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

Today is the tomorrow that you worried about yesterday.

Monday, 27 August 2012

Reconnecting

It's been a very long time since I last blogged, for which I apologise, but I've needed the break.  It's been a very mixed time with a lot going on.  First of all, two friends died, one was someone I knew from years ago, and had somewhat lost contact with her, but I was still very saddened by her death.  The other was someone  I knew from a private online group, but nonetheless had got to know well and respected.  Very sadly, she killed herself.  It was only 15 months since my younger step-brother had killed himself, although in very different circumstances, but a lot of emotion was stirred up.  However, I kind of had to suppress all of that because I had too much work to do, and I knew if I allowed the feelings to surface then I wouldn't be able to concentrate on my writing.

My MA portfolio/dissertation is due in next Friday - 31st August - but by some miracle I actually managed to get it finished and handed it nine days early!  I used the opportunity of my portfolio/dissertation to write some more of my book about my experiences with asthma - the very serious alongside the light-hearted.  I'm now about half way through with 30,000 words done.  I enjoy writing it, and I hope that others will enjoy reading it, and get something out of reading it too, but writing it also stirs a lot of emotions.  It's quite emotionally draining really, writing about all those life-threatening situations, or even just some of the more humorous times in hospital - they've all occurred after/during times of severe illness.  Cathartic as it is, writing about it is also hard work.  So yes, I'm pleased that I can have a bit a break from the intensity of it, and enjoy the rest of life.

It's a bit strange thinking that I've finished my MA.  It's good, but it's odd.  I've been studying continuously, either for my undergraduate degree or for my MA since October 2006.  What do I do now?  Of course, the answer is that I allow myself a bit of holiday and then get back to the writing, but it'll be different with only my own deadlines to adhere to.  I might do the occasional short course at Newcastle University.  Some of the shorter post graduate creative writing modules are open to the public, so that would be a good way to keep in touch with the department and some of the people.  I haven't ruled out the idea of doing a PhD, but I decided that I didn't want to go straight on to that.  I think I'd like to take the time to write the rest of my book, and then some children's stories about Zachariah Zebedee, and during that time I might work out what   I might like to do a PhD on.  Creative writing PhDs tend to consist of writing a book, and also the research you put in to the writing of the book.  My current book doesn't really lend itself to that, what with the research for it being me living my life ;o)

The other thing that's been going on for me is an on-going problem with my mouth.  My tongue has been very painful for months - since February.  I went to GP several times and was treated with anti-fungal antibiotics for oral thrush, but with no effect.  After the more powerful anti-fungal antibiotics proved ineffective a swab was taken and it turned out that there was no oral thrush or any other fungal infection present.  The GP then thought that it might be a kind of oral eczema that can be pre-cancerous/cancerous, as I'd developed some very painful lesions on the sides of my tongue.  He referred me to an oral surgeon.  I've been up to the hospital twice for that now, the first time seeing the registrar, the second time the consultant.  Thankfully it turns out not to be a cancerous problem, but I've had that worry hanging over me.  So instead of what my GP thought I might have, it appears that I have a combination of two problems: Fissured Tongue and Burning Tongue Syndrome.  Because of my complex medical history and allergies to lots of things, including some medications, then they're going to start treatment conservatively with a mouth guard to wear on my bottom teeth at night and in the evenings (and as much as possible) :o( I think the point of this is try to give my tongue a rest from resting against my teeth, which may be aggravating the situation.  Hopefully that'll work, but I have to go back to see the surgeon again in three months time to see how things are going.  I have to say that it's been quite a worry, although I didn't realise quite how much I was worrying about it until I got the all-clear last Thursday.

That's probably enough of an update for now, but hopefully, now that lots of things are settling, I should be back with you much more regularly.

Thursday, 26 July 2012

Keeping in touch

I'm sorry - yet again - for not updating more frequently.  Having a mixed time at the moment - some very good, and some not so great.  This is possibly the shortest post ever just to say that I'm still here and I'll post properly soon.  I was going to update this evening, but then I got some sad news and now I don't feel like updating tonight.  I'll get back to you very soon.  I might even have some photos to post up.

Monday, 16 July 2012

Decision made

It's a while since I posted because I've been busy with writing things for my MA portfolio/dissertation, but it didn't take me long after my last post to make my final decision about whether or not to give up being a vegetarian.  As I said in that post, I had been thinking about it for a long time, although I hadn't told anyone.  I have made the decision to break my twenty year meat fast, and have surprised many with my decision.  I thought my mum wouldn't be quite so surprised because I'd talked a little about it with her while we were away together, but she really was.  She still is.  My brother, M, has been surprised but more supportive than I could have imagined.

There were many reasons I came to the decision I have, some of which I talked about in my previous post, some of which I touched on.  I'm not going to go through them again, but I do think I've come to the right decision for me at this time.  It still surprises me when I look in the mirror and I suddenly think, 'Hey, you're not vegetarian any more,' because it's been part of my identity for twenty years - all of my adult life.  The rest of the time it's felt like a new adventure.

I have no idea how to cook meat so I've been buying cook books from here, there, and everywhere.  Having said that, the fishmonger has been really helpful the couple of times I've been there, and the butcher at the farm shop was also helpful, if a little perplexed (even though I had explained it to him).

