered bread) down the stairs. This time its a van with AMBULANCE written on the side. I sit in the back - no leg room at all. The driver explains that he assesses all the patients on the trip and allocates the front and back seats accordingly. I am uncomfortable within 2 minutes.

We head off to pick up the next patient. He is 89 and blind - went to Edinburgh art college 70 years ago, and attended dances that the city put on for the nurses (they needed more men...). He had been blind for 8 months and had 'got used to it'. But I reckoned he could see a wee bit - especially when we passed his 'old school'...

The next pick up was an oldish woman - very quiet with a gentle smile. We girls sat in the back - men in the front. I was dropped off first - half an hour early for my appointment. For my momentous day I had a new physio - he had started in OPD 5 only three days before. And we were 28 minutes into my 30 minute appointment before I got to walk. 28 minutes of talking and stretching and assessing - would he never get round to it? Finally we were there - moonboot back on and stand up straight - crutches at full attention.

Its called 'touch weight bearing'. Crutches go forward first, then just the toe of my gammy foot, then the good leg last. It was easy. No pain. But very emotional. Here I was starting to walk when 12 weeks ago surgeons were telling me they might have to amputate my leg. And up until now I couldn't even write the A word down - a superstitious fear that things could still go wrong... And perhaps things might - but at least I've got past the superstitious bit....

I asked about the new stair technique. Had a practice on the 'fake' stairs in the gym. And then I'm sent home. Ambulance picks me up first. The other woman hasnt seen her consultant yet. This upsets the whole timetable. Patients coming by ambulance are supposed to be prioritised. We leave without her. I go up the tenement stairs with my new technique - toe touching each stair. Easier on my right hip, harder on my right foot.

So now that I'm almost walking - I can tackle the answerphone messages. And who pops up again but Boris the French couch surfer. Two abusive messages left on 21 November - two days after my accident. Apparently Boris is now training to be a bee keeper and has given up his dreams of humanitarian work - god help the bees...

Fred's big day

Yesterday was Fred's big day. It was also mine. Fred apparently had training from a tabloid editor before his performance. I had no training - and forgot to write down my questions. I was picked up by an ambulance at 12.30 - just before my lunch. I don't know whether Fred was too nervous to eat his. I arrived at ODP 6 at the new RIE before the clinic started. The lights were still off. I imagine Fred arrived early or on time. One isn't late for Select Committee appearance.

I had an x-ray - well 4 - just to get every image. Fred would have gone through security and had his bag checked. After my x-rays I sat alone in the consultant's room to gather my thoughts. Fred would have waited outside his Committee room with his colleagues. Perhaps some final advice? Then my consultant appeared.

He couldn't decide what to do . My ankle and foot bones have healed but there is still a gap in my tibia. I was prodded and poked - and asked to stand up. 'Stand up' - I exclaimed - 'are you mad'. Seemed not. I stood on both feet for the first time in twelve weeks. I was afraid. But nothing untoward happened. After some discussion we agreed on the next steps - start weight bearing immediately with the moonboot on - and wait another 6 weeks to see if the tibia heals itself. It was still hot to touch - and thus healing. Might avoid a further operation yet. Back in reception I made by next appointment for March and asked about my transport. I needed to get home to hear how Fred was getting on. The ambulance turned up eventually - and I was home by 3.45. Missed Fred's big moment - but caught it on the net later on.

Fred said sorry. But I'm not sure he and his fellow bankers understood where it had all gone wrong. Or what they were sorry for. While Fred was saying sorry, Kate from Poland was cleaning my flat. My Spanish friend was having his last coffee in Porty before flying home. Later we had my fabulous neighbours up for dinner and a chum from the Borders stayed the night. I managed to cook much of the meal, issuing instructions from my perching stool to my Spanish friend - whose wise cracks demonstrated advanced understanding of the English language. I think my day was better than Fred's.

Day of judgement

Tomorrow I will see my consultant. He will look at my x-rays and decide whether I need another operation. I don't have a timed appointment. My patient transport will arrive sometime between 12 and 2.30. I'm not sure how I am supposed to have my lunch or take my pills. I'm thinking I may prepare a packed lunch and then eat it at home. Should I sit with my coat on? How will I get my bag downstairs if I have to take my lunch and a drink? When I'm at the clinic I will have no way of getting a hot drink. I have no idea when I will get home. No one tells you these things.

And my generous Spanish friend, who has looked after me for the last ten days, leaves on Wednesday. I will be alone again.

Despite all of this, I'm strangely calm. I have started reading again. I managed to put together an Excel spreadsheet of my various (33 to date) outpatient appointments for a potential compensation claim. I'm taking the wise advice of my psychologist "you trusted the consultant the last time, so this time he is deserving of trust too.." I have a roster of people lined up to visit and eat with me. Tomorrow night we are even having a dinner party with the neighbours and a chum from Dumfries.

