>Changing my meds

>Mostly for my own records because otherwise I won’t remember when this happened and it might be useful at some point in the future.

Went to the Dr today.  I was very nervous about going to talk depression for some reason and threw up before I left. Not that unusual when I’m anxious but not nice. At all.  It wasn’t my usual GP but a different one (who I asked to see as my GP was unavailable and I’d seen him recently and knew he was easy to talk to and also good).  The different in perspective and opinion on my meds was interesting

Baclofen increased to 40mg a day (well, script was for between 20 and 40mg a day depending on what I think I need, have mostly been taking 30 but Dr says up it to 40 permanently).  I think I’m now on 3 for 3 for Drs appt when “increased spasticity” has been noted down. Possibly 4 for 4 if we count the out of hours GP I saw on Sunday who commented on my spasticity levels. Regardless of the actual number, I hope my next visit will have “slightly reduced spasticity” on my notes.  Or at least, here’s hoping.

Fluoxetine stopped.  He was going to increase it as he said the dose I was on was too little for someone with chronic depression let alone with my current problems.  But then I told him about the “fluoxetine increases my spasticity” theory and he immediately said “change it”.  That’s why my baclofen hasn’t been properly increased as the hope is the lack of fluoxetine will improve my spasticity too and is the difference in opinion I was mentioning. My regular GP had been of the opinion that all antidepressants (well, I assume she meant SSRIs) would probably have the same affect and I get too much out of it to consider changing.  So my prozac princess days are over. No med taper needed which surprises me.  For some stupid reason it feels weird and as if I should take a ceremonial “last fluoxetine”.

Sertraline added.  New antidepressant.  100 mg a day which is the “middle dose”.  That’s meant to be quite a “clean” drug with few side effects.  However the leaflet lists “depression” as a common side effect which has been making me laugh all day.  We shall see.

As I eluded to above I was at the out of hours GP on Sunday.  I was absolutely convinced I had a UTI having woken up with symptoms and a bad pain in my back over my kidney.  The dipstick didn’t show enough leukocytes apparently to be a definite UTI but that could have been because of how much I’d drunk and she was wondering if the pain was a muscle spasm. Plus she said I have a curve in my spine right by the pain.  She gave my antibiotics just in case (Cefalexin which I’ve nearly finished).  This whole thing led to me having a melt down on Sunday after I got home about how I was a burden, had wasted the drs time and ruined my parents day.  I’d already been struggling with my depression but that was the straw that broke the camels back so to speak and had my mum going “either you’re really ill or you need to go back to the Drs about your depression.”

My GP informs me that what I did on Sunday was The Right Thing To Do.  UTI’s freak me out which I told him (he agreed they are nasty) and with my having two v.close, one of which needed two courses of antibiotics to shift and my history he suggested I do a course of prophylactic antibiotics again.  Which as I said to him I’d not wanted to ask for but had been wondering if I needed.  So we have Nitrofurantoin added in for 3 months (100 mg once daily).

Oh and my Mefenamic Acid, Codeine and Paracetamol escaped the appointment untouched!


>I’ve always loved quotes.  I’ve loved them for as long as I can remember.  And on and off since I was 13 or 14 I’ve kept journals of quotes.  At the moment I’ve not got a quotes book on the go and haven’t for a long time.  It’s something I really want to start again however.  I love the moment when I read something and it just clicks, calls to me even and means something to me.  It might be that it makes me laugh, it might make me think, it might sum up what I want to say or how I’m feeling or it might fit a particular situation.  And sometimes I just add a quote because I like it and want to remember it.

Yesterday and today I’ve seen quotes that fit the apt and I want to remember them categories.  One was whilst looking at the beginning of a book to see if I want to read it (answer yes but not yet) and the other was when I clicked a link on twitter, ended up on an interesting looking site and found a quotes page on it.

In lieu of a quotes book I thought I would share them here.  Actually, make that three quotes because I just googled one to find out more about it and found another on a quotes page.

