Wheels

I'm on holiday at the moment, only up into Northumberland with Mum and J, but it's lovely to get away for a bit.  We've rented a cottage a few miles outside of Seahouses, which is only about an hour's drive from Newcastle, if that, and I think Mum and J said it took them about two hours to get here from Edinburgh, although they stopped on the way so driving time may have been less.  Anyway, it's lovely here.  Very peaceful, loads of birds, and only a short drive to the coast.  We've only been to the coast once so far, but I think we're planning on going to Bamburgh on Friday afternoon.

We went to Alnwick Gardens yesterday, which was lovely.  I hadn't been for about five years, and Mum and J hadn't been since shortly after it opened ten years ago.  It's wonderful to see how it's developed and the plants have matured since our last visits, and it was so easy to get around because we hired a mobility scooter for me.  We rang up the day before we went to book the scooter, and when we arrived they had it ready and waiting for us.  They gave us a map of the grounds highlighting all the accessible routes, which is most of the gardens, and they even let the mobility scooter into the cafe and the shop.  It was similar today when we went to Alnwick Castle - we rang up this morning to book the scooter, and they had it waiting for us at the car park when we arrived.  We had a wander around the grounds, and watched some broomstick flying lessons (Alnwick Castle is, after all, Hogwarts in the Harry Potter films), read about the castle's history, and enjoyed the brighter-than-expected weather.  When it came to going inside the castle I had to park the mobility scooter up at the door and go up the few steps to the entrance.  I said to the curator at the door that I had mobility difficulties and he radioed upstairs to have someone waiting for me with a wheelchair up there. Mum and J were told to take the stairs like everyone else, but that they'd be met at the top, whilst I was taken through into the private quarters where the Duke, Duchess, and their family live.  Obviously I didn't get a good look around, but I got a little peek while I was escorted to a lift.  I have to say, it is the tiniest lift I have ever come across, and certainly not for the claustrophobic as you'd be hard pressed to get two adults in it.  Anyway, it was a short ride and it did the job.  I was met on the first floor by another curator (I'm not sure that's the right word ... perhaps it ought to be steward) who had a wheelchair and my parents with him.  We had a good nosy around the part of the castle that's open to the public, getting slightly caught up in a guided tour, but it was very interesting so I didn't mind at all.

When we'd finished our little tour around the inside of the castle, I was taken back into the tiniest lift in the world, but then had to wait a little while until I could be escorted out of the private quarters downstairs because two other wheelchair users were coming down after me.  I was given a seat while I waited, and while I sat there the duke came along to ask the curator/steward person something.  This gave me the opportunity to thank him for allowing me into his home, and he thanked me for thanking him :o)

Just as happened yesterday when we were leaving the gardens, as we were leaving the castle today it started to rain.  We made tracks back to the cottage and after dinner have had a quiet evening either reading or doing cross-stitch.

Tomorrow I get my new car.  Yes, even while I'm away.  As I'm only in Northumberland, the car bods said that they could deliver my new car to my holiday address!  This is fantastic.  So tomorrow, after the car's been delivered I'll be popping back home to pick up Taz, because up until now I've only had Wheelie (my attendant wheelchair) with me and Mum finds it incredibly hard work pushing me in it.

I am still so hugely mixed about my new car.  I'm loving the thought of regaining the independence I've had in the past when I've been able to get out and about easily, and I'll be able to take Taz with me, but I'm hating what it represents - my increasing disability.  It's perhaps made harder by my having loved MacTavish - my Meriva -  and not really wanting to part with it.  The Meriva is a great drive, and has some nice little luxuries. The Berlingo is a fun drive, from what I remember from the test drive, but is otherwise practical rather than luxurious.  It will be good.  It will be good.  I have to keep telling myself and reminding myself of the positives ... but I could almost cry for the loss of my mobility.  I won't, because I don't like to get all 'woe-is-me' about these things - it's boring and it doesn't change anything - but it does throw in my face the extent of my disability, and it can be difficult to think back on how life has changed over the years.  Anyway, that'll be stuff for another post sometime, maybe.

Maybe I'll feel better about my new car when I've had a chance to drive it around a bit, which I will tomorrow when I go back to Newcastle to get Taz and then come back here to enjoy the last few days of holiday.

Allsorts

Oh dear, yet again I seem to be apologising for the lengthy gap between posts.  I truly am sorry.  Life has been busy lately, but things have now slowed down again for a while.

So one of the things that's limited my posting has been on-going problems with my left hand.  I've told you in previous posts how I had carpal tunnel syndrome surgery back in May, and how I've developed some complications post-surgery.  I'm still seeing the physio every week and things are improving a little bit, very very slowly, but no major positive change.  I've been doing the massage I have to do, and the exercises, but it's difficult to motivate myself to do this as it's painful and can instigate more on-going pain, tingling, and stiffness.  The physio says it's a matter of getting a balance of doing enough to stimulate healing, but not enough to aggravate things.  For the past 3 weeks I've had to wear a sling most of the time because my hand swelled up causing further pressure on the ulnar nerve and worsening symptoms.  I saw the surgeon again today who said that I should now use the sling as little as possible as the nerves all along the length of the arm need to be stimulated.  He said that it will hurt, but I should try to work through the pain as much as possible.  The physio then said that I should rest my hand in the sling intermittently and not work my hand so hard that the pain gets too much.

When things suddenly got worse with my hand three weeks ago I saw the physio as an emergency and she got one of the doctors to have a look.  The doctor then decided that I needed some nerve specific pain killers, but asked for my GP to prescribe the meds because of the complexity of prescribing for me around my allergies.  So I saw my GP and was prescribed gabapentin, which is actually an anti-convulsive medication, as are most nerve-specific pain meds.

At first, all was going okay with the gabapentin, but very quickly I was feeling nauseous most of the time.  My GP was reluctant to increase the dose whilst I was so nauseous and lacking in appetite, so I was waiting for those side effects to ease off before having the doc put the dose up.  However, once the nausea eventually began to settle I noticed that I was also feeling tearful and my mood generally was a little low.  I was becoming a bit hyper-sensitive and letting things get to me that usually wouldn't cause much more than a slight annoyance.  I read up a bit on gabapentin and found that depression can be a side effect, and as I know that I can't afford to go back down that route after such severe depression in previous times, I went back to the GP.  I saw her yesterday and she's switched me onto pregabalin.  I'm only on a low dose at the moment, and today the pain has been more bothersome (although that could be from the prodding and poking by the surgeon), but I have to have a phone consultation with the GP on Friday when they might increase the dose.

Whilst all this has been going on I've been trying to write stuff for my MA.  I managed to get my module submissions done on time, and even a few days early.  It wasn't easy doing it all with one hand, that's for sure.  Then, of course, I had a fair bit of work to do for my portfolio.  I had to get some done for my supervisor.  I had it in my head it that I had to get work to my supervisor by 14th for our meeting on 21st, but it turned out that our meeting was on 14th and I should have got work to her by 7th.  I only realised this on 12th, so of course, I didn't get it written on time or sent on time.  Thankfully my supervisor is very understanding and although she's not in Newcastle this week so can't meet up, she's going to do this supervision by email.  Thank you, V.

So then there's the car, or rather cars.  Somebody bumped into my current car, MacTavish, and smashed the wing mirror.  The whole thing was twisted sideways and the mirror was wobbling on its post.  Thankfully it was only the wing mirror that was damaged, but it was still extremely frustrating as whoever did it didn't leave a note with any contact details or insurance details.  I haven't been able to drive recently because of all the problems with my hand, so I don't know exactly when the damage to the car happened, but when I did notice then I contacted Motability Insurance.  They've been great.  They sorted out getting it fixed and had the mobile service sent out to me.  They came today and it's all mended, and I'm £75 worse off because of the excess :o(

There was a bit of a rush to get MacTavish mended because I'm getting my new car next week.  I'm actually going on holiday up into Northumberland at the weekend and will be away for a week, but the company I'm getting the new car from are bringing it up to me on holiday.  How great is that?!  I've still got rather mixed feelings about having to get this new car (which still needs a name), but I am getting excited now.  I'm focusing on the positives and know how liberating it's going to be to have a car I can get Taz into.

That's probably enough to be getting on with, but I will endeavour to post again very soon.  I promise.

A mixed bag

Once again I apologise for my absence.  It's far, far too long since I blogged, but I've actually needed a little bit of a break as quite a lot has been going on.  It's also been quite difficult to type comfortably while my hand has been recovering from the carpal tunnel release surgery.  The recovery hasn't been as straight forward with my left hand as it was with my right, and when I went back to clinic to have the stitches removed the wound fell open.  The nurse put an antiseptic dressing on it, steri-stripped the wound back together, and told me to come back this week to see how it was getting on.  Thankfully, when I went back on Wednesday the wound seemed a fair bit better - at least it was holding together - but it's a lot more painful/sensitive than the other one was, it's still very swollen (to be expected really), and there's a bit of an odd lump at the base of the wound that's very tender.  I've been told that I may need some ultrasound therapy on it from the physios, but to see how it goes over the next couple of weeks and get in touch for physio after that if it's still really sore.  One relief is that I now have the big bandages off, and whilst I still need to wear a tubigrip support bandage sometimes, I'm generally much more dexterous again, and typing isn't anywhere near as painful as it was.

