A comment or two

I would like to point out that all comments on my blog are moderated and that aggressive, bullying, trolling, and negative comments will not be published.  I would also like to add that I think it is particularly cowardly to post such comments anonymously.

With that in mind, I'm going to draw upon one such comment that I received today.  I haven't approved it for publication, but I thought I would flag it up to discuss some issues around it.  This particular comment accused me of 'exaggerating [my] symptoms and illness to frighten others and get sympathy.'

I find this interesting because my consultant and the hospital chaplain sometimes read my blog, as do some of my family.  If I were exaggerating I think these people in particular would have something to say about it directly to me.  They don't.  They see the life I lead and what I go through.  They experience it with me.  They see me when I can't breathe, when I'm in ITU, when I'm on a vent - either tubed or on BiPAP.  

My consultant has known me for twenty years and has seen my asthma progress from moderate to its current state during that time.  He has run out of treatment options to offer me, although he is always on the look out for trials of new drugs that I may be eligible to partake in, just as I was discussing with him on Thursday at clinic.  I should also mention that my consultant has held national positions in the treatment and management of asthma so it'd be pretty impossible to dupe him.

Clearly, the anonymous reader who left the above comment knows little to nothing about brittle asthma and has no experience of it.  If they did then they would know how severe asthma can be, and I mean chronically, not just acutely.  Chronic severe brittle asthma is not common, rather it is the extreme end of the illness, so I'm not surprised if this person hasn't met anyone else with it, and because of the extreme nature of it feels challenged by it.  But just because this person is uneducated about it doesn't take away the reality of it for me and for others out there with this extreme form of asthma.

So for the accusation of writing what I do to frighten others.  That is absolutely not the case.  I write what I do, in part, to try to educate people about what asthma can be like, because, like the person who sent the above comment, many don't understand chronic severe brittle asthma.  The more widespread thought of someone with asthma is often a child with a blue inhaler who gets a bit puffed out when they run, but is fine when they've had a go on their blue inhaler.  That is indeed what it is like for many (though adults as well as children), but there is a minority for whom it is a very different experience.

And now, what about that sympathy thing?  Again, I refute that sincerely.  I don't write for sympathy, but for the above reason, and also to kind of think out loud.  I also write to connect with others in the same or similar position as myself - those with chronic severe brittle asthma; those with other chronic health problems who face some of the same challenges; maybe even carers of both those groups.  I know that student nurses are sometimes directed to my blog by some of the qualified staff on the respiratory ward I'm admitted to frequently so that they can get an insight in to what this condition is like from the patient's perspective.  Those are the reasons I write what I do.  Sympathy - no.  It may at times be offered, but I do not want to be pitied and it is not why I write.

Interestingly, while I've been writing this another comment along similar lines has been posted, again anonymously (how lame and cowardly).  Again, the comment will not published in the comments section, but I will post a portion of it here as there are several things I would like to address in it, and some that perhaps others wonder about:

'A 3 week holiday ALONE with no carers, around the uk, which is not the most accessible place yet you managed it ALONE only 2 days after leaving hospital after 5 weeks of near-death/ITU/ appendicitis/slash every other possible disease know to man?! And that's a whole 7 years after you were apparently going blind?'

I will take this bit by bit, so firstly I'll deal with a couple of 'facts' in this that are completely wrong.  The first is that I went on a three week holiday.  No, actually it was just under two weeks.  The second is that I went on holiday on two days after leaving hospital.  Again, no, it was nine days.  The third is this 'slash every other possible disease known to man'.  Er, excuse me?  No.  Yes, there were many complications, but no.  And finally the thing about going blind.  Seven years ago I was indeed referred to an opthalmologist because I suddenly developed Holmes-Adies pupil.  This caused me a lot of problems at the time and for quite some time to come because it takes a long while for the brain to get used to ignoring the blurred vision in the affected eye.  It did actually feel as though I had lost a significant amount of sight, and many folk who know me would be able to tell you the impact it had on me for a long time.  Around this time I was also diagnosed with cataracts.  Perhaps cataracts seem like no big deal because lots of people get them and they usually do fine.  True on both counts, but actually, as they progress you do actually lose your sight, and medics let them progress to a certain point before removing them because there are potential complications.  So yes, by the time they were removed I had very little central vision particularly in my right eye, which is opposite to the eye affected by Holmes-Adies pupil.

So back to the holiday, and I'll first address the question of accessibility.  I have a powered wheelchair that I use pretty much all the time (supplied by the NHS, by the way, so I had to have a referral from my consultant and his physios before being assessed by another physio, and OT and a rehabilitation consultant.  That's just to knock on the head any possible accusation of having acquired it for any reason other than need).  I also have a car with a powered ramp at the back so that I can get the wheelchair in to it. Both of these things give me independence in getting around, so yes, I was able to drive to my holiday destination with regular stops like anyone else, and sometimes napping in the car in a service station car park.