“The only things that stand between a person and what they want in life are the will to try it and the faith to believe it’s possible.” – Rich DeVos

“Never give up, for that is just the place and time that the tide will turn.” – Harriet Beecher Stowe

“In life, the microphone passes your lips but once… you had better be ready to sing.” – David Foster

Worthwhile reminders for me at this point in time and otherwise just lovely words.  I hope other people reading this will find them as useful as I am.

>An Explanation for my Absence

>For the past few weeks I’ve been really struggling with my depression.  Partially I think because I’ve not been getting out and doing stuff as much as I usually would for various reasons.  Thursday was a particularly bad day although I did get out for coffee with a friend (although not coffee as I don’t drink that or tea).  I’ve been finding that I can get out and do stuff, make it to appointments and the like but the energy and motivation to do stuff at home has been severely lacking and lots of things have slipped – like this blog.

So on Thursday I came to a decision and made plans to meet up with a friend on Friday.  We met in Oxford and had a wander round the Ashmolean which was really good fun.  Managed to see bits of it I didn’t see last time but I still don’t think I’ve seen all of it by a long shot.  I went slightly early and managed to get a couple of small errands done too.  I did feel better for that.  I also came to the realisation that if things didn’t improve soon I’d need to go to the doctors.

Saturday the same friend came round and we sat and chatted for ages and then went to the cinema to see Pirates of the Carribean – my CEA card making it much more affordable and doable.  That was my first ever Pirates film and I have to say I liked it although everyone tells the rest are better.  I have two offers of a borrow of the DVDs so we’ll have to see who gets to me first and then I can pass judgement.  I got some washing done before she came which was the first washing I’d done in a couple of weeks.

Today too I have felt a little brighter than previously although I do plan to go to the doctors.  I attempted to make an appt today but due to the way the system works that wasn’t possible.  It’s looking like I might end up going on Friday but I’m not sure yet.

And as some of you may have seen on Twitter, yesterday was a rubbish day for various other reasons.

>Monday Music – Somewhere Only We Know

>Because I’ve loved every version of this song I’ve heard. And because I love Glee. Wasn’t a huge fan of the way Kurt went from Dalton back to McKinley just. like. that. though. Totally unrealistic if you ask me. Anyway.

I’ve got a half written short story somewhere based around this song as inspiration (I often use quotes or lyrics as starting points for writing). I’ve been planning to get writing again. Perhaps that would be a good starting point?

>Burghfield Regatta 2011

>Last weekend was the Burghfield Sailing Club’s Challenger Open Meeting.  And I took part.

I sail in the Bronze class which is for people who need someone with them on the boat.  I do sail by myself on a Tuesday evening at sailability but the regattas can get a little scary with how close people get to each other and all jockeying for the best start etc.  So I don’t feel quite ready to go by myself in a competition.

As I think I’ve blogged before, I’ve previously found the competitions great fun but difficult because although they are for disabled people they’re not a great match for my own disability.  Particularly the fact that we do back to back races so you can be on the water for a couple of hours at a time.  I have a very high level of spasticity in my legs which makes it hard for me to bend and move them.  Being in the boat is really good for me because it forces me to sit in a different position and stretches them out a bit. But I can’t move them in or out of that stretch myself whilst in the boat (someone has to do it for me and that’s not possible on the water) and after a while it gets very uncomfortable, painful even and has meant I couldn’t do the back to back races. I was convinced that was a problem which was insurmountable and I’d never do very well in the regattas.  It’s part of the reason why I was so worried about going.

I use a sports seat in the boat which has proved really useful but not the complete solution.  This time round I took a little extra baclofen for a day or so before (my script is written for me to do that if I think I need it) and played with the dose so I took it shortly before I sailed.  It helped. A lot.

 For the first time ever I managed to do all three races on Friday.  Admittedly during the last one I was saying that I was hurting and told my buddy that I would need to go in soon to which she went “you’re not going in!!” and actually they shortened the course and started finishing people before I hit my breaking point.  At which point I didn’t care, I wanted to finish and hear the finishing horn sound for me as I went across the line (they sound it to signify you’ve finished racing and they’ve marked your details down).  I was a lap behind the majority of the fleet (although not the other bronze sailors) though and I did tell G that if they didn’t finish me and wanted me to do the extra lap I was done anyway.  But they did. The safety crew came and asked if I wanted to be towed in and I said yes!  I took pain meds (codeine) when we came in – partially because I was developing a headache but mostly because of the ache in my legs – I wouldn’t necessarily have taken it for just one or the other but both together and the fact I wanted to take part the next day called for the meds.

