>No fame for me!

>Well, I’m not front page news today. Or any other type of news.

The article about my trip was not published. I’m guessing it will be published next thursday but who knows?! I’m more than a little annoyed about that mostly because I literally told everyone that I was going to be in the paper today.

LOL Ian who I work with had told me I could expect there to be a mistake in it because whenever he had read an article he knew about it hadn’t been 100% correct. And Joan had backed him up too. So when I saw him today I was joking w/ him going “Ian you were right they made a huge mistake with my newspaper article…. they forgot to publish it!!!”

In theory I should see the person who wrote the article on Monday (she wasn’t the one who told me it would probably be in today) and I will ask her if she knows anything. In practice however I might cave and call her to see whats what. We shall see.

>Out of Sorts

>I am feeling very out of sorts today but I don’t really know why. I have had some good moments today to though – like finding my missing switch card (It had fallen under my computer desk) and discovering that a portfolio I am working needs a lot less doing to it than I anticipated and I should be able to finish it tomorrow with no problems.

The knowledge that getting the portfolio finished takes me one step closer to something I’ve been close to but not achieved is even better. If I’m right I have two more “steps” to complete and then I will have accomplished a goal I have worked towards for two years. But, that said every so often I get told about more things that I need to achieve to have this. Friday is the day I will find out, I guess.

Both of those things have made me feel a little less out of sorts but I still feel kinda meh.

I guess actually if you replaced “out of sorts” with “down” you’d be very close to the truth of the matter but not quite there. I’m not quite right physically (haven’t been for a couple of weeks) and I’m stressed out about tomorrow and Monday.

Why tomorrow stresses me out I don’t know – I know the “what” – the newspaper article being (probably) published. And Monday is the first of my presentations on my trip. And they are gonna feed me first. And I’m forever spilling my dinner down myself. Or getting it in my hair. Although I did go for the chop yesterday and so it would be a feat and a half if I managed to get my dinner in my hair again anytime soon!

What I am, Am, AM going to do tomorrow is write up the last two days of my trip. Because when that is done I can edit it into some kind of form for a 20 minute presentation. I think I am gonna wing most of the presentation but I want to go with a outline. Oh and when I’m writing tomorrow I must remember to add the tribute to Hulya on the second day because I just realised I forgot to include that and it was one of the most cool things that happened. The coolest being my having gone aloft, obviously.

>Courageous Christi and other kids who inspire me

>”Courage is not the absence of fear but rather the judgment that something is more important than fear. The brave may not live forever but the cautious do not live at all.”
~Princess Diaries

I am a part of the Big Brave Banner Site. Although I’ve not done any work for them in several months I help to make graphics for sick children. A lot of them cancer or other very serious illness and all have websites so thier families and friends can follow their progress and the kids like the graphics as they are bright and fun.

One child I was led to through the banner site is Christi Thomas although I didn’t actually make a banner for her. Christi was an amazing girl who sadly died last tuesday. I found the above quote in the comments on her blog (linked in my sidebar) and I loved it. For me… but also for Christi for if ever there was a child or even a person (child or adult) who was that quote embodied. Christi was it!

Please, if you have the time take a few minutes to go to the banner site and meet some of those brave kids who fight for their lives when they should be playing. We all know how good a comment in our blog makes us feel… imagine if you or your family were fighting a serious or even terminal illness how much a “I’m thinking of you” or an “I stopped by, I care” message could comfort and help.

There are many many many sick kids and I follow entirely too many. But, I will tell you about a couple. That doesn’t mean they are more special than others just people I am aware of who are having an extra tough time now. I could share some of their stories here but going to visit them tells it so much better than I could so I will just share their links.





Actually, looking at that list the only person on there I made a banner for is Sammy. It’s the lilac one on the bottom of her mainpage. the flashing on that says “smiling and singing all day long. There’s NO doubt – Samantha is STRONG!!” Because she is.

>Local People

>I think only a few people read this who are local to me (I’m not 100% sure but I only know of a few) and I doubt any of them care about this but I am excited so I’m gonna post this anyway.

It is looking very likely that an article about the trip with the Jubilee Sailing Trust will be appearing in the local newspaper (Herald Series) this Thursday.  Complete with a photo of me just as we were setting off.

In case you don’t know if you’re local to me I live in South Oxfordshire and that’s as specific as I’m gonna get here!  And for the not so local people, I believe it will be on the This Is Oxfordshire website but don’t hold me to that.

Actually don’t hold me to any of that because we only think it is being published this week we don’t know 100% definitely.

>In Vodka We Trust

>I have had a wonderful, wonderful day. And I am even more wonderfully drunk.

I met up with my best friend who I haven’t seen in four months and who has been informed that four months is entirely too long between visits. We met up in Reading which is easy for both of us to get too.