Strange as this may seem to the individual who posted this comment, I actually do my research before I go away on holiday and I make sure that the places I'm staying are accessible.  I booked in to the disabled room of the two youth hostels in which I stayed during my holiday, do accessibility was guaranteed and I spoke with the owners of the cottage that I booked for the middle part of my holiday to make sure that was also accessible.  Whilst some areas around the places I stayed weren't particularly accessible, I (not surprisingly) didn't spend much time there or avoided them completely.  There are also websites such as Radar that give information about all sorts of accessibility issues, including holidaying and tourism, and finally almost all tourist attractions have disabled access information on their own websites or have a phone number on which they can be contacted directly for such information.  This may seem very basic to say, but obviously the person who commented has not thought of such things, or not thought that I had the nouse to find these places and this information.

So, the big question of having gone on holiday alone.  I won't pretend that it was easy or that I wasn't extremely apprehensive about it.  My mother was worried and my consultant was concerned, but they and I also knew that I needed a holiday and that I am organised enough with medications, doctors' letters, and a medical record summary to deal with a medical emergency if one should arise, even though it would have its stresses.  Thankfully the situation didn't arise this time.  Having said that, given how poorly I had recently been, I was told by both my doctors and my mother only to go if I really felt up to it, and to set out with the proviso that I was to return home if I began to feel that it was too much after all.  I knew it that aspects of it were going to be very difficult, but I also knew that because I was going on my own then I could go at my own pace, resting whenever I needed.  I did a lot of resting and a lot of sitting enjoying the view.

That takes me nicely on to the point of having gone on holiday without carers.  While I'm at home I have carers who come three times a week, and when they come they cook my meals and do my housework.  The days that they don't cook for me I either have left-overs or I have something like beans and cheese, or salad, or cheese/Marmite/humous and rice cakes/ryvita, or eggs.  Since I've started eating meat again I've found fish an easy thing for me to cook (if it's already gutted/filleted) because it takes so little preparation or cooking time.  Even with these things aren't necessarily straight-forward for me, but I kind of get by.  Left-overs - either chilled or frozen - are the best.  For the first few days of my holiday I ate left-overs that I'd had in the freezer then transferred in to a coolbag with lots of ice-packs so that they defrosted minimally on the way to my first destination.  I then put them straight in to the freezer at the youth hostel, defrosting them as I needed and reheating in the communal kitchen - such are the wonders of youth hostels!  The rest of my holiday I have to admit that I didn't eat terribly brilliantly, with baked beans and cheese or egg featuring heavily, but as it was only for a short time it was manageable.  Of course, in Dorset coast it's really easy to find wet fish shops so I had fresh fish a few times too.  Other than the fish, my diet was rather tedious at times, but as I say, that didn't matter for just a week and a bit, so yes, I was able to cope for that short period without someone else cooking my meals.

The housework also wasn't a problem.  It would be in the usual way, but as I said before, I had spoken to the owners of the cottage in Dorset before booking it, and had exchanged several emails after booking.  They knew of mobility issues before I went, and they also said that as farmers they are very used to carpets getting grubby so not to worry if my wheelchair took mud in from the farm.  While it's usual to have to clean a rented holiday property before leaving it at the end of a stay, the owners said not to worry about it - they would do it.  This was incredibly kind of them, but welcome too because it had been an aspect of the holiday that I was concerned about.

What, I hear the doubter cry, about unpacking your car?  Easy.  I didn't unpack it at the youth hostels.  I packed a separate bag of clothes for the hostels, took in what food I needed to keep cold/frozen, and had another backpack of other things that I might need.  Again, I'd been concerned about how I was going to unpack the car when I arrived at the cottage (having had a neighbour help me at home with my one heavy box of food), but I needn't have worried because the cottage owner was there to greet me and insisted on helping me unpack the car, and then repack it at the end of the week.

I should also point out that the days of having to do chores at youth hostels are long gone, and the only thing that guests have to do is make and strip their own beds with the linen provided.  The lovely receptionist at the first youth hostel saw that this might be somewhat challenging for me (and it is actually something that generally makes me very wheezy/breathless) so offered to do it for me, and I wasn't about to turn it down.  The same task in the second youth hostel wasn't done for me and was very difficult, almost to the point of being beaten by making the bed, but I did manage it eventually with a lot of breaks and time on my nebuliser.