This time of absence has been very mixed aside from the slight anxieties of my hand not healing brilliantly.  Very sadly a friend from church died suddenly and unexpectedly at the end of March.  It's been quite a shock.  It doesn't matter that she was seventy years old - that's no age at all these days - she was a lovely person who always went out of her way to find out how I was doing, even though things weren't always straightforward in her own life.  It's her funeral on Tuesday, but I won't be able to go as I'm up in Edinburgh at my mum's for a bit of a break.  I'm sorry not to be going to celebrate J's life at her funeral, but I will have some quite time of contemplation and remembering her on my own on Tuesday afternoon, and if I get a chance to get to the cathedral sometimes while I'm here then I'll light a candle for her.  Rest in peace, J.

This past week has also seen the first anniversary of my step-brother's suicide.  It was a year ago last Tuesday that he went missing and killed himself and three days afterwards that he was found.  I've thought about him a lot.  I've missed him.  I've thought about my step-sister A and my step-brother N (Nn's sister and brother) a lot.  It's still all so very sad and tragic.  W came round for a bit on Tuesday evening to keep me company :o)  That was lovely.  We had a quiet evening doing cross-stitch and eating chip shop chips with baked beans added at home.  An evening of comfort food and comfort activity :o)  Just what I needed.

Not everything has been sad though.  There have been positives too, which is why I said that it's been a mixed time.  Firstly, there's been the positive of the clocks having gone forward, which means that we've made it through the winter and the long, dark nights that come with winter.  I've been enjoying the lighter evenings and going for trundles in the park to make the most of them.  I went to local park here by my mum's this evening with my step-dad, which was lovely, and it was fabulous that it was still light when we got back at 7pm.

The other excellent thing that has happened since I last blogged is that I have been granted funding by Motability for a wheelchair accessible vehicle (WAV) and a powered ramp for it.  They're not giving me funding for privacy glass in the rear windows as I said it was for security rather than privacy, but to be honest I'm not terribly surprised and I'm actually going to fund this myself.  At first they were being a bit iffy about giving me funding for a powered ramp, questioning why I couldn't manage a gas-assisted ramp, despite my GP having written a letter saying that bending down to deploy and lift a gas-assisted ramp requires a change in blood pressure which I cannot maintain and would very likely be frequently passing out.  One of the cars that I test-drove actually had a gas-assisted ramp, which I'd tried and couldn't manage, and Bill (the guy from the car converter company) had stated this in his report, along with a suggestion that I'd need a powered ramp.  However, Motability insisted that I try it again and laughably suggested that I flick the ramp back up with my foot.  As Bill said after he demonstrated this manoeuvre to me, 'It's nothing that no premier league footballer or professional athlete couldn't manage' ;oP  Again, he wrote on another report for Motability that I would need a powered ramp, and thankfully they saw sense and have granted me funding for it.  I have now ordered my new car - a Citroen Berlingo - and should get it in about six weeks time.  It may be a little longer (possibly up to ten weeks), but Bill was hopeful for about six weeks.  I'm looking forward to it, even though I hate what it stands for and I'm loathed to part with my Vauxhall Meriva, which I love.  The WAV Berlingo is going to open up my life again and that's invaluable.

The only other little bit of news is that I went to falls and syncope clinic again last week and my consultant doesn't think they can do anything for the POTS so I don't have to go back.  I'm not sure how I feel about this.  Yeah, it's good to be free of another hospital appointment, but it's not great that yet again I've reached the end of treatment possibilities ... not that there are many treatment possibilities for POTS.  I don't think I've actually been discharged, so to speak, but rather that there's not a lot of point in me going back at the moment, as the consultant said that I can get in touch with them if I feel I need to or if my GP thinks I need to be seen again.  I guess we'll just have to see how things go.

That's about all my news for now.  Hopefully I'll be back with you again in the next few days.  In the meantime, have a very happy Easter.

Catch up

It's way over time since I blogged.  Sorry about that, but here I am now.  Since I was last here I think I've got used to the idea of being discharged from the mental health services ... sort of, though I still haven't heard anything from health psychology.  Next week will be the four week marker since my GP said he'd refer me, so I guess if I haven't heard anything by then it might be an idea to get back to my GP and ask if he can chase it up, seeing as he'd said I should hear within four weeks.

I've been somewhat distracted from all the mental health stuff recently, which is probably no bad thing, except that the distraction has been carpal tunnel syndrome surgery on my left hand.  You may remember that I had the same surgery on the right hand at the beginning of December, which has pretty much healed now.  I can still feel some stiffness in the area of the surgery and some slightly altered sensation around the scar, but mostly it's pretty good and the scar is hardly visible.  I had the same operation done on the left hand last Thursday (15th March).  I had to be at the hospital for 8am so W, who was going to be looking after me in the immediate aftermath, came to stay on the Wednesday night.  We actually had a really lovely evening as we went for an early pizza at the Italian restaurant down the road - Vincenzo's (used to be called Peppy's) - before going to Northern Stage to see the comedian Chris Addison, who was very funny.  It was just what I needed to take my mind of the next day's surgery :o)

All went well with the surgery, although I had to wait until the end of the operating list because of being MRSA positive, so I didn't actually go down to theatre until just after midday.  However, I was back on the ward by 12.50pm and we were back home by 2pm!

As was the case when I had the surgery on my right hand, I've had quite a lot of pain, but I've mostly kept it under control with paracetamol, codeine, and nefopam.  Today has been the first day without the sling, and it's been great to have a bit more freedom, although my hand and arm have been quite achy.

So anyway, W was brilliant and looked after me wonderfully all day Thursday and she stayed until Friday evening.  My mum then came from Friday evening until Tuesday afternoon, and it was so lovely to spend some quality time with her while I'm not in hospital.  It was also very lovely to have her here on Mothering Sunday :o)  My dad came round for lunch on the Saturday as well, which was also very lovely.  Mum had made roasted red pepper and sweet potato soup, cheese scones, and courgette and cheese muffins, which were all delicious :o)  After we'd enjoyed the little feast the three of us went for a walk/trundle in one of the local parks, then came back for a cup of tea before Mum took Dad back home.  My parents split up when I was nine years old, and for many years they had a volatile relationship after that.  Lovely times with both my parents (especially just with the three of us) have been a rarity in my life, and it may well be something like thirty years since I've had such a lovely time with them on my own as I had on Saturday.  It felt special somehow.  My parents have known each other since they were sixteen years old, and I think they both enjoyed talking about those young days together...

I hope we can all do it again sometime.

Mum and I had been going to go out to a National Trust place on Sunday - to Gibside - but Mum had also wanted to catch up with one of her friends and the only time this friend could manage was sometime on Sunday afternoon.  Still, we went for a walk/trundle in the park and had a nice time together.  And on Monday evening we went to a talk at the university by Tess Gallagher, which was very interesting and good fun too.

During her stay here Mum did a lot of crochet, using one of two books that I gave her for Christmas.  She's been teaching herself and has learnt a lot in such a short time.  She's making various tray-cloths etc at the moment while she teaches herself and practises new stitches/patterns.  They're amazing, and she makes them so quickly.  It made me want to get on with some more cross-stitch.  I ended up buying several online, which were all delivered while Mum was here, and now I'm desperate to be getting on with them.  It's difficult with only one fully-functional hand, but I think I'm going to be giving it a go and seeing how I get on.  I'm impatient!

Mum went home on Tuesday and I'm missing her already.  It won't be long till I see her again though, as I'm going up to Edinburgh in a couple of weeks time for Easter :o)  I booked my train at the beginning of last week and J, my step-dad, has booked the ramp for me to be able to get into their house, so we're all set :o)

Things are still in progress regarding my grant application to Motability.  I've had a couple of phone calls from them, so I know they're considering my application, and I'm hoping that I might hear from them with an answer sometime next week.  I'll let you know when I know.

Well that's about it for now.  A bit of a catch up post.

Contemplation

If I'm honest, I'm finding things difficult at the moment.  I still enjoy the things that I do, but I'm so tired and get exhausted so easily, it's difficult to stay as positive as I'd like, perhaps because there's so much more that I'd like to be doing.  It also doesn't help that since coming out of hospital I've had to have yet another course of antibiotics, which have played havoc with my insides, so that's added to the grottiness alongside the beginnings of the infection for which the antibiotics were prescribed.

Then there's the whole new car thing.  It's good that there is the possibility of a new car, and it's good that Taz will be able to go into whatever new car I get, but the fact that I need a car that will take Taz is difficult to get my head around because it signifies another decline in my health.  Yes, I know that it will open up my independence again, and that will undoubtedly be good for my mental health, but I find it hard to think that it's come to this, that I have so little mobility now.  It's not just the asthma, it's the POTS too.  It's the combination of the two.  It's all the other bits of me that are letting me down too, and in combination with the asthma and the POTS.  None of this is what I expected from life...

I've been filling in the forms for a grant from Motability towards the cost of a new car and the powered ramp that I'll be needing.  The forms necessarily make one concentrate on all the things that one can't do, nowhere near as much as DLA forms, but still, the focus is on how your body fails you ... and to some degree, what few prospects you have, I have...  Okay, so I'm hoping to be able to develop my writing, finish writing the book I've started about my experiences of asthma and hospital, get published, but what about all the things in life that I'd hope for ... like family, children.  That is the biggest sadness for me - that I don't have children.  I always imagined, and hoped, that I'd have maybe four children and a loving husband, but instead I have no children and no hint of a relationship.  I might not be the most physically attractive woman on Earth, what with being overweight, but I'm not the ugliest either, and I think I probably have a lot to offer in personality, but the truth is that chronic illness and repeated near-death is not attractive.  That is something I can do nothing about.

