A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Thursday, 28 June 2012


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.

Tuesday, 19 June 2012


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.

Sunday, 3 June 2012

In hand

Slowly, ever so slowly, I'm getting through my work.  I have now submitted two of the pieces of work for my MA and only have 1000 words left to do of the third submission.  Of course, I then have 15000 words of portfolio/dissertation to write, but that's not due in until the end of August so there's plenty of time left to worry about that get that done ;oP

Things have been somewhat slowed by a complication arising from the carpal tunnel surgery I had in March.  One side of my hand has swollen, is incredibly tender, and is causing horrible pain in two of my fingers and some of my arm.  I've been seeing the physio at the hospital for several weeks because I've had reduced mobility at my wrist, and hypersensitivity at the site of the scar, so when things got a whole lot worse at the beginning of last week I called the physio department for advice.  The physio told me to see my GP that day and also made an emergency appointment to see her the following day.  Amazingly, I actually managed to get an appointment with the GP - amazing because it was almost midday when I rang and usually all appointments have been taken ten minutes after the phone lines open at 8.30am.  So I got to see the GP, but it was a trainee, who was very nice, but didn't have much idea what the problem was or what to suggest, other than increasing my diuretics to try to reduce the swelling.

I saw the physio the following day - Wednesday.  She also didn't know why my hand has swollen, but she thought the swelling was causing compression of the ulna nerve.  Rather than seeing me in the rehab department where she usually sees me, she had told me to see her in the hand clinic in case she thought I should see a doctor.  She did, and she grabbed one (I presume not literally, but I didn't follow her into the corridor to see), and the doc agreed with the physio's diagnosis as there was no evidence of infection.  They decided that my appointment with the surgeon should probably be brought forward, and that came through the post two days later for 19th June.  They also decided that for now I ought to use my hand as little as possible (easily done, because it's far too painful to use much anyway), have it elevated in a sling, and have some nerve-specific pain killers.

The hospital doctor had two pain killers in mind, gabapentin and amyltriptyline, but didn't have time to check through all the ingredients to see if either contain anything I'm allergic to, so instead said I should contact my GP.  I phoned the GP as soon as I got home, explained the situation to the receptionist I spoke to, giving the name and contact number of the physio in case the doctor wanted to speak to them.  Anyway, after the doc had finished surgery she called me back, but hadn't been able to speak to the physio so I explained it all again to her.  She was lovely (as ever), and checked both drugs for potential allergens.  As it turns out, I can't have amyltriptyline because it's in the same classification as a medication that I had an anaphylactic to several years ago.  However, gabapentin seemed okay so she prescribed that and faxed it over to the pharmacy for me to collect as the surgery was about to close.

Gabapentin does seem to work, but it also makes me feel very nauseous, so I'm trying to cope with the pain  some of the time.  I say this very tentatively, but I think it might be a little bit better anyway, and I think the swelling might have gone down a bit too.  I hope so because the doctor at the hospital said that nerve compression can cause long-lasting muscle weakness, which itself can cause the hand to wither and permanent loss of function.  There are some things you just don't need to hear!

I have to go back to the physio on Wednesday morning so we'll see what she thinks then.  I'm hoping that I will at least be able to take the sling off when I've seen her.  It makes life tricky, and isn't helping me get my work done.

Okey dokey, I'm off to bed now, but hopefully I'll have got the last of my MA coursework out of the way in the next few days and will be able to tell you all so when I next blog, which I promise will be a lot sooner than the time between this post and the previous one.