We had a wander around the shops, got some lunch in the slug and lettuce, did some more wondering around shops (with actual purchasing involved this time) and then went for drinks.

I bought a scarf in a bag (that you make you self, weave it) and a Smoosh Me pillow to go behind my back in my powerchair. I got a purple one and using it to change my position in my chair got me so much more upright and so much more comfortable. So I was very pleased.

I was not so pleased about these little kids who were running around in Wetherspoons and who became obsessed with said pillow (which describes itself on it’s label as love in a pillow). This little girl was stood behind me and just started stroking it! I was leaning on it too. then she ran off with who I assume to be either her brother and sister or friends. So we had just finished our drinks when she came back with both the other brats and they were stroking it and pulling on it etc etc for ages. It was cracking me up, particularly as I was finding it a little ticklish. To start with at least.

But then I couldn’t get them to stop (I would place the eldest at no more than 8 or 9) and eventually Trudi pretty much forced them to stop. The didn’t seem to want to but the eldest seemed to realise they had crossed the line and got them playing tag. Only they decided that I was “It”
We decided to leave and head to our favourite bar for another couple of drinks – Revolution. Trudi and I both said we felt a little sorry for those kids because there parents did seem to be ignoring them (and Trudi said had already been warned by the staff once to watch their brats) but they nearly broken the damn cushion and I literally had just bought it. I was very happy to reach Revolution which is vodka bar and I love and best of all – a child free zone!!

Double brandy and coke in ‘Spoons – £2.99
Flavoured Vodka Cocktail in Revolution – £4.75
Leaving behind bratty kids who were messing with my wheelchair – Priceless.

>Revitalised and Birthday Wishes

>Today is my wonderful friend Chana’s Birthday! Please take the time to go wish her a very happy day. Go on, I’ll wait.

What news of me?

There is a possibility of really good stuff happening in November (some of you know what I’m talking about) I’ve been waiting for literally a week now for confirmation of whether or not this opportunity will become reality. It’s driving me crazy not knowing especially as I’ve literally had NO post all week which makes me even more apprehensive.

After three weeks away from work I returned yesterday and today. Both days went really really well from my point of view and I felt like I settled back in easily, something I had been worried about. In fact yesterday the other two advisers who should have been on couldn’t make it so it was just me and my supervisor – talk about thrown straight back in at the deep end. Thankfully

given the choice of sink or swim I was able to swim and do it well. It might sound strange

given how long I’ve worked there but I would say I felt a lot more confidence in my abilities as an adviser yesterday and today than previously.

this write post screen has just gone really screwy… i hope it isn’t going to transfer to the published post but… eh

I went to the nurse this morning to talk about my diet. That’s going well but is a topic for its own post somewhen soon. She commented that I seemed revitalised and I think she’s right. I had been trying to come up with the correct words for how I’ve been feeling since I came home again from my JST adventure and I think she hit the nail on the head with that one!

>Auntie Nellie

>My Great Aunt died last week. She was 97 – a good innings as they say. I hadn’t seen her in many many years and I can’t say I knew her well.

I have a few very fond and quite special memories of her. Not many memories, but ones which I have enjoyed sharing with others these last few days. I would say that she definitely touched my life and although I rarely saw her or spent much in the way of time with her I have learnt from her. We talked about her a little the day of and a few days after my Gran’s funeral (she was married to Gran’s brother) but I can’t say other than that I’d given her much more than a passing thought for some time.

I said last week to a couple of people that I thought going on the JST trip had helped me to feel less guilt. Well, not today. Today I feel guilty. I am trying to rationalise the fact that I didn’t really know her into thinking sensibly and remembering that those we love do not leave us as long as they are remembered.

Her children and grandchildren knew her better than I did, can remember her face while I cannot clearly. But I got to see things and be there for things that they did not and that helps her memory to live on in a way it otherwise wouldn’t.

I’m also trying to remember that my Gran and Grandad live on in their memories too. They didn’t know them as well as we did but they knew them in a different way. And just as the parts of them that were Mum and Dad, Gran and Grandad were a very important part of them so was their role as Kelly and Barney’s Auntie Jean and Uncle Henry

I will miss Auntie Nellie but the fact I didn’t know her well and hadn’t seen her for years doesn’t matter – the fact I knew her and I remember is all that does.

Requiescat in Pace whilst you live on in our memories Auntie Nellie – Thank you for teaching me and for being who you were/ARE.