I ended that day with two Firsts and a Second for the bronze fleet and 9th overall (there were 11 sailors).  I was very tired and went to bed a couple of hours early

The second day I had a different buddy.  It started off with the traditional pre-race bacon sandwich and one of the beach crew who comes to most of the regattas came over and commented on how well I’d done the day before.  She said she’d never known me do 3 races in a day before – and as I said above I never had.  It meant a lot to me that people could see my improvement and recognised it for what it was.

I again finished all 3 of the races that day.  I’d been in pain before the last and could have dropped out (because your worst place gets discarded if more than 4 races are sailed) but I was too bloody minded and was determined to do the last race just in case it affected my standing – the first time I’d really achieved something in a regatta like that, I wasn’t going to jepordise it.

But I ended the day with firsts in each of the races and came 9th in the fleet overall.  I won the bronze fleet for the first time ever and now have a nice glass on display in my flat.  It has “Burghfield Sailing Club. Challenger Open Meeting 2011. Bronze Fleet. First. engraved on it.  And it’s mine.

Several people spoke to me and said well done and congratulations, even people I’d not really met before.  It was an amazing feeling.  And I can’t wait for the Oxford regatta to do it all over again.

>History of a Pleasure Seeker by Richard Mason

>Waterstones gave me an advance copy of History of a Pleasure Seeker by Richard Mason to review.  But a combination of my being busy and blogger being down means this review is a few days later than planned (I finished it Sunday) and actually the book is now out, having been released on 12th May.

Here’s the text from the back of the book, helpfully taken from the Waterstones website:

The adventures of adolescence had taught Piet Barol that he was extremely attractive to most women and to many men. He was old enough to be pragmatic about this advantage…’ It is 1907. The belle epoque is in full swing. Piet Barol has escaped the drabness of the provinces for the grandest mansion in Amsterdam. As tutor to the son of Europe’s wealthiest hotelier, he learns the intimate secrets of this glittering family – and changes it forever. With nothing but his exquisite looks and wit to rely on, he is determined to make a fortune of his own. But in the heady exhilaration of this new world, amid delights and temptations he has only dreamed of, Piet discovers that some of the liaisons he has cultivated are dangerous indeed.

The first thing I have to say is how much I love the cover of this book! Very stylish, it gives little away of the plot but has a decadent feel to it very appropriate to the plot.  I’ve no idea how they made books back in 1907 when this was set or wether they would have looked like this does (as though it has a ribbon over the back spine holding the book together) but it feels to me like a book from that period. Love it. Obviously an actual book with the same cover with an actual ribbon over the back would be much cooler. but, also priced out of my budget so I’m glad this one was faked!

I really enjoyed this book and at times found it hard to put down.  Some disability issues (relating to mental health conditions) are addressed as a sub plot and are for the most part well handled.  The one time they are badly handled it’s brief everyone is shocked and disapproving about that and it’s necessary to the plot.  As a disabled person I would prefer such issues were always well handled but that would be very unrealistic and in this particular case I’m not sure what else could have advanced the plot in such a way.  I was unsure if the interaction between Piet and the hotelier who employs him was realistic for a tutor and his employer or if he should have been treated more as a servant BUT it works and is well written making it believable.  That’s the more important thing in a book, in my opinion.

The book is about Piet’s search for pleasure in all forms – good clothes, good food, fine drinks, a better life. And there are sex scenes which whilst not overly graphic could make some people uncomfortable with the level of description and language used – these were not gratuitious but neither were they “and then they went to bed…” with the rest left to your imagination.

The book ends with the words “to be continued…” so there must be another book planned.  The ending itself seems a bit of a con, as though it just trailed off. I personally felt it should have ended a page or two sooner as this would have been much stronger.