Looking at that comment there seems to be some hidden accusation that I didn't actually spend five weeks in hospital as poorly as I was.  What can I say?  Friends and family visited me there, and saw me there, and it's in my medical records, and folk set me cards, and some sent me gifts, all of which I received because I was there to receive them.  How many times do you hear of folk who've been discharged from hospital only days after a major operation?  With that in mind, how ill do you think one has to be to spend five weeks in hospital?  If the person who commented cannot comprehend that or does not want to understand that for whatever reason, so be it, but I bet if they'd spent five weeks really poorly as I did they'd be in need of a holiday afterwards as well.

A final word to those cowardly anonymous folk who try to post comments such as those I've used as examples above, I pray for you and the bitterness in your hearts.

Thankful

There are a various things going on for me at the moment, most of which I can't discuss in this public arena.  I'm afraid I'll have to be vague and just say that it continues to be a difficult time, so to counteract this, and to lighten the mood of my blog from recent months, I'm going to spend a bit of time thinking about things for which I'm thankful.


1.  Poisonous ivy

Specifically, I'm thankful for the poisonous ivy that's growing up the side of the house opposite mine at the back.  The ivy has been there for years, and other than cheering up a drab wall has been of little note, but this year it has provided a safe place for a pair of blackbirds to nest.  I live in a built up area only a couple of miles outside of the city centre, and very few houses in my immediate neighbourhood have gardens that encourage small birds, but there has been a noticeable difference in recent years.  Maybe it's the conservation work done by 'Friends' of the park down the road, or perhaps folk have been putting bird seed/food out, but over the past few years there has been a rise in the number of small birds in the area (as opposed to pigeons and sea gulls).  We've had a lone blackbird for the past two or three summers that has sat on the chimney stacks and filled the air with beautiful song.  I love blackbird song, and this year the air is rich with it because the lone male has found a young lady blackbird and the pair have nested high in the poisonous ivy opposite.  Apparently blackbirds have two or three broods a year, and my neighbourhood pair are already on to their second.  It's wonderful.  It's not often very noisy at the back, so if you're very quiet and listen carefully, you can hear the tiny chirruping of the chicks in the nest.  As the chicks have grown, the adults - particularly the male - try to entice the youngsters from the nest with a morsel of food and a short whistle of song.  With a lot of encouragement, the fledglings dare to take their first tentative flutters from the safety of their nest and soon learn to fly with confidence.  I love watching this circle of life unfold almost in front of me, and listening to the variety of beautiful blackbird song, and every so often one or other of the adults will venture in to my yard in their hunt for food.  I'm not quite sure what it is they find on the concrete or amongst the flower pots, but they always seem to go away with something in their beak.  Yes, I'm thankful for the blackbirds, and for the poisonous ivy for giving them a safe place to nest.

2.  Friends

I have some wonderful friends who have stuck by me in both difficult times and good.  They text me, phone me, come round to my flat, take me out for an afternoon, send me cards in the post and private messages on Facebook, make me cups of tea, invite me round to their homes, make me laugh, share my tears, sit with me, go with me to the coast or the park, swap a little part of themselves for a little part of myself.  At times my trust in friendship has been challenged by folk who have presented themselves as friends, but have turned out to be far from that.  Those around me now are genuine, safe, trustworthy, and true, and to know that for certain after betrayals that have been is very precious and definitely something for which I am thankful.

3.  Sunshine

It feels like a long time since we had any prolonged sunshine up here in the north-east of the country - perhaps a couple of years - but the last week or so has been beautiful.  Today has been a fair bit cooler with temperatures back down to 16-17C, but I don't mind because the forecast is for it to warm up again tomorrow and Friday.  Sunshine lightens me.  Of course it doesn't take the stresses away, it doesn't make them smaller, it doesn't make them any easier to deal with, but it does force in a smidgen of light.  The warmth of the sun entices me outside, even if it's just to the back yard, and wraps itself around me, like a hug from God.

4.  The cat and the vet

Zach is so precious to me.  He is a wonderful cat with enormous character who seems to know when I'm upset, when I'm ill, and when I need cuddles.  He also loves to come for cuddles when I'm lying on the sofa with the computer perched on my legs and tummy; he leaps up, on to my feet, clambers around the side of the laptop, sits on my chest in front of the computer screen, and purrs in my face.  Not particularly helpful for typing or seeing any of what I'm trying to do on the laptop, but his purrs are irresistible so he more often than not gets the cuddles he's demanding.  He's got his summer coat at the moment (obviously), which seems to be a great deal thinner than his winter one, and as he's aged he's lost a fair bit of muscle mass.  He's still very fit and healthy, but he'll be sixteen later this month so he's getting to be an old man and I can feel the bones of his spine when I stroke down his back.  He spends a lot more time sleeping now than he used to, although he still has a lot of crazy running around times, and he is still fantastic company.  I love Zach so very much and I'm thankful for the love and joy that I get from him.  He hasn't often needed a vet for anything very severe (only twice in his life), but even the little things they do for him make me thankful that they are there.  I had to take him last Friday because his claws needed clipping.  They'd needed to be done for a couple of weeks, but with stresses of recent times I'm afraid that they'd been somewhat forgotten about, and then on Friday he got the two innermost claws on his front paws entwined in each other when he was clawing at his scratching post.  He couldn't get them unhooked so I had to help, which wasn't easy and he was obviously distressed about the situation.  I explained to the veterinary nurse what had happened when I took him for his claw-clipping an hour later and she had the vet take a look at him.  The poor little lad has sprained one of the toes on each of his front paws, but he's okay, and after keeping a close eye on him for the past 5 days I think he's probably healed now.  So yes, I am thankful for the vet for keeping my precious little lad healthy and checking him over for free last week.