I have joined a book group - and ordered the book from Amazon. I might even read it in advance. I do my physio and I think I see a difference in my knee and ankle movements. I can hop further - I am stronger. And I am wondering about work. My life must be about more than work - and now I have the opportunity to make that happen - how strange that it takes a 32 tonne truck to change my perspective (not to mention a global recession...)

Tomorrow it is not only my day of judgment. Fred gets a turn too. Will Sir Fred Goodwin say sorry at Select Committee tomorrow? £20 billion of public money to save a bank. What will Sir Fred say? It was is the system? He was is just one of many? Banking was is about risk? Risk needs rewarded? Whatever Fred says, we are all bankers now - and for better or worse there are an awful lot more of us who understand the intricacies of the UK finance system - this has to be a good thing!

Dogs have rights too (apparently)

Hopping back home on the crutches from the Espy, my local bar, having had a non alcoholic lunch with a pal. A fat chocolate labrador bounds up to us. My friend is afraid of dogs. And while I'm on crutches, I am too. The owners, a couple, call it but don't put in on the lead. They walk past, with no apology. Stupidly I say something to them about keeping it on a lead. Met with astonishing aggression by the man: 'just because you are on crutches doesn't mean that every dog has to be legislated' - wow! Who rattled his cage? I reply along the lines of legislation not being necessary - just that the dog is scary given my current circumstances. He mutters - and walks into the first house on our street. So I know where he lives. Seems like he is one my friendly neighbours. Guess he treats the dog with more respect than the local mobility impaired folk... And after my experience down Portobello High Street today, this is not surprising.

This morning a friend took me to our local library to get some gardening books. Given the distance, we had to take the wheelchair. We soon discovered, as expected, that this wasn't as easy as it seems. In my own street there is no dropped curb. Both I and my friend are nervous of the wheelchair. So I crossed the first road on my crutches, with the intention of joining the wheelchair on the other side. I was then caught by a cross wind blowing straight up the street. Suddenly terrified and leaning into the building (ironically - the neighbours of the friendly dog man). Managed to get across with my friend walking wind side. Then off up the street in the wheelchair. A woman with a child on a scooter met us head on - they move to the side furthest from the road. But we are nervous - ask her to take the other side. She does, without smiling or acknowledging us.

The next crossing has a lowish curb - we tackle it successfully. The third one doesn't. Out of the wheelchair again. This is ridiculous. We make it to the library. Someone has left a bike on the ramp to the entrance. My friend moves it. Finally we are in. Park the wheelchair and onto the crutches - but I cant get through the security barrier into the library - and nobody helps me. I struggle through eventually.

On the way back my only new impediments are meeting friends in the street - we stop to chat - but it is freezing. We flee back down the road, and I'm almost tipped out when what looks like a dropped curb isnt as smooth as expected. My friend is more frightened than myself - I am now resigned to whatever occurs. Off the wheelchair at the end of the road and hop to my door, and then all the way up the stairs. We are both freezing.

My first adventure to the high street has been enlightening. There is no way I could do this on my own - there are not enough dropped curbs - and a minority of the local community cannot be depended on to keep me safe. Without my precious friends and neighbours I would be completely isolated. The moral of this story? Ensure you have your own generous community - nurture it and treat it well. And the pavements? Over to my three local councillors...

Printers and Pickup Sticks

Three and a half weeks after my Occupational Therapist referral (which never happened) my pick up stick arrives - yellow and black with warnings about damage and loss - mustn't be careless! What can I do with this fabulous contraption ? Well, cunningly, I can get clothes in and out of my wardrobe. The wardrobe is walk in - but not hop in - due to the large step. Clean clothes have been tantalising me since I got home...

Meanwhile I have discovered one of the few benefits of being on crutches. Shopping. For non routine purchases I usually spend an unwarranted amount of time and untold agony researching quality, costs, eco considerations, corporate social responsibility and god knows what else. Today I decided I needed a printer. A kind friend drove me to PC World in some hellish shopping centre. I hopped in. Without my wheelchair I cannot be long - as I can't stand up for more than ten minutes or so without my right hip complaining. Asked the nice young man to sell me a printer with cheap replacement cartridges. Eight minutes later we left, printer cost £35 and the recycled paper £6. Real cost to self - almost minimal.

Home to a clean flat and a meal cooked my very generous Spanish guest. Then downstairs to my neighbours to watch a film. My Spanish friend stops off on the second floor to feed another neighbour's cat. Cant beat tenement living. We might have problems keeping the stairs clean, but we have no problems at all looking after each other.