There are so many things that I would love to have done and would love to see as possibilities in my future.  So many things that there's no way I'll do.  The impact on my life of the asthma and everything else has been enormous ... devastating in some respects, even though it's given me different opportunities as a result of having lost the chance of some many other opportunities.  It's tough.  Most of the time I get on with it, and I appreciate all the things I can do and all the things that I do have, but sometimes the reality of the losses hits hard.

Some time ago now I asked for a referral to the health psychologist attached to the difficult asthma clinic run by my consultant so that I could have some support for the impact that the asthma has had on my life.  After a long wait I had the assessment meeting, which I had to go to from the ward as I was an in-patient at the time.  I wasn't feeling great either physically or emotionally, but as I knew that I'd have the rest of the admission to get through, I had to hold myself together to a certain extent, which perhaps didn't do me any favours.

A lot of years ago now I suffered from terrible, debilitating depression, and for nine years of that time I saw a clincial psychologist from the health psychology department.  L was incredibly patient with me and a fantastic support, seeing me through the worst depression of my life, and ultimately all the way through the other side of it.  I had come through a lot, somewhat unexpectedly.  But the things that caused that terrible, awful, horrendous depression weren't the things of chronic illness.  Unfortunately, the health psychologist attached to the difficult asthma clinic didn't recognise that.  She had read my notes from all those years ago and saw how far I'd come, without any acknowledgement of how my physical health has deteriorated since then, so I got a verbal pat on the back for having come so far and sent on my way with no offer of support.  It was far from satisfactory, and it also surprised both my GP and my psychiatrist.  The psychiatrist has said that I don't really need the psychiatric services any more as my mental health is generally good these days, and has been so since 2003, but she has also said that as there doesn't seem to be anybody else who is willing/able to give me the support I need to cope with repeated life-threatening asthma attacks, and all the other health problems I have, then she will continue to see me.  At first she had said that she'd see me every six weeks, but gradually that support has waned and it is now four and a half months since I last saw her.  I was supposed to have an appointment with her on Monday last week, but she cancelled on me, and not for the first time.  The replacement appointment isn't until the middle-end of March, and to be honest I don't feel very supported by her at all any more.  I wrote to her last week expressing my dissatisfaction, but I don't suppose I'll hear anything from her before the rescheduled appointment.

I had to go to see my GP on Monday.  I told him about the cancelled the psychiatrist appointment, and I also mentioned, almost in passing, that I'm feeling a bit low at the moment, finding the chronic ill-health difficult, and the impact it's had/having on my life tough.  He asked if I'd ever seen a clinical psychologist from the health psychology department so I told him about my years of seeing L, and I told him about the assessment by the health psychologist at the difficult asthma clinic.  He immediately suggested a referral back to health psychology, but to the department rather than to the difficult asthma clinic.  I agreed that it might be helpful, although I'm a little nervous that I might end up seeing the person who I saw at the difficult asthma clinic and who was a great deal less than helpful on that occasion.  The GP - Dr Cg - said it'd probably be about a four week wait and asked me if that would be okay.  I thought it would be okay, but he said that if I changed my mind and I needed to be seen sooner then I should get back to him and he'd speed things up for me.  I am so lucky to have such great GPs.  There are five or six GPs at the surgery I go to and I have complete confidence in all of them.  Anyway, I'm now waiting for that referral to come through and to receive an appointment in the post.  For all that I'm reluctant in some ways to go back to therapy, I think that perhaps I need something at the moment.  I am struggling a bit and I know that I can't afford to let it get anywhere close to depression, so I suppose the first step in managing it is realising that I need more professional support than I'm currently getting and to accept that support now that the opportunity has been offered.  Who knows what will happen at the assessment appointment, but I need to make it clear to whoever I see that the issues I have now are very different from those I dealt with when I saw L nine years ago.  This is about now and the future.

Wheels

This week has been a bit crazy, which is why I haven't been around these parts much.  It's daft because it's exhausting me, and so ultimately it's counterproductive, but sometimes it's just how things work out.  One of the things I've been doing this week is test-driving WAVs (Wheelchair Accessible Vehicles), doing three test-drives in two different models of car. 

On Tuesday I tried the Renault Kangoo.  The guy from the conversion company - Bill - took the car round the back of the house where my wheelchair access is and I met him in Taz.  He showed me how the ramp worked, and although it was light enough as it was power-assisted, I think it will be too much with the POTS because the bending and standing affects blood pressure, which I don't maintain well at all.  It was quickly decided that I'd need to apply for a grant to cover the cost of a powered ramp (£1200), so that was a very useful thing to discover and discuss.  When the ramp was in place I steered the chair up it and into the car, and then secured it down.  All very easy, especially as I don't need to be in the chair once I'm in the car so I can reverse the chair up the ramp without actually sitting in it, and there's loads of space for the chair both on the ramp and in the car.

Time for the test-drive itself and all started smoothly enough, but a few minutes down the dual carriageway I could hear a kind of clicky flappy sound that I mentioned to Bill.  He said he'd run over something in my street when he was driving the car round the back, and had hoped he'd avoided getting a flat tyre, but now he wasn't so sure.  Only minutes later, whilst caught up in the middle of a load of road works, the car was bouncing and making a pflp pflp pflp noise.  Yup, we had a flat tyre.  I pulled in amongst the road work cones, Bill got out, confirmed the flat tyre, and proceeded to get out the canister of foam stuff that is supposed to fill a flat tyre until you can get to a garage for a new one.  It seems that most new cars don't come with a spare wheel these days, and this was certainly the case with the Kangoo.  Unfortunately, it turned out that the canister didn't have enough foam in it to fill the Kangoo tyre either, so it seemed like we were a bit stuck.  The guys doing the road works (actually, they were gathering the cones in) reversed their truck up the road, parked behind us, and came to see if they could help, having thought that they might be able to change the tyre for us, but of course with no tyre to change they were left just standing looking at the flat tyre that was now partly filled with foam.

The two road works men and Bill stood around for a bit looking at the floppy tyre, and wondering what to do.  Bill then decided to phone his office, which is attached to the garage where they actually make the converted cars they sell.  It's only a few miles away from where we'd broken down, so he asked if someone could come along with a new wheel and fit it to the car.  However, the road work men needed to get on with collecting the cones in, so I had to move the car with it's flappy tyre a little way down the road into a bus stop.  This rather annoyed a bus driver a little later on who thought I'd just parked there for fun.

We waited for what seemed like ages, but it gave me the opportunity to think of questions about the car, try out the radio, discuss grant applications, have a little peek around the car (in a very limited kind of way as I wasn't about to get out and walk amongst the traffic), and then get bored of waiting.  Eventually the bloke from the converters garage arrived with the new wheel and a car-jack.  Bill got out of the car whilst I stayed in it and got tipped up sideways while the garage bloke got the car-jack into place.  This was not the most relaxing situation to be in as I was, by then, being tipped towards the traffic moving speedily past me at rather close quarters as the cones had now all been removed and speed restrictions lifted.  I don't recommend finding yourself in this position if you can help it.

At last the wheel was changed and we could continue on with the test-drive, which only lasted another fifteen minutes or so, but it had taken over an hour and ten minutes to do a twenty five minute (if that) drive by the time we got back.  We sorted Taz, getting him out of the car, and I came back in the flat while Bill drove the car back round to the front.  Just as I was parking Taz back up in the living room I realised that while we were out, the cat had weirdly pooed on the living room floor.  He never does that, and there doesn't seem to have been any reason for him to do so this time either, but it really was not what I needed to come back to.  I swiftly cleared that up and then opened the front door for Bill to come in so we could both have a well-deserved cup of tea while we filled in the Motability assessment form.

Although I was due to test-drive a Citroen Berlingo with a different converter company on Friday, I arranged to do one in a Berlingo with Bill on Saturday as well.  Bill suggested that I speak to Motability in the meantime to discuss the possibility of grants.

So a guy called Phil came with a Berlingo on Friday.  At first glance it seems pretty similar to the Renault Kangoo, but when actually driving it felt different - better acceleration, less like a van and more like a car, a bit quieter, a bit more refined.  I went the same route on this test-drive as I had done on Tuesday.  This time there were no flat tyres, but at almost the exact same spot that Bill and I had got the flat tyre, we got caught up in the almost immediate aftermath of a crash between a car and a small truck, probably because the road works cones were out again and someone wasn't paying attention.  Thankfully the accident didn't look too awful, but several police cars and an ambulance quickly arrived on scene.  We got through the backed-up traffic eventually and continued on with the test-drive without any more events, but it hadn't been a very quick journey.  Anyway, the upshot was that I preferred the Berlingo to the Kangoo, although I didn't like the ramp provided by this converter company as is didn't fold so blocked most of the view out of the back windscreen.  Oh, and this conversion company said that they can't'/don't do powered ramps, so that kind of rules them out of the picture.  Not that I mind very much, because Bill's company is local and I like supporting local business.

Bill came back on Saturday with his Berlingo, which also had three back seats as opposed to only the one in the car that Phil had brought.  Phil had said that the XTR Berlingo (top of the range one that he brought) only came with the one back seat, but one of the things that had originally attracted me to the Berlingo was the possibility of having all three back seats if I wasn't taking Taz.  Well, Bill and I worked out that it would be possible for me to get Taz into the boot of the car and still have two back seats up and able to be used as I wouldn't need any leg space for the wheelchair as I won't be travelling in Taz.  This is a huge advantage.  Also, if the hospital could adapt the fitting of the control panel on Taz so that it swings sideways or slides out of its current position, then I'd be able to have all three back seats of the Berlingo available for passangers or for luggage storage whilst still having Taz in the boot.  It was a tight squeeze, but Taz fit snuggly and safely, and it would mean that on a long journey I could put luggage on the back seats and have really easy access to Taz at any service stations I stop at.  Bill also said that they could fit a bit of carpet onto the ramp for me to stop the metal ramp tapping against the metal back of the wheelchair.