5.  My wheelchair

When I think what I used to be able to do it almost seems unreal ... it certainly feels unfair at times.  One of my brothers and his family are going camping this summer, which is something I used to love.  The last time I went camping was in 2006 when I had an amazing holiday on my own, camping my way around the country for four and a half weeks.  It was meant to be three and half weeks, but I extended it after spending a week in hospital (including ITU) in Cornwall, not letting a little thing like the inability to breathe stop me from having the holiday I'd planned.  It was fantastic, but I suspect that I'm not very likely to camp again as there's a significant lack of electric plug sockets in a tent from which to charge a powered wheelchair.  All the same, I'm thankful for my wheelchair - Noah - because it gives me other freedoms - the freedom of independence in the outside world.  Of course, there are limitations as many buildings still aren't fully accessible, and much of the countryside isn't at all wheelchair friendly, for example, but I can go out, on my own, on the bus, in to town, to the park, along many public footpaths further afield if I go out in the car. I don't have to rely on family, friends or carers to push me in an attendant-assisted wheelchair, or on my lungs for breathing to use a manual wheelchair, or on my balance (POTS) and lungs for walking.  My independence is important to me, and I'm thankful that I have access to a means to maintain that independence as much as is possible.

6.  My mind

Okay, so depression is awful, but depression isn't all that my mind has given me.  I'm thankful that I have the mind I do, because with it I can think things through, I can reason, I can consider, I can be logical, and I can be illogical.  My mind gives me choices and the capacity to make decisions;  it allows me to challenge situations and concepts; it contributes to my creativity; it helps me to recognise emotions and identify why I feel what I do when I do.  Without my mind I would not know that there are things for which to be thankful, and I wouldn't know that I am thankful for those things.

7.  God

The ultimate 'thing' for which I am thankful is God.  Without Him I would not have my mind, my thankfulness, my being, or anything else which deserves thanks.  I thank God for God.

Review of the year 2012

I know this is a little late, but I was very busy in the immediate run-up to New Year, and I've been wiped out since.  Still, I thought that late was better than never, so here it is: the review of the year for 2012

1. What has been your biggest achievement this year?

Getting my MA. It was worth the work, but I've been exhausted much of the time, battling with various aspects of ill-health, so it was something of a miracle that I got through the MA and did so well.

2. What made you laugh most this year?

Probably a very drunken night (which is unusual for me) with W doing origami.  For some reason - probably because of the alcohol - it was hilarious.

3. What unfulfilled hopes do you have for this past year?

To finish my book about my asthma and my hospital experiences.

4. What has been your favourite/most listened to piece of music this year?

Not one piece of music, but one (or rather two) CDs.  I've mentioned the Swing Bridge Singers before, and back at the beginning of 2008 I wrote about the 20th Anniversary concert that had just taken place.  That concert was recorded, and I ordered the CDs, but it took until this June to get them!  Those CDs were the only CDs in my car for at least two months, so it's safe to say that they have been the most listened to pieces of music for me in 2012.

5. What was your best holiday this year?

I enjoyed both my holidays this year - one in June with my mum and J in Northumberland, and one in September in Norfolk with W.  They offered different things so it's hard to say which was best.

6. What new skill, if any, have you acquired this year?

Crochet, sort of.  I've learnt the basics of how to do it, and I've made a small mat, though I don't really know what it's a mat for.  However, since making that I seem to have been unable to make a square with straight edges :o/  I'll have another go.

7. What's the best book you've read this year?

For some reason I only read 12 books last year, which is a bit lax for me.  Anyway, out of those 12, the best was probably a book for teens, 'My Name is Mina' by David Almond.  Definitely worth a read, and don't at all be put off by it being a book for teens.

8. What has been the biggest challenge of this year?

As ever, my health has been the biggest challenge.  In fact so much has happened since I posted 'Something else' that I really need to update you all, but not tonight.