All is not what it seems

Its Wednesday - so it must be a physio day. Up at the crack of dawn. My transport arriving at 9am. Have to be ready on time. Am in the bathroom when my phone rings. Leave it to ring onto the answerphone (a regular occurrence these days). Listen to the message, so astonished, I listen again...

It was the driver - couldn't find a parking place because all the parents were driving their kids the (very short distance) to school - mayhem - and could 'I please get my mother ready' so that 'we could take her down and get her into the ambulance'... My mother! I hopped down the stairs into the sun. Smiled at the driver. 'I am not my mother' I asserted - grinning. The driver was mortified (well, he gave a good show of it at least!). Explained that 'my answer phone message sounded like someone very young'. I'm not convinced. Hopped up the steps into the van - and we headed off. I pondered. Is the working assumption that all mobility impaired folk are old? And if so, what on earth should I do about it? Arriving at the hospital though, I was beginning to look and behave 'like an older infirm person'. I couldn't get down the steps of the van. Had to be lowered down on the ramp - hanging onto the driver with crutches asunder. Not stylish...

On to the physio. The usual pulling and stretching and tugging. My knee is now an 'active 125 degrees'. This is good apparently. I am a compliant patient. I point my toes on command. My appointment with the psychologist was cancelled at short notice. No time to change the transport times. Given a fly cup of tea by the physio and sat down for a long wait. Had forgotten my book because of the answer phone message.

Driver redeems himself by returning an hour early - didn't even have time to flick through the People's Friend that I've been eyeing up for ages. On the return journey I hear that the driver doesn't own a car - and has no aspirations to own one either - brilliant! Tell him about City Car Club. He tells me about the difficulties of finding a public toilet when out and about collecting folk in the van. Was even refused the use of the toilet at a local police station. So much for community policing...

Back at home my cleaner arrives - Kate from Poland. Kate is quiet, efficient and pleasant. I attempt to clean the oven from the safety of my perching stool while she does the rest of the apartment. Then, miracle of miracles, my drugs turn up. Delivered by a fine young man who doesn't stare at my gammy leg which is naked because he turned up in the middle of my physio... Then a phone call from a fellow ex-patient of St Johns. And suddenly I've managed to get through another day.

Settling in

The bureaucracy suffered by the mobility impaired would tempt Kafka out of his grave...

First - transport to my physio appointment. Now that I am living alone I no longer get a lift from my carer. This leaves me three options. First - patient transport. This involves (currently) booking in three weeks ahead. Once you have made the booking, on the appointed day you have to be ready for the bus at least 2 hours before it may arrive because a number of patients are picked up on the way. And of course, we then all have our appointments are are returned home again. On the upside, it is fit for purpose re the vehicle, and its free. The downside is the inordinate amount of time it takes which is tiring, and having to be up early - which is only problematic for me because of my medication. I'm a bit groggy in the mornings.

Second option is Handicabs - a registered charity which provides low cost taxi services for the mobility impaired. However, because resources are limited, the rules of the service limit me to one advance booking at a time to any one location. In essence this means I can only use it once a week to get to the hospital. Again, its fit for purpose and there is no waiting around. In addition it is cheap.

The third option is using a mini cab at the usual rates. I cant' get into a black cab, and cant use a bus yet as the bus stops are too far away. Today I couldn't use Handicabs as I already have a booking for Wednesday, and I couldn't use patient transport because I hadn't booked it in time, not understanding how long I would have to wait. The taxi fare for my 30 minute physio appointment was £20. If I used this option all the time it would cost me £60 a week in fares. On the upside I met Albert on the way out, and Davey on the way back. I didn't have to wait. And we even had a wee adventure in the snow on what was billed as the worst weather for decades.

Then, in the afternoon, three calls from the Occupational Health Team - first there was no record of my pick up stick (last week I was assured the paperwork had been done on the 27th), the second call found it and the third assured me that it will arrive on I Wednesday - along with a shoe horn that I didn't order...

Then organising a cleaner: found a firm on the Internet, visited by the woman (ex Londoner) who runs the franchise in Edinburgh. All sounds wonderful, reasonable prices, cleaners paid £6.50 an hour (well above the minimum wage) - but the cleaners are not insured to clean the oven - too many claims apparently so despite a monthly outlay of £70 I will still have a dirty oven.

Next - how to get drugs when you can't get outside This was surprisingly easy - top marks to my GP and the local pharmacist if it works (will know by tomorrow). First I have a phone appointment with my GP. She rang 3 hours early but I can hardly complain about that. She then faxed my prescription to Mary the pharmacist. Mary then arranged delivery to my door for tomorrow. The potential problem with payment (I have a 4 month pre-paid prescription certificate) solved immediately - just have to show it to the delivery person.

And after all that - I still had time to download a Spanish lesson podcast and procrastinate with Sergio about studying Spanish again...