Do not stand at my grave and weep
I am not there, I do not sleep
I am 1,000 winds that blow
I am the diamond glints on snow
I am the sun on ripened grain
I am the gentle autumn rain
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled light
I am the soft star that shines at night
Do not stand at my grave and cry
I am not there; I did not die

>The Third Day of My Trip (AKA the day I was silly and had too much fun!) Fri, 8th Sept

>Friday, bright and early we were up yet again – 7 am and they wanted us all on deck by 7.30 – no time for breakfast! Somehow in those 30 minutes Rosie managed to get a shower and get dressed then get me set up for a quick shower (hair wash and important bits) and back to our bunk and then dressed and on deck. She did scrape my foot up a littlemanuevering me out of the bathroom but not badly and to be honest if not for the fact that she panicked about it and insisted on taking my trainers off a few times later in the day to check on it I probably wouldn’t have been bothered beyond my initial “OOOOOww that hurts!” So we were pretty shocked at how much we managed to get done in that 30 minutes. I can get myself ready in 30 mins but to do it in an unfamiliar set up when I needed help (and that 30 mins included the time my buddy/carer needed to get herself ready) and I was sharing a bathroom with two other wheelchair users

We made it onto deck and had a drink and a biscuit or two – healthiest breakfast we had all week :P. We could see the harbour of Cherbourg approaching as we stood there. After maybe ten minutes they set us to various tasks necessary for getting the ship docked. I had to help Jo with the fenders. They are huge bright orange buoy type things which are almost as big as my wheelchair if you ignore the backrest (I hope that convulted explanation makes sense!) and they are tied on then put over the side into the water. It wasn’t explained to me but I *think* the idea is that they go between the ship and the quayside and prevent one scrapping against the other. We ended up turning the ship 180 degrees and so after I had helped to lift one up, over the side and into the water, they had to be pulled back in and dropped on the otherside. I didn’t help with that bit. That took quite a while and then they said that there was “just one more thing to do” and then we would put the gangplank down and go ashore for watch and voyage crew photos. And off they sent us to the mainmast. Where Jo, Fiona the cook and Nigel her assistant were waiting. With two or three huge platters of bacon butties for breakfast.

Mmmmm Mmmm MMMMM they were good! I have no clue what time it was by that point but I don’t think there was a single meal all week which was more welcome and more enjoyable than that one!

Once we got the gangplank set up (yay for more hauling on ropes – I think I need to start doing that here if my 4lb weightloss that week is any indication!) literally everyone went ashore for a photo of every single one of us and the permanent crew (with the exception of Pickles) and then photos of each individual watch. I have ordered a copy of my watch photo and the voyage crew one but haven’t received them yet. I also got someone to take a picture of “Fwd Starboard” aka my watch on my camera too.

Assisted climbs came next and I got to go aloft in a wheelchair as a part of that. Not my wheelchair as it wouldn’t go on the frame but Jo helped me get transferred into one of the ships ones. I had a transit seat on again like always on the boat and I had to take my waist harness off. My transit seat was roped up onto one rope with the straps like a regular sling (a transit seat is basically a type of sling but for manual lifting not hoisting – I don’t think as a rule you can hoist with a transit seat). And theframe was passed around the back and underneath the wheelchair and that was roped on too. So I was perfectly safe and if one rope failed i’d still be held.

A few people seemed vary of the idea of being lifted in a transit seat (on the whole not just here) but I used one when I was at college doing my a’levels – sat in it the whole time and was carried up and down stairs – as well as in and out of the pub! -several times so the prospect didn’t bother me. I love transit seats. Anyway, I digress.

Basically being lifted up the mast involved several people on a rope one side of you hauling it (gently, this was not a “2,6!” job) and a couple of others the other side holding it steady. Rob was right next to you checking all the ropes etc, Matt was part way up to make sure you didn;’t get stuck on the roof of the deck house and Devon Dave and David (told you they were all called Dave!) were on the platform where you ended up. I helped to get some of the others up and it was more long work than hard work – but by that stage I’d stopped viewing hauling ropes as hard work, tbh.

I screamed OH MY GOD, OH MY GOD the entire way up and when I reached Matt he was like “you’re only ten feet up Emma, you’ve a way to go yet love” in his scouse accent. But when I got to the top I was loved the view – it was so worth it! I was level with the top of a four storey building and about halfway up the mast. It was pretty smooth to be honest and relatively quite quick just a little disconcerting to be lifted off the ground on a rope like that! When I was talking with Devon Dave on the platform one of the things he said to me was that going down would be nice and gentle and if it wasn’t I would know they had dropped the rope! Yeah, thanks for that Dave!!

I had known all along that I was going to go up, it was optional but I was determined I would do it. So much so that when I was told that the reason my chair wouldn’t go on the frame was the strap which is part of the folding mechanism and if not for that it would be fine I just went “oh just cut it off then, it’ll be alright” (You can fold the back w/out the strap but i don’tknow about the seat and I didn’t care either, I was that determined). but they told me NO they would put me in one of the ships wheelchairs.