9. What is your happiest/fondest memory of this year?

In question 4 I talked about the Swing Bridge Singers 20th Anniversary concert.  We've just had the Jubilee concert marking 25 years - one of the reasons I've been so exhausted since I got back from Edinburgh as the concert was on 30th December.  It was absolutely fantastic, and after some very difficult times before Christmas it was definitely the happiest I've been for a long while.

10. Of what one creation of the past year are you most proud or pleased?

The second cross stitch in a series of three in a Japanese style.  I'm currently working on the third in the series.  The second one was of 'Birds in Wisteria'.

11. What new hobby did you take up/old hobby did you reinstate this year?

Singing.  It's obviously a reinstating of an old hobby, but now that we've started Flotsam I'm singing in a structured way again, i.e. in a choir, and I'm loving it.

12. What one thing would you really like to do next year?

I would really like to finish both my current books and at least start along the track of getting them published.  However, at the moment I have an horrific problem - the memory stick on which  both my books are saved suddenly seems to have become corrupted!  I am having a slight meltdown about this, and I'm hoping beyond all hope that it can be saved.  Thankfully I have most of the important stuff on it printed out, but the thought of retyping all that work before I can continue on with it fills me with dread.

13. What was the saddest thing of this year?

Seeing someone I love disappearing in to dementia.  It's terrible, and there's been a rapid decline in the last twelve months.

14. What has been your best discovery of this year?

That it seems that I might, possibly, maybe, actually be able to write for children.  I mean, write in a child-friendly way with stories that they like.  Writing for children was excluded from either of the creative writing modules in my undergraduate degree, although it was something I always wanted to do.  It's been great to have the opportunity to try it in my MA and find that I seem to be okay at it.

15. What news story of this year has had the biggest impact on you/do you most remember?

The one that had the biggest emotional impact on me was probably the recent shootings in Conneticut.  They were so tragic, so terrible, so needless, so devastating.

16. What's the best film you've seen this year?

I've hardly been to the cinema at all this year.  Three times in all, I think.  One of those films was 'The Artist', which was masterful!

17. What was your best buy this year?

I would say my car, but as it's a Motability car then I haven't really bought it.  All the same, that will be my answer.  It's fantastic to have a car in which I can get my electric wheelchair - it's given me back my freedom.  I've already done more miles in it since the end of June, than I did in sixteen months of having my previous car simply because I can get my wheelchair in to it and be completely independent again.

18. What has been your best day out this year?

Most likely the Friday towards the end of August when I first went to County Durham to see my older Godson the day before his birthday, and then I went up to Beamish Museum for the Paralympic Flame Event.  I didn't get to carry the flame, but as I'd been nominated to do so I got a VIP ticket to attend, and I had a fabulous time.

19. If there’s one thing you did this year that you’d do differently if you could, what would it be?

A difficult situation that I didn't deal with as well as I would have liked.

20. Is there anywhere you'd like to visit next year?

I would like to venture to the south coast again.  I think I said that last year, actually, and I didn't quite make it that far, but yes, I'd like to go somewhere along the south coast that I haven't been to in previous travels.  I may even take a holiday on my own down that way.

21. Name one thing you did this year that you'd like to do again?

Hmmm, it's been a strange old year so it's a difficult question... There's a place just a little way out of Edinburgh that I went to with Mum and J when I was up there a little while back.  I think it's called Flotterston, though I'm not too sure.  Anyway, I'd like to go back there.  It was beautiful.

22. Who gave you the best advice this year?

My GP.  She told me to keep living my life, even if I have to do it differently from how I would have hoped.

23. What new skill would you like to acquire next year?

The skill of finding an agent and a publisher ;o)

24. What was your favourite TV/radio programme this year?

My favourite TV programme was, once again, Miranda.  I love it.  It's hilarious and is guaranteed to make me laugh whatever mood I'm in.  Radio?  I don't think there's one specific programme, but I've really enjoyed some of the Radio 4 Afternoon Dramas this year.

25. What would you like to make more time for next year?

Writing.  I mean writing in a more self-structured way.  I don't have the discipline of university now, so I have to find a way to do this myself.  Ironically, I think that part of making sure I get down to the writing will entail me getting busier with some other things.  That way I'll be able to have a more structured life, and will have definite times when I know I can't write, so I will have to make time specifically for writing.

26. What has been the biggest disappointment this year?

Probably not managing to get to the 'meet' in Liverpool with a group of my OU friends.  On the morning that I was supposed to be setting off - the day before the meet - I woke up with terrible gastroenteritis and a sky-high temperature.  The actually day of the meet was when I ended up in hospital with anaphylaxis after taking rehydration salts.  I still don't know what it was in them that caused the reaction.  Anyway, I was extremely disappointed not to get to the meet as I'd been looking forward to it for a long while, and they are great friends.