Overall this isn’t the best book I’ve ever read or even reviewed but I did like it and there were definite “keepy you reading” moments.  I would have reservations over who I recommended or lent it to however.

>Quotes of Today #quotes #OBL


There are a lot of quotes floating around the internet today (mostly twitter). Here are a few that caught my eye.  I thought them appropriate for today (because of the death of Osama Bin Laden)

“I mourn the loss of thousands of precious lives, but I will not rejoice in the death of one, not even an enemy.”

– Martin Luther King, Jr

“The war for freedom will never really be won because the price of our freedom is constant vigilance over ourselves and over our Government.”

~ Eleanor Roosevelt 

“The price of anything is the amount of life you exchange for it.” 

~ Henry David Thoreau

An eye for an eye makes the whole world blind 

-Mahatma Ghandi

>”I’m Fine” or Telling It Like It Really Is

>I’ve been saying for a while that I planned to write a “what’s life really like” type blog post.  This isn’t intended to be a moan or a woe is me type post… it’s just intended to highlight that which I don’t often show and what saying “I’m fine” can really mean.

So far today I have

Spasmed and kicked the shower screen as a result knocking it open.  But thankfully the shower was facing away from it and I caught it quickly so didn’t flood the bathroom.  This happens most times I shower and the screens no longer fit together well.

Needed help to put my left shoe on as my spasticity just wouldn’t let me get that one on properly although it would let me get the right one on.  Worryingly that’s getting to be a bit of a situation normal.

discovered that I can’t get into the back of my mum’s new car.  So little leg room and so tight legs that I didn’t even try it.

And that my chair (which we had thought would fit easily) needs a wheel taking off and a lot of jiggling to get it in the boot and even then it’s a ridiculously tight fit meaning if there’s more than just me and mum in there it’s not practical.

Wheeled myself around Reading.  This involves being dropped off and picked up right outside one of the shops and skipping some of the places I would usually go due to spoons/distance/extra time needed when in the manual.  BUT I will say that I definitely think I’m getting a bit fitter.

Asked several complete strangers to open doors for me, fill up a cup with water from the machine, put rubbish in the bin for me etc

Had to get the shop assistants to put things in my rucksack each time I bought something.

Called my mum to ask her to meet me and help me sort out some tops to try on (knew she was in the same shop I was as we’d just been dropped right outside) due to reaching, not being able to see sizes (height again) and carrying them.  She came in the changing room with me as she had a top to try on too and that was easier although I could have managed tops without help.

Been very impressed that I didn’t have to wait at all for things to be moved out of disabled changing rooms. And then thought about how wrong that is – most people aren’t impressed when they can try tops (1 shop) and bras (2 other shops) on with no fuss, it’s what they expect!

Queued in one shop to ask for someone to help me reach the bras and find my size.  Which meant I had to tell her my size but thankfully I’m not modest about things like that.

Spasmed so hard that my footplate is knocked out of shape and needs adjusting yet again.  This seems to happen every couple of weeks.  But this is better than when I snapped a bit off in a spasm a couple of weeks ago (same leg, it’s always the same leg) and had to have a replacement part fitted.  It’s no wonder the last time I called the repair guys I said “Hello, can I arrange for my chair to be fixed please?” and they went “is this Emma?” is it?!

Gotten home tired and achy from shopping and needed to rest to recover.

Resorted to painkillers for my sore hip (probably due to spasticity as it’s my “good” leg hurting and the theory is it takes more of the strain when I transfer etc) and achy elbow (likely due to the wheeling). They make me feel a little more tired and out of it but I’ve not taken everything I can so it’s better than it might be.

Drank more than I wanted to as I was worrying I’d not had enough today (a frequent occurrence since I had that UTI).

I’m now going to sit outside and read a book for a bit.  I’ll transfer into my powerchair to do it because I can tilt it right back which is important as otherwise I’d have spent too much time in the one position which is not good considering I’m at risk of pressure sores.

Oh and when I make some dinner in a bit. I plan to make extra and freeze it for a day when I either don’t have the energy or the time to make a proper dinner.