The Berlingo Bill brought on Saturday was a VTR, so the model down from what Phil had brought, but also the model that I'd most likely get funding for as the XTR has an extra £700 advance payment.  Having said that, Bill said that his company are providing the VTR Plus at no extra cost until the end of March, and that has a few little extras which would be nice.

For once, the test-drive went ahead with no dramas - crashes or flat tyres or anything else - and I enjoyed the drive of the Berlingo again.  I think I'm also beginning to get a bit more used to the idea of needing a WAV, so am beginning to be able to enjoy the process of choosing the car.  I've pretty much made up my mind that the Berlingo is the car for me at this time, so the next step is to apply for grants.

I spoke to the grants department at Motability on Friday afternoon, at first, after an initial basic assessment, being told that I wouldn't qualify for financial assistance.  I thought I had explained what I needed, but I obviously wasn't clear enough, because the woman doing the assessment seemed to think that I was asking for assistance for a vehicle that would allow me to drive from my wheelchair.  I don't need that, and I'm not suprised that I don't qualify for financial help for a 'Drive-from' WAV.  After questionining my eligibility for a grant, and working out the misunderstanding, the woman did another initial assessment that indicated that I would most likely be eligible for financial help, although she couldn't give me a definitive answer.  I still have to make the official application, and she sent me the application forms straight away.

I've spent some of today filling in the grant application form, and printing off some of the required accompanying evidence, although I still need to get a letter from my GP and then sort some of the other paperwork.  However, once that's done then I'm pretty much ready to send the forms in, and Bill said that Motability are currently getting through applications quite quickly, so he reckons that I could be getting delivery of my new car by early/mid may.  Obviously I can't place an order for the car until I know what funding I have, but things are now getting sorted and a resurgence of my independence is in sight.

In hand

I have been a bad blogger.  I apologise profusely, although to be fair, it hasn't been easy to type much over the past couple of weeks because of the surgery to my hand.  However, that is now healing and typing is much easier than it was.

For the first week after the carpal tunnel op I had to wear a sling, which made life trickier than usual, especially as I'm right handed and the surgery was on my right hand.  The sling kept everything rested though, and helped the swelling.  However, I was naughty one evening, took my arm out of the sling and tried to use some nail clippers with my right hand, with the consequence of a great deal of pain, a scream that probably woke my upstairs neighbours, and very little success with cutting my nails.  I had to dose myself up with analgesics to get any sleep that night and the pain was still much worse in the morning than it had been before my attempts at nail clipper usage.  I learnt through my stupidity though, and haven't tried anything quite as daft since then.

Ten days after the op I had to go back to clinic to get the wound checked and the dressing reduced.  All went well and the scar seems to be healing well, although the surgery site is still fairly swollen.  I'm not surprised as it's still only a short time after the op, and full healing can take several weeks.  It was a relief to get the big bandage off and replaced by a much smaller, support bandage that I was told to keep on for four or five days.  After the nail clippers episode I decided to be good and do as I was told.  I left the smaller bandage on for four days and then thought I'd see how it went, but my hand - in particular my thumb - felt very precarious and quite painful, so I put the bandage back on for another couple of days, only removing it yesterday.  Since then I've intermittently worn a Tubigrip support bandage, mostly when things have felt unstable or been getting very tired an achy, but I think it's also good to let the air get to the scar and be able to moisturise the scar frequently too.  It's odd how dry my hand has got, and I don't want the new skin getting so dry that it cracks.

Obviously there's still a fair bit of healing to be done, especially inside, but I'm gradually getting a bit of strength back in my grip, and although there's some internal tightness and stiffness, movement is generally good.  It's quite amazing what can be done.  Best of all, I've been pretty much free of carpal tunnel syndrome symptoms :o)

Just before I had the surgery I asked how long it would be until I could drive, and the surgeon said not for at least ten days and then it would depend how things were going and what was said in clinic.  To be honest, I was surprised it was as little as ten days, and even more so as those days wore on.  I came to the conclusion that I didn't think I would be safe to drive with such a weak grip even if I was told in clinic that it would be okay, so I resolved myself for at least a couple more car-free weeks.  As it turned out, I was told in clinic that I wouldn't be able to drive probably for another four to six weeks when I'm seen in clinic again by the consultant on 20th January.  This is longer than I'd anticipated, but it's fair enough.

However, when I am given the all-clear to drive again I will be looking into replacing my car.  As I explained at the beginning of the month, I have a Motability car, which was new only last February, but my needs have since changed and I now definitely require one in which I can get my electric wheelchair.  I hadn't been able to find any information on the Motability website about the possibility of doing this before the three year contract was up so didn't know if it was possible.  I contacted them first through email and subsequently had a very helpful conversation on the phone.  It turns out that it is possible to change my car before the contract on my present car ends as it is due to a change in needs, and as this is the first contract I have cancelled then they will waive the £250 fee.  Unfortunately I lose the right to the £250 bonus for looking after the car well during contract, but that's not unexpected.

One of the difficulties I face is that Wheelchair Accessible Vehicles (WAVs) have a much bigger down-payment than I can afford, and of course there's also the cost of any added adaptations I may need such as a lift for the wheelchair.  However, there may be the possibility of some grants available through Motability for both the down-payment and adaptations.

I've been sent the details of the various 'converters' - the folk who convert possible vehicles into WAVs - and been told to contact several.  Apparently most are national companies so I needn't stick just to those who are local, but instead discuss my needs with a variety of them who will then advise what they think I may need and will bring possibilities to my house for me to test drive.  Excellent.  After I've done that, I'm told I need to speak to the people at the Motability grants department and tell them what the converters have advised and what my preferences are.  Grants are means-tested so I'm guessing there'll be lots of complicated forms to fill in, and I don't know how much of the down-payment or adaptations will/can be paid for by them.  I've also been told that the grants department won't always give money for the car that you want, but rather what they and the converters deem is suitable, which I'm guessing could well be less than what you'd like.  However, if it maintains my independence then any suitable WAV has to be better than none.

I'm still loathed to part with my lovely Vauxhall Meriva, and I'm having to make myself think about the positives of getting a WAV.  I cherish my independence and this is a means to keeping it.  That's what Motability is about at the end of the day, so I remind myself of that all the time that I'm looking into replacing MacTavish (my Meriva).  I also console myself slightly with the thought that I don't have to part with him immediately, because even after I've done all the hard work of finding the best WAV for me, and applying for grants, and ordering the car, I'll still have to wait between twelve to sixteen weeks before I get the new car.  It's looking like it'll be late spring or even early summer before I get a WAV, so I may have come to terms with parting from MacTavish by then.

I can't do anything much about it at the moment anyway, because I can't drive at all until my hand is healed and I get the driving go-ahead from the surgeon.  There isn't a lot of point in doing a great deal of research or contacting WAV converters until I can actually test-drive some vehicles ... although I might start looking into the basics of boot opening heights against the height of my wheelchair so that I have a bit of an idea of what to look at when I contact the converters...

Getting about

I got a new car in February, my second Motability car, and I love it, but I'm in the process of finding out if it's possible to change it before the three year contract is up.  I'm loathed to change it as I love my Meriva, but I can't get my electric wheelchair into it.  My mobility is rubbish these days, and I'm needing to use Taz - my electric wheelchair - more and more frequently.  It's fine if I want to get out locally or even go on the bus into town, but it's no good if I want to go further afield.  If I'm going away then there's the possibility of the train, which I have used on a couple of occasions now, and will be doing so when I go north for Christmas, but that's not enough.

In a couple of weeks time my step-mother is singing at Alnwick Gardens with the choir she's in.  I want to go and hear and support the choir, but I know that I won't be able to walk that far or stand for that long.  I could take my non-powered wheelchair in the car, but that means relying on someone else to push the chair.  It's hard work pushing a wheelchair, and there aren't that many people I feel I could ask anyway. 

Then there's the aspect of independence.  I might not be able to walk much any more, but that doesn't mean that I'm ready to give up my independence.  I'm only 37, and whilst there are many things that I can't do any more, or things that I always wanted to do but never will, there are some things that would still be possible for me to do if I had a car that I could get my electric wheelchair into.

I've been putting off finding out about changing my motability car.  I don't want to admit to myself how limited life has become, but the time has come to face the truth.  I need to see this as a positive step - as a means to maintain my independence - but it's not always easy to see the positive when it's on a background of increasing disability.