27. What was the best or most enjoyable concert you went to this year?

I've had several concerts booked to go to, but haven't got to any of them because I've ended up in hospital each time instead.  I suppose then, that rather than it being a concert for which I was going to be in the audience, I will have to say that the most enjoyable concert I went to this year was the Swing Bridge Singers Jubilee concert on 30th December.  Brilliant!

28. What do you think was the best thing that you did for yourself during the last year?

Start seeing a psychologist again.  It's hard work - therapy always is - but it's worth it.  My health is crap and it gives me a lot to contend with.  It was getting on top of me and I'd hardly realised quite how much it was wearing me down.  Although I had to wait a long time between the referral, the initial assessment, and eventually starting session, it was actually fortuitous that I started them at a time when there have been so many new diagnoses possibilities flying around (I really must give an update about all of that) and a time of flux for other reasons.

29. What is the biggest difference in yourself from this time last year?

I think the biggest difference is that I'm not feeling very settled.  This time last year I knew where I was up to, what I was doing, where I was aiming for, what my goals were, and I had a structure to do all that.  Now there are so many uncertainties and no structure at all.

30. What are you most looking forward to about next year?

Writing and living.  I had an experience at the end of 2011 that made me doubt that I would be alive at the end of 2012 (I don't really want to say anything more about that for now), so yes, living and being a part of 2013 is my answer, and writing is a part of that.

So what about all of you?  Tell me your answers to some of these questions, even though it's a little late as a review of 2012.  I'd like to learn a little more about some of you.

Happy Christmas

This comes to you just minutes too late for Christmas day, but I hope you all had a very happy Christmas, and that you enjoy the rest of the festive season too.  I'm up in Edinburgh again, staying with Mum and J.  We've had a gentle day with lots of food, lots of presents, lots of telly, lots of turkey (my first turkey for 20 years!), a brief walk/trundle this evening, and a smidgen of alcohol.  Actually, the only alcohol I've had has been in the pudding that mum made, and which contained rather a lot of delicious Bailey's - mmmmmmm.  It's been a lovely day, and I feel very blessed to have had the Christmas I have.

I am aware that I need to do a proper update very soon, and that (yet again) it is far too long since I last posted, but rather a lot has been going on, and I've been exhausted.  One of the lovely things about coming up to stay with Mum and J is that I've been able to rest and get some much-needed sleep.  I'm away from all the stress and difficulties at home, and for a week or so I am free of hospital appointments.  Having said that, there's some question as to whether or not I may need to venture up to the Edinburgh Royal Infirmary at some point as I seem to have hurt my foot by running over it in my wheelchair.  I think I am possibly the only person who could mow themselves down in their own wheelchair whilst sitting in it, but I did.

I went to the local church last night for the Christmas Eve midnight service, at 11.30 ... Mum had been going to go with me, but in the end she was too tired so I went on my own.  It's a beautiful little church and I was made to feel very welcome.  The service was lovely, the address was short (which is what you want at a late night service, in my opinion), the carols were great, the organ/organist was stunningly fantastic.  I trundled back to the house in the freezing temperatures feeling warm on the inside.  I got to the front door with the ramp still resting in its place on the top step, but I thought that the door had perhaps knocked it forwards a little.  To make sure that it was going to be safe for me to go up, and to ensure there were no accidents (little did I know!), I thought it would be wise to push the ramp just a little further on to the step.  I took my feet off the footplates and put them on the ground behind so that I could more easily reach the bottom of the ramp and I bent forwards.  As I bent forwards my coat caught the joystick control of my wheelchair, thus sending it shooting forwards.  My feet, being on firm ground, stayed where they were, and the forward-moving chair propelled the rest of me straight ahead, and then straight down as my bum left the chair.  My coat eventually disentangled itself from the joystick control and the chair came to a halt, but by that time I was sprawled flat on my tummy, head-first up the ramp with the wheelchair on top of me.  I lay there for a moment thinking, 'Ow!' and then imagined myself spending the night outside in that position, knowing that Mum and J would have gone to bed.

Staying like that wasn't really ever an option, partly because it was so cold, and partly because bits of me were in rather odd and painful positions, not least my feet that were basically folded in half at the base of my toes, and weirdly angled in the middle.  I somehow got half way on to my knees, lifted my bum in the air, and twizzled my right arm behind me so that I could feel the joystick, which I then managed to knock backwards a little.  The wheelchair clunked as it fell off the backs of my legs, and I was able to get more fully on to my knees, although the bottom of my legs and feet were still underneath the chair, and kind of trapped by the footplates.  But once I got on to my knees I could twist round to see what I was doing with the joystick controls and was able to manoeuvre the chair backwards.  At last I got my feet out, sore as they were, and was able to scramble back in to the chair.  A good look around told me that, thanks to the long garden path and the fact that it was 12.30 am, nobody had witnessed my late night sprawl and clatter on the ramp, but a glance at the ramp also told me that it had indeed slipped a little way off the front door step.  I then did what I ought to have done in the first place: I turned off the power on the chair before leaning forward and pushing the ramp back in to position.  Only when I was safely sitting upright again did I turn the power on again, trundle up the ramp and go inside the house.