Once I'd made my decision to eat meat again I thought it would be a good idea to see if I could get an appointment with the dietician at the immunology department.  It took several days to get to speak to her on the phone, but she was very helpful and is very happy to see me face-to-face, although it means getting a re-referral from my GP as it's over a year since I was seen in the immunology department.  The referral is now going through, but in the meantime the dietician said that one of the main pieces of advice is that as a general rule I should never eat meat bought from a supermarket because of the added colourings and preservatives.  I also can't have any cured meat (unless I cure it myself).  I did in fact speak to the butcher at one of the big supermarkets nearby.  I won't name the supermarket chain, but the butcher did tell me that they do dye a lot of their meats.  Even the organic meats, which arrive at the shop unadulterated, but then the supermarket themselves add the dye.  They can still sell the meat as organic, because that is how it has been reared and prepared, up until the point of arrival in the shop.  I don't know about you, but I think that's diabolical.

Before I became vegetarian I never enjoyed holding raw meat, but I've done a lot of reading in recent times, and one of the books I've read is Hugh Fearnley-Whittingstall's 'Meat' book.  In it he talks a lot about the ethics of eating meat, and says that if an animal dies for us to eat then we have a responsibility to treat it with the respect that it deserves (it says a lot of other things too and is worth reading).  I've born this in mind when  I've been handling fish and chicken - the only two meats I've eaten so far - and haven't had that thought of 'Eurgh, this is disgusting,' that I used to have.  It is, after all, still just the animal that was walking around in the field, or swimming in the sea/river, before and that I respected.  I'm going to be trying lamb tomorrow, and I'm hoping that I'll feel the same way with that too.  I can't see any reason why I wouldn't.

It's taking a bit of getting used to having meat in my mouth again.  It's the texture, not the taste, and the weird feeling of having my teeth kind of stuck together by the food that I'm eating.  But so far as the taste is concerned, I've liked it.  So far I've had trout, salmon, sole, and chicken, but I'm very much still learning how to cook any of it, although the advice I've had from the fishmonger and farm shop butcher has been spot on.

I think this is going to be an interesting journey.  It may not always be entirely comfortable, but that'll be for me to consider along the way.  At the moment I think I've made the right decision for me, not least because I've just been diagnosed as anaemic again.  I'm sick of taking endless tablets, and whilst there's not a lot I can do about taking almost all of them, I can try to help myself with my iron levels, and maybe not have to rely on iron tablets for too long.

Tuesday, 3 July 2012

Controversial

I'm the sort of person who usually thinks about big decisions a lot before 'making them public', which means that such decisions can appear to others to come out of the blue.  This happened when I set up my business, '9 Lives Craft Designs.'  I thought about it a great deal and looked into the practicalities and financial implications on my own before telling others my plans.  When I did then tell people they were somewhat surprised the next time they came around and my flat was covered in handmade cards and craft materials all over the place.

I'm thinking about something 'big' now.  Something that will greatly surprise those who know me well and have known me a long time ... I'm thinking ... Hmmm, am I ready to disclose this? ... I guess I must be in some respects as I've started writing this post ... ... ... I'm thinking of giving up vegetarianism.  There, I've said it.

I haven't yet made my final decision, and it is a major decision because I have been a lacto-ovo vegetarian (a vegetarian who drinks milk and eats eggs) for twenty years.  There were a number of reasons I decided to become vegetarian all that time ago: firstly, there were the ethics of eating meat, manufacturing animals, and slaughtering animals; and then there was the fact that I was in the midst of an eating disorder, and any reason not to eat something was helpful in maintaining that disorder 'legitimately'.  There were other reasons too, but these are probably the two that are most influential in this time of reconsideration.

I have battled with my weight for years, but during my late teens and twenties I fought with both anorexia and bulimia.  I have overcome these, but I have soared into the obese range, and I don't just mean this as a subjective thing from my perspective.  As I've said, my decision to become vegetarian was also based upon my ethics, but it was also influenced by my fear of food at the time.  Yes, I still battle with food, but I wonder if it might make a difference if I tried giving up this last restriction I imposed upon myself, although I have to say that it hasn't felt like an imposition.

As for the ethical thing, that's more difficult.  I still have big uncertainties about the meat industry, and should I decide to become omnivorous again I would avoid mass-produced meat.  Mind you, I wouldn't be able to eat most of the mass-produced stuff anyway because of allergies.  Most supermarket meat is injected with red food colouring to make it appear bloodier and therefore fresher, and some are also covered in preservatives.  Both colourings and most preservatives instigate anaphylaxis in me.

That said, health is one of the things that's been making me think about giving up vegetarianism.  My diet is so restricted because of my allergies, and although I've managed well since all the allergies were eventually diagnosed seven years ago, I depend on dairy products and eggs a great deal as sources of protein.  In recent years I have also been prone to anaemia, which is exhausting and doesn't at all help the POTS, or my health in general.  Yes, I have beans and pulses regularly, but I'm still lacking in protein and iron.

I know that some vegetarians who return to an omnivorous diet eat only fish.  Some still continue to call themselves vegetarian even though they eat fish.  I don't hold with that view - that you are vegetarian if you eat fish, because it's still a body.  I wonder what the ethics are behind only eating fish... I'm not convinced that eating fish is any different from eating any other animal, and I think that if I decide to give up vegetarianism then I will not differentiate between fish and meat.

I was in the supermarket today, and whilst I wouldn't be able to eat supermarket meat, as previously mentioned, I did make myself wander down the meat aisle.  I'm not sure how I felt.

Contemplating this change in lifestyle feels very controversial ... mainly within myself, but maybe too with those who've known me for a long time.

I haven't yet made the decision, but I know which way I'm veering.

Thursday, 28 June 2012

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.

Tuesday, 19 June 2012

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.

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.