Coming together

I'm getting sorted. I've slightly decluttered the flat, not by actually getting rid of anything (God forbid! ;oP ), but by buying some more book shelves. I've had books piling up on tables, my desk, on top of other books on shelves, and doubling up on each other too. It's been annoying me for a while, and I thought I'd run out of space for new bookshelves, but I solved the problem by replacing some that I had with longer ones and giving the old ones to W. A rather wonderful friend and his oldest son came round to put the new shelves together for me, and after some sorting and re-organising I now have some spare shelf space on all my bookshelves even though all my books now have homes! Hurrah! I find that getting my physical surroundings straightened out often helps to get my head a little less cluttered too, so it's a good thing all round :oD

As you know, I was feeling a bit vulnerable and overwhelmed by the whole swine 'flu thing. Way back at the end of October/beginning of November I wrote to one of my GPs after a series of infections and admissions. I was worn out - physically, emotionally, spiritually - much as I have been recently. I wasn't asking for anything from the doc; I just needed to off-load. When I was writing it I wasn't sure if I was actually going to send the letter. I wanted to, but it was very much an emotional out-pouring, that didn't necessarily make sense in places to anyone but me ... or even me, but in the end I did send it and I'm glad that I did. I hadn't necessarily expected a reply, but when I was at the surgery picking up a prescription shortly before Christmas, the GP I'd written to popped into the reception area so I asked if she'd got my letter. She said, with a friendly smile, that she had and to make an appointment to see her sometime to talk through some of it. After having to cancel the first one I made because of being in hospital in Edinburgh, I eventually got to see Dr P last week. I knew that she wouldn't be able to do anything - to change my situation - and I wasn't expecting her to, and as I said before (and in my letter to her) I wasn't asking for anything in particular, but all the same the appointment was really helpful. I dunno, it helped by just talking through some of the mess in my head from the relentlessness of chronic illness and repeated life-threatening illness, with an opportunity to cry about it without being presented with 'there's always something in the pipeline' syndrome that negates my anxieties and upset, and really only serves to placate the person who's saying it, and they're only saying it because they can't cope with any thought of the reality of death. *Ramble over and takes a deep breath* So yes, it was helpful. Dr P listenend, and understood, and offered some advice, and talked, and was fairly aghast that the health psychologist hadn't been able/willing to offer me anything, and she gave me loads of time. Appointments are supposed to be ten minutes, but she must have given me maybe forty-five minutes. Okay, so this won't have pleased others waiting to see her, but it was the time I needed and she was happy to give it to me. She, like most of the doctors in the practice, has known me for a lot of years now and has seen me through a heck of a lot - including very severe depression through my twenties - so she knows me well. We talked a little about how things used to be and how things have changed on many different levels, and I was of course right that she can't change my situation now, but just having that time to verbally vomit was invaluable, and I came away feeling a lot more together. Dr P assured me that it had been more than okay to have written to her, and even said that I was very welcome to write again, anytime that I wanted to, or if I preferred then I could make a double appointment to see her again, whenever. She was lovely. She just gave me the time and the space that I needed, and the opportunity to cry and splurge and say, 'Sometimes it's crap and it's overwhelming and exhausting,' and even though she may not have the experience of it herself she appeared to truly understand. I feel somewhat emotionally refreshed by the appointment, and will definitely go and see her or write to her again if I feel I need to.

And then car-related things began to come together. They're a bit long and complicated to go into the nitty gritty of, but the upshot has been that despite work needing to be done on my old car after its bump, I got my new car on Monday. I love it! I'll get a photo of it sorted out at some point and put it up here, but that might not be for a day or two. In the meantime, here's a link to the website for the type of car I've got - Vauxhall New Meriva. I do like my new car very much, and it's such a relief to have all the worry about whether or not the crunch in Crotchet (the old car) would mess up timing of getting MacTavish (the new car), and all the hassle with insurance etc. No, that's all in hand, all been paid for, and all sorted out :o) The stress is gone and I can get on with enjoying MacTavish, and trying to learn my way around all the controls and buttons and different lights, which reminds me that I must get the instruction books out and have a look at them to familiarise myself with some of it.

The next thing is study. As you can probably imagine, I'm a long way behind with my studies again after my recent adventure with the flying pigs (swine 'flu). I had an assignment due in for my OU studies on 7th January, and the End of Module Assessment for my last postgrad module at Newcastle University was due in on 10th January. Obviously I missed both deadlines. My tutors have both been great, with my OU tutor telling me not to worry at all about any assignment deadlines apart from the last one and the ECA that are notoriously difficult to get extensions for from the OU; and my tutor at Newcastle just asking me to let her know when I was home so we could go from there. I contacted them last week and I have a new deadline of 11th February, which is only Friday next week, but I got the impression that it may be a fairly flexible deadline. I kind of hope so, because although I would have liked to have got a lot done during this past week I've felt rather brain-dead, and for the first little while I was concentrating on that OU assignment that had been due on 7th January. I re-read the course material related to that and continued on with the few notes I'd made for the essay when O and I were away, then I set to and got the thing written. As ever, one of the most challenging things was getting in all the info that was being ask for into the stupidly low word count. I did it as best as I could in the circumstances, sent the essay off, and a few days later had the marked one back - 82% Not bad. Not a First (with the OU a First starts at 85%), but I'm pleased with it :oD I'd been going to get down to my postgrad EMA for my last module (Writing for Young Adults) today, but I haven't been feeling too well - absolutely exhausted, thumping headache all day, sleepy tired as well as physically tired. I've glanced in the general direction of study instead, and I'll let it tick through my mind overnight so that maybe I can get a bit done tomorrow morning. Having said that, tomorrow is rather busy with pulmonary rehab in the afternoon, followed by a quick return home for a bath and change of clothes before heading out to the first class of my second postgrad modules (Memoir Writing). I'll just have to hope that I'm feeling okay at the weekend and work hard throughout.

All in all, things are coming together, I'm feeling more together (despite being a little off-colour for some reason), the new shelves have been put together, my physical surrounds feel a little more organised, all the car stuff is sorted, and I'm all together rather pleased with my new car. Things ain't bad :oD

Splosh and crunch

I got out of hospital on Friday as I thought I might :oD It's been great to be free! I went back to Mum's for a few days and had some wonderful TLC, and then despite Mum's (understandable) worry about my coming away so soon after being so poorly, I made it to Lancashire on Monday with O for some of our curtailed holiday.

When I left the hospital on Friday I was still very much inflated with copious amounts of fluid retention, which was making me terribly tender and miserable. It does appear to be shifting now, thanks to the furosemide, although I'm still sploshing about in my own body somewhat, but nowhere near as much as I was. It's such a relief to have got rid of some of the water :o)

So O and I set off from Edinburgh on Monday afternoon and had a very lovely drive through the countryside along the A702 and A74, in bright sunshine and with pretty views. Just as I was feeling that I could do with some lunch and a rest we happened upon the Annandale Road Chef, which, being a motorway service station, you wouldn't expect to be anything special, but it was extremely lovely! How often do you hear that said about motorway service stations?! As we drove in there was a small gaggle of white geese on the grass verge, peering in our direction and looking rather welcoming, and then as we sat in the coffee shop inside we had a lovely view over a lake with ducks washing and preening themselves, and dipping in the water, and swimming about. We didn't make use of it as it was a bit chilly, but there was a patio area next to the lake that looked as though it would've been a nice place to sit out in the summer. It really didn't feel at all like a service station, and was most relaxing and refreshing :o) When we went back out to the car we were greeting by one of the geese and several ducks. They were extremely tame and followed us right up to the car. In fact, at one point I thought that perhaps they were going to jump into the car to munch on any crumbs they could find on the floor (which would've been quite a lot as it needed a good clean out). We sat for a while with the door open as the ducks and goose came up to say hello, and nibbled my fingers. I've been nibbled by ducks before, but I think that was possibly the first time I've been nibbled by a goose. It's not unpleasant ... not something I'll take up as a hobby, but it didn't hurt. After the goose had had a little munch on me and it was seen off by drake that wanted his turn, I was about to close the car door when I noticed a tiny chaffinch sitting on the wing mirror, which promptly hopped onto the door frame and sat watching us. As it leapt up there a wagtail popped itself on the wing mirror and it too watched us, although a little less intently. The chaffinch was so tame it almost let me touch it. I didn't want to frighten it off so I stretched my hand out ever so slowly, and I must have got within 10 cm of touching it before it got a little too nervous, but it didn't fly away; merely hopped sideways along the door frame. It was beautiful and so delicate. I could see every tiny little, rusty-coloured feather, and the slight up-turn of its beak at the very end; it's beady, little, black eyes keeping an inquisitive eye on me, but generally unafraid. I think it only flew off because it realised that we didn't actually have any food to give it, but I did enjoy it while it was there :o)

So we drove on and the A74 turned into the M6 when we hit England, but the far north end of the M6 isn't too bad and the traffic wasn't horrendous so the drive was okay. O and I had half arranged to meet a friend who lives in Cumbria at the Tebay services just past Penrith. As it happened this friend was too busy to meet up (very sad, but maybe we'll see her tomorrow), but we decided to stop for a cuppa anyway as we'd been told that these services were also particularly nice. They are. There's a farm shop; a lovely cafe with huge windows that look out onto a view of a pond with ducks, beyond which is an expansive field that gives way to rolling hills of green and purple. Although the sun was beginning to set by now the day had been bright and cheery and I could feel myself begin to relax into holiday mode as I sat there drinking a decaf latte and breathing in the life of the countryside. We had a little mooch around the farm shop before heading off for the last 45 minutes of our journey to Barnacre Cottages where we're staying in The Piggeries (how ironic given my recent illness with swine flu ;oP ). Although Barnacre Cottages are only a short way off the M6 the road between them is so small, twisty, and turny that it must take about 15 minutes to drive up here, but it's worth it because it's lovely.