I'd only had one Bailey's and that had been several hours previously before dinner.  I can tell you don't believe me, but it's true!

So yes, I have a sore foot, which may need looking at, but I'm hoping it'll sort itself out in the next day or two.

Anyway, happy Christmas, everyone!

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.

Time out

I'm still up in Edinburgh till tomorrow evening, but I've had a lovely break while I've been here.  I did a great deal of not very much over Easter weekend, except for a couple of trundles round the pond in the nearby park, and a slightly longer venture into the park and surrounding area last Sunday.  It's great to be able to go for a trundle and enjoy some time in the park with Mum and J, because there have been so many times over recent years when my lungs and the POTS have meant that I just haven't been up to it.  Taz makes it possible, so whilst it's not great that I need to use the wheelchair, it's great that I've got it and that it enables me to make the most of life.

Mum and J live in a lovely part of Edinburgh, and although it's only a couple of miles outside the city centre, it's very leafy and the local park is lovely.  They have a sizeable garden at the front of the house (not massive, but big enough to be called sizeable), and Mum likes to leave food out for all the little birds.  But while I've been here it hasn't just been the blackbirds, robins, wood pigeons, etc that have been visiting the garden, but also a tawny owl.  I've heard it in the area most nights, hooting its hooo-hooo-hoooooo, and its occasional ke-wick, sometimes in the distance, but often much closer.  At about 2.30am one night I was lying in bed unable to sleep when I heard it very close by, so I got up to peer out of the window and see if I could see it.  Sure enough, it was sitting in the copper birch tree just outside my bedroom at the end of the garden.  At first I wasn't sure if what I was seeing was the owl, but it was soon confirmed when it started to hoot and everytime it did it tossed its head up, as if it was saying, 'I'm a very proud owl.  Listen to what I have to say.'  Then it would ruffle its tail feathers before doing the whole thing again.  I watched it for several minutes before climbing back into bed, but the owl stayed where it was and hooted into the night.  I fell asleep soon after getting back into bed, nicely relaxed, smiling, and marvelling at the beauty of nature.

I think that was possibly on Tuesday, and that I hadn't been able to sleep because it'd been a rather mixed day.  It had been the funeral of my friend J in afternoon, but of course I hadn't been able to go to the funeral because of being up here.  I'd had some quiet time in the afternoon thinking about her and praying for her and her family and I'd felt a bit pensive and sad.  I'd also been concerned about my friend R who was having an operation in Newcastle that day, so I was very mindful of her and had been wondering how things had gone.  Thankfully all seems to have gone as well as could be expected, and while she's in some pain, she seems to be mending and is hoping to get home soon.

After a day of contemplation and thinking about my friends, in the evening Mum, J and I had gone to the theatre to see South Pacific.  It was great fun.  I've seen it once before many years ago in Newcastle, and this production possibly wasn't quite as vibrant as that one had been, but it was still well worth seeing, and some of the actors had fantastic singing voices.  The actress who played the part of Bloody Mary was particularly good and Mum and I both came home with Bloody Mary's song 'Bali Hai' (or however it's spelled) going round in our heads.  Actually, we still both keep breaking out into song with that one every so often.  Either that or 'I'm Going to Wash That Man Right Out of my Hair', which I don't think pleases J too much ;oP  (not that he has anything to worry about.  Mum and J were curled up on the sofa together yesterday evening, and next year they celebrate 20 years of marriage).

So I pretty sure that it was Wednesday afternoon that we got the bus all the way across town to the Scottish National Gallery of Modern Art to see the Edvard Munch exhibition.  If any of you are up in Edinburgh between now and the middle of September, and you like modern art, then this exhibition is definitely worth seeing.  It doesn't have many (if any) of Munch's paintings, but instead is largely comprised of his lithographs and woodblock prints, although a number of these were subjects that he also painted.  One of these - 'Meloncholy' - is a painting that I examined and commented on as part of the last End of Course of Assessment for the last module of my undergraduate degree, so I was particularly interested in seeing the woodblock print of this.  As the title suggests, it's not a cheery picture, but then Munch wasn't a cheery fellow, having lost both his parents when he was young and a beloved older sister not long after that.  Many of the pictures reflect a deep sadness, almost a depression, and certainly a mourning for those he loved who had died, but there is the occasional relief too when looking round the exhibition.  Yes, definitely worth seeing if you get the chance.