>The Fight Never Ends – #BADD2011

>Today is Blogging Against Disablism Day (BADD).  BADD started in 2006 I believe making this the 6th BADD.  When it was first set up I was a campaigner and an advocate but not as much as I am now.  I was really excited by the prospect of this day when we could all come together and work towards a common goal – the fight against disablism.

6 years later? Not so much.

Days like BADD and other events like One Month Before Heartbreak are wonderful at raising awareness.  And they take a lot of work to organise so I have big respect for The Goldfish from that point of view – I would rerun OMBH but I’d really rather not!  The downside of such events however is the fact that once they’re over the attention can fade.  No one can fight all the time and no one can pay attention to fights that continue endlessly.  Personally I am suffering somewhat from “campaign” burnout at the moment.  In a way I’d really rather ignore BADD this year but I know that I’d feel guilty if I did that.  But I’d like to ask everyone reading this to remember that whilst BADD is a once a year thing, disablism isn’t and so the fight against it never ends.  If you take nothing else away from this entry, please remember that.

Disablism happens every single day.  If not to me then to someone out there.  I can’t remember the last day I visited twitter and didn’t see at least one mention of it.  Maybe not by name but implied in the description of what happened, the hurt feelings, the abuse or the pain.

There are a lot of things which happen to me which I don’t consider disablism because they are my disability normal.  Some of them I deliberately choose not to blog about because in the grand scheme of things it’s not a big deal and it’s easier to move on.  But then I find that if I do tell friends about them, just mention it in passing sort of thing they can be surprised by what my life is really like and think things are terrible when to me they aren’t.  That’s absolutely ridiculous isn’t it?  The struggles of life with a disability, of disablism blatant or accidental are so normal to me that unless it’s huge I don’t always register it.  Truth is however I can’t go along thinking and focussing on the negatives in life and how terrible things are because I’m already on antidepressants and I’d need a whole lot more if I did that.  I can choose to wallow or I can choose to live life and fight despite my disability.  And I choose acceptance, a fight and lots of living.

Want to hear something else that’s totally ridiculous now I think of it?  I recently had a conversation with someone whose partner (an acquaintance of mine) had started using a wheelchair a couple of weeks before.  I think it was unexpected and by the sounds of things it’s not been very easy.  All of which I’m sure we can agree is totally understandable.  But as we were talking (this was just a brief chat) a couple of things they’d been finding difficult came up in conversation.  They were surprised by what those were.  I was surprised by their surprise.

That’s something that always happens when I talk to new or short term wheelies.  They talk about how outraged and shocked they are that they had to be lifted up a step into the cinema or the restaurant they’d been looking forward to going to didn’t have access when they got there.  And I sit there and think “welcome to my world” and their shock and surprise surprises me.  Because things like that are normal to me and if I’d not been somewhere before I’d check into it.  It’s rare that I can just head out the house and go somewhere new without some advance research and there’s always this little part of me that wonders at the fact that others don’t have to do that.

Disablism, problems with access and other disability related issues and obstacles no longer surprise me.  That’s gotten to be true to such an extent that when I went to the hairdressers (in a new premises) on Wednesday and they knew where their moveable ramp was, knew how to use it, it worked for me and there was no fuss whatsoever I was surprised.  (and so was my (nondisabled) Mum when I told her – she commented they must have been practising as they knew I was coming).  But the fact that’s the case? It’s totally ridiculous.  The fact that I talk to new wheelies about issues and the fire they still have surprises me?  Even more so.

But that’s what life is like for me.  It’s what life has been like for me.  Disablism, disability etc have all been a part of my life.  They will all continue to be a part of life for me as long as I live.  I hope however that as the years go by it will be much much less.  But must of all I have a hope for all the new wheelies and other disabled people out there.  Those who today have had accidents, or strokes.  The small children with CP just learning about their wheelchairs.  I hope that they never find disablism becomes “normal” to them.  I hope they never become as bitter as I am at times about it.  Because that, to me, is why we have events like BADD.  It’s why I am, and always will be, a fighter.  However reluctantly at times.