So we arrived, and I pulled in to the little parking alcove for The Piggeries, and I reversed to straighten the car up, and I crunched the car into the wall behind, and the back windscreen smashed into smithereens, and the boot panel was dented in a big way, and the windscreen wiper was ripped from the car. I wasn't best pleased with myself. After a little frustrated cursing at myself I got myself into organising mode and began with phoning Motability, through which I lease my car. They were terribly helpful and sorted out an appointment for us with Autoglass to get the windscreen fixed that night. Unfortunately the only time Autoglass could fit us in on Monday night was 'sometime between 11pm and 1am.' No problem, they were going to come out to us to fix it ... except then it turned out that they couldn't do that because it was too damp in the open air for a new window to stick with the heat-fixing system (or whatever. It was all very technical and I'm not up on fixing car windows, funnily enough). So it turned out that we'd have to go to them, and they were in Bolton, which turns out to be almost an hour's drive away from Garstang (the nearest town to where we are). We had a call from them around 10pm to say we could start making our way over, so we piled into the draughty car - now with a perfectly clear view through the back on account of there being no window - and drove back along the twisty, turny, and now very dark road from the cottages, and then on to Bolton. It's slightly disconcerting driving along a dual carriageway/motorway with no back windscreen, and the strange sucky sounds that whistle through the car when another vehicle overtakes. Thanks to sat nav we got to Bolton and found the Autoglass place without a problem, and were promptly greeted by a friendly guy who sat us in a warm office with a TV, remote control, and free coffee machine, while he got on with replacing the back windscreen. It wasn't how I'd planned my first evening of the holiday, and I'm sure it hadn't been in O's plan either, but given that it ended up being in the plan it was okay. And then I noticed a sign that said that after you'd had your windscreen replaced then you couldn't drive at high speed. What constitutes 'high speed'? I asked the friendly guy, explaining that not being able to drive at 'high speed' could be a problem as we had to go on the motorway to get back to where we were staying.
'Where are you staying?'
'Not far from Garstang.'
'Garstang?!' He sounded incredulous, and aghast that anyone would stay anywhere near Garstang.
He sucked in air through his teeth and tutted. 'Well, hmm ... I can let you drive up to 60 miles an hour, but definitely no faster than that.'
You know, it's actually really rather scary driving 60 mph and less on the motorway, even at 1am when there isn't a great deal of traffic on the road. Mind you, the scariness wasn't helped by an ever-thickening fog that began to engulf us as we drove back. In fact, once we were off the main road and back on the dark, narrow, twisty, turny road heading towards the cottages the fog was so thick that had it not been for the sat nav showing the existence of a road ahead I would've doubted there was one. It was a very gothic drive through the tree-lined, fog-laden country roads, and a terribly, terribly scary one given that I couldn't actually see the road more than a foot or two ahead of me. Funnily enough, driving at high speed wasn't a problem at this stage, with our maximum speed being something in the region of 15-20 mph, but we did eventually make it back, and I didn't immediately reverse into the wall and crunch the car again.

As you may imagine, Tuesday was a day of doing very little, although I thought some sustenance was required so I made flapjack, which my grandmother always called crunch, so it seemed particularly apt. I like crunch, and I like making crunch because it's so quick and easy yet scrummy. O also seems to like crunch :oD In fact I 'had' to make more crunch last night to make sure that we've had enough for today and tomorrow (and although O doesn't know this yet, I'll give her some of it to go home with too).

I'm afraid the saga of the car continues. It's all been terribly complicated. As I mentioned before, I lease my car through Motability, one of the benefits of which is that I get a new car every three years. On Sunday it'll be three years since I got my current car and you may remember my blogging back in November about getting a new one. Now then, a new car doesn't need an MOT, but once a car gets to three years old it needs its first. I was supposed to get my car's MOT done before Christmas, but on the day that it was booked in the car was snowed in so I had to cancel and re-book. I re-booked for a couple of weeks ago, but then of course I ended up in hospital in Edinburgh so once again I had to cancel the MOT. Time has been pressing on though, the MOT needs to be done, the lease on the car expires on Sunday unless it and the insurance is temporarily extended by the garage from which I'm getting the new car. I booked another MOT for this Saturday, except then I was told by Motability that if it were done at the weekend then the paperwork wouldn't go through in time for the lease/insurance to be extended, so they then decided that I'd have to get the MOT done while I was away in Lancashire. They booked the car in to a garage in Preston for today. Fine, except that the guy from Autoglass wasn't sure that the car would pass the MOT after its crunch on the wall because of the big 'dent' and the ripped off windscreen wiper (the car can't fail on a feature it doesn't have, but apparently if it does/should have a feature that doesn't work then it can fail). It has to be said that this has been causing me a considerable amount of stress, as it suddenly occurred to me that if the car failed the MOT then not only would it bugger up getting my new car, but O and I would be stuck in Preston as we wouldn't even be able to drive it back to the cottage until any work that needed doing was done, and who knows how long that might take. Now I know that God has a load of very important stuff to work on around the world, but this hasn't stopped me from praying hard about this situation over the past few days, and during most of this morning's drive to Preston I was praying the fairly basic prayer of 'Father God, pleeeeeeeeeeeeeeease, pleeeeeeeeeeeeeeease, pleeeeeeeeeeeeeeeeeeeeeease get Tommy Crotchet through his MOT. Pleeeeeeeease. Amen.' It's just as well that prayers don't have to have to fancy language, because as you see, this one really didn't have it. However, God is good, and a little after 2pm I received a call from the garage telling me that the car was ready to be picked up and everything was okay. Hurrah!

Having ventured into the centre of Preston on the bus we had to find our way back to the garage on the bus, but unhelpfully it turns out that you can't just go to the bus stop on the opposite side of the road to where you got off the bus in order to go back to where you came. Not in Preston. No. You have to go to the other side of town ... and get a different bus. We went to the tourist information centre for help, where the woman helping us went to ask a woman for help on our query, which didn't instill confidence in us. She returned with the information of which bus to get, but seemed a little unclear as to where the bus stop might be so advised us to go to the bus station, but only a short way up the road we say a stop for the bus we wanted, and sure enough within minutes there it was. We clambered on, I got out the map and followed the route, we got so close to the garage and I was feeling chuffed with myself for my clever thinking of following the map when the bus turned off into a housing estate and, upon leaving the housing estate, turned away from where we needed to go. I rang the bell for the next stop, but the next stop was ages away so we ended up having to walk quite a distance back to the garage. We eventually made it, we picked up the car, we set off on our way back to Barnacre Cottages, and the thick fog rolled right back in. The North West does a good line in fog. If you want to come somewhere and not see where you are then I recommend Lancashire in January ;oP Another gothic drive back through the twisty, turny, country lanes and we arrived back at The Piggeries, where I didn't crunch the car, but did collapse in an exhausted heap in the comfy seat with a cup of tea and piece of crunch as the stress of the day and the saga of the car melted from me. I have phoned the various people I had to phone; the lease can now be extended; the car is booked in for inspection of the repairs that need doing, and the garage doing this are going to come to my house for this; the guy at the garage from where I'm getting the new car was ever so nice and told me not to worry, that it'd all be sorted, I just need to keep them informed as to what's happening.

Now then, will somebody please remind me how one is supposed to holiday? I'm sure they're not meant to involve things like swine flu, near-death, hospital admission, crunching cars on walls, MOTs, and exhaustion. I'm going wrong somewhere, aren't I? Maybe I'll get a rest when I go home tomorrow ;oP

Sticky and slippy

Way back in the mist of time, before the first Ice Age... Oh okay then, it wasn't all that long ago, and it wasn't the Ice Age as such, it was a month or so ago, and before the first lot of very cold weather this winter, but you get the picture - it seems like ages ago, and it seems as though this snowiness and iciness has been going on forever. Anyway, what was I saying? Yeah, right, well, I made crab apple jelly! Not only that, but I used the crab apples from the crab apple tree in my front garden (aka little patch of mud). And not only that, but it's a crab apple tree that I planted myself a few years back, and it had been a scrappy little thing I'd bought from the 'almost discarded' section of the garden centre. So the process began with the picking of the apples. I took the washing up bowl out to put them in, but there was so much fruit that there was still a fair amount left on the tree even after filling the washing up bowl with the little apples! The recipe was for 4lbs of fruit. I had 13lbs!

I was surprised at how mucky my hands were after picking the fruit as I don't put anything like pesticides or fungicides on the tree, so it must all have been 'natural' dirt and probably car fumes from the traffic on the relatively major road nearby. Needless to say, I decided that the fruit needed a very thorough clean before I started following Mrs Beeton's recipe for crab apple jelly, but once it was washed (and soaped!) and as clean as could be I divided the fruit up into portions of the correct weight for the recipe, and soon saw that I was going to be doing several batches of it. So here's a pic of one batch of the fruit:


Next came the cutting of the tiny apples, and throwing them in a pan with the water and spices:


And boiling them up until they were soft:

Then straining them to get all the lovely juiciness that would (hopefully) become the jelly:

And then boiling up, and trying not to burn, those lovely juices to thicken up:

Now, unfortunately, Mrs Beeton isn't too descriptive in her instructions for when the loveliness is ready to be put into jars, and just says it's ready 'when it sets quickly on a cold plate.' That's all very well, but what is the definition of quickly? I dunno. I still don't know, but I decided 30 seconds to a minute was probably about right, so after much testing I eventually got bored and decided it was ready. I ladelled it into jars, managing to get a fair bit of stickiness on the benches and around the kitchen, and most definitely over all the jars, some of which are still sticky despite the many wiping downs they've had. And after several repetitions of the whole process this was the product of my labour:

I have to say that I was rather impressed with myself, and more than a little surprised that it had all worked out. Not only that, but when I eventually got around to tasting it I discovered it was rather lovely! It goes amazingly well with a strong cheddar cheese, and it was also quite scrummy with the completely made up lentil loaf thingumy that I made for Christmas lunch with W on 17th December (we had an early Christmas together with lunch and a trip to the panto, which was all great fun). What's more, the jelly doesn't only taste scrummy, but it doesn't dribble all over the plate - it's actually jellified! Of course there was far too much crab apple jelly for me to get through so I've been giving jars of it away, and I brought some up to Edinburgh with me where I've been having Christmas with Mum and J.