I had a quiet day on Thursday, and have spent many peaceful hours on this trip north sitting doing cross-stitch.  I'm working on one called 'Birds on Wisteria'

This image is taken from the website from where I bought the kit, rather than being the finished product of my work.  I haven't actually finished it yet, although I have done a huge amount while I've been here and don't suppose it'll be all that long until I do finish it.  I love cross-stitch.  It's so relaxing, totally absorbing, and very satisfying.  It hasn't been easy doing all the sewing I have with my hand still mending after last month's surgery, but as I'm mostly just holding the material and hoop with my left hand it's not too bad, although the scar is quite painful so I hope I'm not doing it any harm.  Anyway, I've been enjoying doing the cross-stitch, and pretty much the only thing I did on Thursday was go into town on the bus to get some more of one colour of thread for the cross-stitch as I'd made a major mistake and had had to unpick about eight hours worth of work!  This had been extremely annoying, but more than that, it had meant that I didn't have enough of that colour to finish the piece.  Thankfully I was able to find the right colour in town, so came back after that little adventure and set back to sewing.

I didn't actually do a huge amount of cross-stitch that evening as we had my friend O and her husband A round for dinner, which was lovely.  I met O through the Open University after we'd both studied the creative writing module A215.  O is fab, and I love spending time with her so it was great that she and A came round on Thursday evening, and so very kind of my mum to cook a fabulous meal for us all.  It was a very lovely evening with great food and lots of interesting and varied conversation.

I saw O again on Friday as we'd booked in for a salty experience at The Salt Cave.  We went there together last summer, and while I don't know if its claims of being a successful treatment for lots of different medical conditions (including asthma) are true, it is certainly a very relaxing experience.  It also hasn't done me any harm, and to be fair, my nose has felt really clear after both times that I've been.  This time, O and I were the only people booked in for the four o'clock session so we had the place to ourselves.  Not long after we'd made ourselves comfortable, the lights were dimmed, the salty air machine (or whatever it is) was put on, and gentle music that combined the sound of waves lapping up onto a shore was played into the room.  We both fell asleep.  We also both came out rather salty, with a thin covering of white salt having to be dusted off the front of our clothes before we left the room, and my lips were still salty when I got home.

So then there was Saturday and Mum, J and I walked/trundled off through The Meadows in the afternoon for a relatively short visit to The National Museum of Scotland.  I hadn't known before I went there this time that they have a few pieces of Benin art, but when I read this on the back of the floorplan we were given as we went in I was particularly interested in seeing them as I'd studied some Benin art history in the last module for undergraduate degree.  Mum and J have obviously been to the museum several times, but apparently they haven't yet managed to get beyond the first or second floor.  The pieces of Benin art are on the fifth floor, so they hadn't seen these and were all up for rectifying this when I told them what I know about the history of them.  There's only one display case with Benin art in it, but it's amazing stuff, and the rest of the stuff in that room is fantastic too.  We took a slow wander around the displays in that room and the adjoining one, then went for a mooch around the museum shop before walking/trundling home again.  It was good to take our time over a small section of the museum and to come away feeling as though we'd had some focus on what we'd seen.  None of us felt overloaded with information or overwhelmed by too many artifacts, and it was such a pleasant day - crisp, but bright and not too chilly - that the walk/trundle either way had topped it off.

Finally, Saturday evening saw us going to the cinema to see 'The Artist'.  Mum and J had seen it before, but both quite wanted to see it again, and as I hadn't seen it I was up for it, especially after all the excellent reviews I've heard about it.  Oh, and of course it won all those Oscars too.  It's a great film!  I reckon Mum's right when she says that she thinks it'll become a classic.  It almost seems as though it already is, or ought to be, because its a silent film in black and white.

It's ages since I've been to the cinema, probably a year or maybe even longer.  I've wanted to go to things, but just when I've started to make plans to go I've got ill and ended up in hospital so I think the last thing I saw at the cinema was the final Harry Potter film.  It was either that or 'The King's Speech', whichever of those was the most recent.  Anyway, I got to 'The Artist' tonight/last night, and it was fab.  Mum and J go to a little independent cinema called The Dominion, for which they have Gold Membership.  This basically means that they pay an annual subscription and then get reduced tickets to all the films they go to through the year, and they also get extra comfy seats.  When I say 'extra comfy' you need to be thinking of reclining leather seats with foot rests, so it's like lying on a sofa.  Oh, and they get free drinks and crisps too with their membership.  It's brilliant.  I've been a few times with them and I love it every time I go.

So that's been my stay up north in Edinburgh.  Back home tomorrow evening/this evening (Sunday) and back to university next week, but hopefully I'll be going back feeling more refreshed than I have for a while.  My lungs are a little iffy, but they're manageable, and maybe the TLC and the time out that I've had over the past ten days will have built up my resilience a little.

Here's hoping for an easy journey home.

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.