I came up to Edinburgh on Thursday. Driving. In the snow. It was quite possibly the scariest drive of my life. For any of you who know the A1 north of Newcastle, you'll know that the vast majority of it is single carriage way. It's also now in a terrible state from the freezing temperatures that have wrecked the tarmac and created huge crevasse-like potholes. It's quite something to negotiate these craters, and I'm sure that they could cause a serious accident if a wheel got caught in them at just the wrong angle. So I was trying to avoid these, but at the same time I was having to concentrate hard as I was periodically engulfed in blizzards of snow that reduced visibility considerably, but which didn't deter some maniac drivers from getting right on my tail. My strategy when this happens is always to slow down. I know this may well frustrate the driver behind me even more, but to be honest, if I'm going to be smashed into I want it to be as low an impact as possible.

Then there was the slush and ice. Various stretches of road had been cleared by snow ploughs, but certainly not all, or by any means most. I followed the tyre tracks from the traffic ahead of me as much as possible, but this didn't stop me from occasionally sliding on the slush, and on three occasions I gently skated onto the other side of the road, unable to do anything about it until my car tyres found a bit of tarmac to grip onto again. Amazingly, each time I slid that far over the raod there wasn't any on-coming traffic so avoided a head-on collision and probable death. The road was generally quite busy - the 23rd December being the busiest day of the year for road traffic, apparently - so it surely was that God was watching over me while I travelled north that meant that on each of my excursions to the wrong side of the road there was nothing coming. The whole journey really was quite terrifying and I was exhausted by the time I got here.

I made it to Edinburgh and to my parents' house, and we have been having a lovely, quiet, gentle Christmas together, with an abundance of food (including some of my crab apple jelly) and an abundance of presents. It's wonderful. Neither my mum nor my step-dad are Christians (Mum's a hybrid of agnostic-atheist, whilst J is a committed atheist), but we did all go to the Nine Lessons and Carols service at St. Mary's Episcopalian Cathedral, where they both enjoyed the music, and I enjoyed the music and the joy of the true meaning of Christmas.

I hope you have all had a lovely Christmas and a peaceful time with family and friends. Happy Christmas, all!

Take two

I'm home. I got home early evening on Monday. I'm going to try to stay at home for longer than a week this time. So far the signs are good :o) I'm tired, and I get tired easily, but that's only to be expected given how poorly I've been and that I've spent the best part of six weeks in bed in hospital. Of course, being me, I've tried to jump straight back into life, albeit at a slightly slower pace.

After my cataract surgery my glasses prescription has changed quite significantly so that my current glasses are fairly useless. They're better than nothing, I suppose, but not terribly helpful, so the first thing I wanted to upon my escape from hospital was go to the optician for a sight test and to order new glasses. I went on Tuesday. While I was there I thought I'd ask the optician why the ophthalmologist had decided to make me short sighted in the left eye but keep me long sighted in the right eye - why not try to make my vision 20/20 (6/6)? The optician didn't know and couldn't explain. In fact, she seemed a little puzzled. She seemed even more puzzled that the ophthalmologist has not only made me short sighted in my left eye, but has made my overall vision worse with the lens implants he's put in. On the upside, as I no longer have natural lenses in my eyes then my glasses prescription is unlikely to change very much over the years, unless I develop fibrosis, which apparently is very likely because of the cataract surgery, although I was reassured that this is easily rectified with laser treatment. Anyway, I digress. Having had the sight test then began the awful process of having to choose new frames. I like having new glasses, but I hate the choosing of frames, partly because when you're trying the display frames on you can hardly see what it is you're trying on as they don't have prescription lenses in (of course!); partly because there's so much choice, yet often it's a case of finding what's nice amongst what I wouldn't be seen dead in; partly because whatever I choose is going to become part of my everyday appearance for at least the next year and probably longer; and partly because I'm often not very good at decision anyway. Dispensing opticians can be helpful in the decision making process, but they don't know you, and sometimes steer you towards frames they'd wear themselves rather than what you'd wear. Take the last time I was choosing glasses: I ended up having to gently ask if there was anyone else who could help me as the woman I had was 'suggesting' frames that were pink diamante things, which anyone who knows me will tell you is just not me - I don't 'do' pink, for starters - and most likely anyone who takes a minute to glance at me could probably tell as well. Thankfully, there were no such problems on this occasion, but it can be luck of the draw. So last time it took me two whole hours to choose frames! This time only an hour and a half ;o) I went for the two for one offer so that I can get one pair with reactor light lenses for driving, and also have two completely different styles to wear. The first pair I've chosen are these (in brown, not purple), and the second pair are these (in brown/green, not black/pink). Having bought them, I've now realised that one of my friends has the second pair in the black/pink combination, so that might be a bit odd, but I've warned her and we'll just have to live with it now. R, I'm not cloning you, honest ;oP I can't wait to get my new glasses because I soooo want to be able to see properly, and it won't be until I get the glasses that I'll realise the full benefit of the cataract surgery. I'm collecting them at 11.30 on Tuesday morning. The opticians can do single vision distance lenses in an hour, but I have varifocals, which take at least a week, usually ten days. I asked them if they could priorities my prescription given how useless my current glasses are to me, and they agreed to have them done by Tuesday - exactly a week :o)

The next thing I did was to test-drive a car! I have a motability car (no adaptations though), which means that I get a new car every three years. I can hardly believe that it'll be three years in January since I got my current car, but it will be so it's time to be looking for a new one and deciding if I want to stick with the same that I've had or go for a change. I've decided to go for a change. I've enjoyed the Nissan Note that I've got at the moment, but one thing that would be useful is a bigger boot as I can't actually fit my either wheelchair in the boot of this car. I can't afford a car that's big enough to take my electric wheelchair, but at the moment, even my manual/attendant assisted is having to go in the back behind the passenger seat.

I'm the kind of person who likes to do a lot of research into all the affordable possibilities before making a decision on a substantial purchase, often checking things out with Which? or their equivalent - in this case What Car? After a fair amount of deliberation and assessment of finances I decided that I'd like to have a closer look at the Vauxhall New Meriva so I booked a test-drive. I liked it. I liked it a lot. I ended up putting an order in. I've gone for the SE model 1.4litre 120bhp in Pepper Dust, with the 'sight and light' package (automatic lights and windscreen wipers). I'm also paying extra for a spare wheel because they don't come as standard (it comes with a tyre self-inflation kit instead) and after the tyre pop I had earlier this year I'm a little wary of not having a spare wheel. Those costs add up, but it's worth it. I won't get my new car until the end of January/beginning of February as that's when the lease on my current car runs out, but when the guy at the dealership looked at the computer he saw that there weren't actually any cars already built to my specifications so one is going to be built especially for me! How cool is that?! So now I have three months to get ridiculously excited about getting a new car, and I'll probably bore you silly with excitement between now and the end of January ;o)

Right-e-o, I'd better be off as W has just arrived and my step-mum is bringing my dad round imminently so that the three of us can go to a fireworks display at Segedunum. I like fireworks and didn't get to a display last year because I was in hospital, although W and I did our own display on the town moor earlier this year, which we'd postponed from last bonfire night. We had so much fun on the moor that we're actually going to do the same thing again, probably on 8th December after we've been to 'Wind in the Willows' at Northern Stage. It should be a fun day.

The ups and downs and ins and outs

Phew, it's been a bit of time of medical things and hospital appointments lately. Last week I went back to the falls and syncope clinic at RVI for another tilt table test, but this time 'in a hoover back', as it was described to me at my previous appointment. It turned out not to be a hoover bag as such, but more of a vacuum chamber that covered my lower body and came up to somewhere around the bottom of my ribs. The test started with me lying flat for five minutes or so, with my bp and heart rate being constantly monitored, and then the bed was tilted to about 70 - 80 degrees. The vacuum was kept off for the first ten minutes, so I was just standing there (the bed has a footplate), although I felt incredibly nauseous and kept retching. The almost-upright bed was at such a height that I was towering above the nurses and the consultant and I imagined that I was going to throw up all over the tops of their heads. Thankfully I didn't, and I'm sure they're even more thankful! Although the nausea had started only a few minutes into the test, I lasted for a total of seventeen minutes, with the vacuum having been turned on after ten minutes. The last thing I remember saying was, 'I think I'm going to go.' I was right. I passed out and came around with the bed flat, the vacuum chamber removed, my legs up on a beanbag and the consultant wiggling my feet. It's bad enough fainting when I'm on my own or even when there are other people around who are just getting on with life, but it's another thing having people stand around, watching, and waiting for you to pass out. It's also not so great when those who have just seen you pass out are really pleased that you have done. The consultant was just a bit too happy about it for my liking ;oP Anyway, he said that my blood pressure 'went ridiculously low, but it was conclusive.' I asked about my BP, and was told that it had gone from 128/70 - text book normal - to 20/0 - barely a BP at all! So the conclusion is that as well as POTS, I have vasovagal syncope. Now the medication I was on for the POTS - ditiazem - has the potential to lower BP so it obviously wasn't a good idea that I stay on it, and it's been changed to ivabradine, another med really designed for angina. I've started on a very low dose, but it's planned that this will be increased in another couple of weeks time, so hopefully I'll see a bit more improvement in my heart rate then, because at the moment it's going faster than it was when I was on the diltiazem, though still slower than it was (most of the time) before any medication. So that's where I'm up to ... or down to ... with the falls and syncope clinic, and I'm due back in 11 or 12 weeks.

On Wednesday I managed to dislocate my right shoulder. I don't recommend it. It hurts. I managed to get it back in myself by holding my right wrist with my left hand and swinging my arms at a weird kind of angle. I just did what it felt like needed to be done, and thankfully it worked, though the pain of it going back in caused me to pass out, but I was expecting this as I did the same thing about 15 years ago, so I was standing next to the bed while I did this so that I had a soft landing. It was still very sore and movement was restricted, but I thought I'd see how things went. In the end though I went to A&E to get it checked out and x-rayed. I'm pleased to say that it was fully back in place and in the right place, and that there was no fracture. The nurse was about to put a sling on me, but I wondered if my shoulder was likely to better more quickly if I keep using it. The nurse that to an extent that's true, but to keep the sling because I'd probably find that I need it to rest my arm for several days at least, and it'll take about six weeks for my shoulder to heal properly :o( I did take the sling, and I'm glad that I did because my shoulder's been very painful and resting it has helped a little, although it's very inconvenient, especially as I'm right handed. Anyway, I'm using it a lot and my asthma consultant yesterday said that he'd recommend using the sling all the time for a week or so, but then start mobilising it a bit more so that it doesn't seize up. That's what I'm doing.

As I've just mentioned, yesterday I had an appointment with Dr H, and of course the main thing on my mind for this appointment was the result of any conversations he'd had with Dr G about the possibility of portacath, as I talked about here. Dr H said he'd spoken to both Dr G and Dr K - an ITU consultant who knows me very well, and that initially both were taken aback by the idea, but when they went on to discuss it further they could see the positives and all have decided that it can happen. They do all have their concerns, most importantly my MRSA positive status as the portacath obviously goes straight into the bloodstream so any infection is potentially extremely serious. There is one proviso, and that is that the port is never used in A&E, because they're not trained in using them. It can of course be used on ward 29 and also on emergency admissions at RVI as one of the nurses from the respiratory ward there (wd 52) can come, and they're as experienced as the staff on 29 because they deal with a lot of CF patients. Dr H had been going to suggest that the op be done very soon, but we're having to wait now until my shoulder is better :o( Apparently ports are usually put in the left side, but sometimes they have to go in the right if the docs can't get into the left well enough, and Dr H didn't want to get me all geared up for it only to have to postpone it because we couldn't move my arm into a suitable position. He said he'd email Dr G and let him know what the plan is, and that it'll likely happen in July/August. I'm disappointed that it's being delayed by my shoulder (though I understand and agree with the argument), but I'm 'pleased' that the portacath is going ahead ... pleased in an odd kind of way, because it's not something that one really wants to have to be pleased about.

I told you in my Head-spin post that the ophthalmologists have agreed to remove my cataracts, but that by the time my appointment had finished all the 'dates people' had gone home, because the clinic was running three hours late! I was told that I'd get a letter in the post with an appointment, but I still haven't heard anything so I phoned them up today. They still can't give me a date as I'm down to have the op done by the consultant. I don't really understand why this means they can't yet give me a date, but they did say that it's likely to be mid-June that I have the op. Although this is a couple of months wait it actually fits in quite well with other things that are going on, like my OU course that's due to finish on 27th May, and a few days away with W in the first week of June. There might even be a little bit of recovery time between the first cataract op, the portacath op, and then the second cataract op.

Off on a tangent of ins and outs... I can't drive for a few days because of my shoulder so I had to get a taxi to my appointment with Dr H yesterday. I ordered the taxi at 8:40 thinking this would give me plenty of time to get to my 9am appointment. I went to wait for it outside, sitting on the garden wall, and I waited, and I waited, and I waited some more. I was getting a little frustrated when it hadn't turned up by 8:55am and was about to phone the taxi firm to ask where the cab was when the car pulled in and flashed its lights. I got into the car, and said where I wanted to go. The driver looked at me. She looked rather scared. Then I realised that I wasn't sitting in a taxi, but in a random woman's car! 'You're not a taxi, are you?' I said. She shook her head. 'Um, okay ... I'll be getting out, then...' I mumbled in a very embarrassed hurry as I clambered out and attempted to appear unruffled. I ambled back to the wall, sat down again, and realised that the poor, now traumatised lady, had pulled in and flashed her lights to allow another car to pass. Oops.

Officially potty

I went to my appointment with the prof at the falls and syncope clinic on Friday. She'd had a chance to look at my 24 hour ECG and accompanying 'events' diary from the previous week, and she confirmed the diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). After reading the information about it on gpnotebook, where I first discovered it, I'm not surprised that POTS has been confirmed, and in fact I'd have been more surprised if the diagnosis had been something else, but I'm still not sure how I feel about it. It's good to have an answer. It's good to know the reason for what's been happening. It's good to be able to put all the pieces together. However, it's not a great diagnosis to have. POTS isn't curable, and given that I was to have something else wrong with me it would've been 'nice' if it had been something curable. At least there's hope that some of the symptoms can be treated and the prof has prescribed diltiazem to try to reduce my heart rate. She said that my heart is beating so fast at the moment that it's not working effectively, so my brain isn't getting enough blood or oxygen, which is why I'm passing out. Slowing my heart should stop the fainting. I'm hoping too that slowing my heart down to a more normal rate will mean that I might have a bit more energy again, because at the moment my body's in over-drive and I'm knacked a lot of the time. I forgot to ask how long the diltiazem would take to work, and at the moment I'm on what seems to be a relatively small dose of 120mg and my heart is still running at least around 130bpm when I'm standing. I've only taken three doses so far - Friday, Saturday and today - and I'm guessing it might take a few days or a week or so for it to kick in, but then one of my friends who's a doctor suggested that it should start to work fairly immediately so now I don't know - is the drug just not working or is it going to take a while to work?

One of the things that I was really worried about was that whatever is wrong with me was going to stop me from driving. My car is my ticket to freedom and independence, and because of my asthma it would be so life-limiting to have my driving licence revoked. This possibility wasn't something I'd initially thought of, but my mother suggested it and then at the beginning of last week she said that I may have to prepare myself for the doctor saying on Friday that I wouldn't be able to drive any more or for a period of time. It was worry about this that made me forget to ask about how long the diltiazem would take to work, and I really didn't want to ask the question about driving, but knew that I had to. Thankfully she said that I can still drive :o) I am so very, very relieved. She said that in relation to this there are a few precluding factors to driving: 1) if the dizziness I have is vertigo (it's not though - the world isn't spinning, it's the stuff inside my head that feels like it's spinning); 2) if I was fainting a lot sitting down; 3) if I didn't get any warning before fainting; or 4) if I didn't have time between warning and fainting to pull over to the side of the road. The prof said that she could see how terribly life-limiting it would be for me if I couldn't drive any more, and while of course she has to do what is right for the safety of everyone, it's a huge relief that she's said that I'm still okay to drive.

While I'm wondering how to get my head around the diagnosis of POTS it does bring together a whole variety of things for me. It seems that many of the apparently unconnected bits of me that don't work properly can probably be joined up by POTS, for instance it seems that many people with pots have a lot of common allergies, a lot of drug sensitivities and a lot of uncommon food allergies. I haven't written a great deal about my allergies here, but perhaps I'll tell you a little more about them in the near future. They're certainly complex, and I certainly have many uncommon anaphylactic food allergies as well as common allergies and allergies to meds.

Another thing that the POTS can account for is the thickening of the vitreous humour (particularly in my right eye) that has so far been accounted for by the long-term high-dose steroids I take for my asthma, even though this isn't a known side-effect of steroids. This thickening has caused the development of large black floaters in my vision that are annoying and sometimes get in the way when I'm reading. They're also a reported symptom in POTS.

Postural Orthostatic Tachycardia Syndrome is a neurological condition - a dysfunction of the autonomic nervous system (that's the part of the nervous system that controls the body's automatic functions). The digestive system is controlled by the autonomic nervous system, and the prof told me that the POTS is most likely accountable for the Irritable Bowel Syndrome that I've had for several years, and it may also explain some of the upper right abdo pain I get, although this has previously been put down to cholecystitis and ulcers caused by the prednisolone and theophylline that I take for my asthma. It could, I suppose, be a combination of all three things. Another thing that the autonomic nervous system controls is sweating, and for a long while there have been times when I've had excessive sweating. This is embarrassing and makes me very self-conscious when it happens, but apparently this too can be attributed to the POTS.

There are various other 'little' things that the POTS diagnosis pulls together (including the non-asthmatic chest-tightness I've been getting, and maybe even weight gain), and suddenly it all makes sense. How I come to have it though is perhaps something we'll never truly know the answer to. It seems there are various causes of POTS, including viral and bacterial infection (pneumonia is particularly mentioned) and Lyme Disease, which I had back in 1997 when on holiday in Canada (and I actually haven't been off the steroids for my asthma since a month or two after this). There's also the possibility that it could, in my case, be caused by some of my asthma medication, so there's uncertainty around whether my POTS is primary or secondary, and I'll probably never know for sure, but that doesn't really matter because it doesn't change what's happening or the effect of it on me. The only thing the cause of it could effect is the prognosis. While it's not curable, about 50% of people who develop it after a viral infection get some relief after two to five years, while others who develop it for some other reasons have a very poor prognosis with distinct possibility of deterioration over time. I guess I have not to get too hung up about this aspect of things though and just get on with it. The important thing now is to work out how to live alongside this new companion.

There's certainly no denying that I am now officially potty.