We were given Shoreleave next and Rosie and I went ashore with Jim and Andy from our watch and this guy Peter who I’d not spoken to before (from another watch). We were joking a lot about being with “Rosie and Jim” as there is a childrens TV show of the same name. We also ended up teasing Rosie a lot and ended up with something of an ongoing joke for the next day or so about that. It is one of many examples of the wonderful camaderie there was on this trip. BUT I think she got a little annoyed by the teasing; it went on and on then kept reappearing!
First, I took the opportunity to ring my mum at work while we were in France and she sounded very surprised to hear from me! She was abit like “your in France?! Cherbourg?! Ashore?!” Then we found a bar for a drink and Rosie was very disappointed to find they didn’t have the Cider she’d been dreaming of and talking about all day. My coke, however, was lovely! I only actually had alcohol the first night (when we had punch/sangria under the mainmast) and other than that stayed on the soft stuff. We wandered on for a while and Peter went to do some shopping for his wife. The rest of us ended up in this cute little restaurant for lunch. I split a pizza and some chips with Rosie and we got huge portions of very delicous food!

We walked around a little more and then Jim and Andy went back to the ship. Us girls stayed ashore and did the typical thing – shopping. I bought a few postcards for my scrapbook (some of Cherbourg and some more artistic/stylistically adjusted ones) and a very very groovy new bag which was a bargain and a half at €10. There was quite a lot of window shopping and “oooh should I buy it?!” too. We really did have quite a good wander and after that we had a sit by the harbour for a while and a chat/watch the world go by. I bought some maltesers and ate them sat there too… they were exceedingly yummy and were the only chocolate I had during the trip!

Went back to the ship for a rest after that… it was getting to be high tide and so we needed to use the rope to get me on the boat again, they held it a little high and so I kept tipping up a little but it was OK. Didn’t end up getting too much of a rest, a bunch of us were sat on deck by the mainmast chatting and laughing and generally having a GOOD TIME. Pickles was there too muttering about getting drunk and teasing too and then Dan turned up in a taxi having been given the very important job of buying the stock for the bar! It was pretty chilled and great fun.

After probably a couple of hours we went for a quick wash and a change of clothes then three out of four watches ended up going out to eat altogether, entirely by accident. Chris and Gudrun had arranged to take whoever of their watches wanted to go out together and issued an invite to the rest – both of their watches and our watch all went. There were 20 of us including five in wheelchairs and it was an adventure! We walked quite a way and went a different way to earlier, obviously we had missed a big part of the town. We went past a very beautiful and gothic looking church which I would have liked to explore if there had been the opportunity.

Eventually we found an accessible restaurant we liked the look of (I think someone had spotted it earlier but I don’t know for sure). The staff claimed they couldn’t take us when they heard there were 20 of us and five wheelchairs, they said it would take up too much space and they wouldn’t be able to get to the kitchen so we couldn’t go. Got to give Chris her due here, she wasn’t phased and by the time Jane, Lucy, Rosie and I got there (we were at the end of the procession) she had rearranged the entire restaurant to give two big long tables for us and then informed them that “Now you can take us.” The food was wonderful, I had strips of roast lamb in a kind of gravy and french chips! The company was great too and I think – I hope – that I can safely say everyone had a great time!

Rosie, Me, Vanessa, Jane and Lucy were among the first to leave as we all had to go on watch at various points in the evening/overnight. Getting back involved a few adventures including me nearly coming out of my chair and Jane nearly getting hit by a car because Lucy forgot that they drive on the other side of the road! When we got back to the ship the captain was teasing us and complaining going “couldn’t you have come back earlier?! we wouldn’t have needed the rope… had to go out to eat didn’t you?!” LOL! He had the back of my chair going up and told them repeatedly to make sure they kept it low and it lower it whenever it started to lift my casters!
Once back on the ship I went to the bar and transferred into a regular chair as my legs were getting a little sore. There was a big group of the voyage and permanent crews together (including the Captain!) in there and there was lots of laughter, joking and phototaking to be had. Someone found a guitar and played and then we were all singing various songs. I didn’t know most of them but soon picked up on the choruses and despite completely lacking the ability to sing in tune joined in with no heistation. I love to sing and it was just one of those situations where you;ve got to join in. I was due on harbour watch at midnight till 2 and had intended to take a nap but ended up having too much fun to do so. Eventually I had to drag myself away just before midnight to change into warm clothes and go on deck.

Harbour watch involved two of us (half the watch) – me and Rosie having to keep an eye on various things and making sure that no one who didn’t belong to the ship came aboard. If that or certain other things happened we had to send a runner for the officer of the watch (Captain Dave) or the duty Engineer. I had had a freak out about that (I couldn’t act as a runner so if something had happened would have been left alone on deck) but Matt had been confident it would be fine and so nothing was done. It transpired the next day that the two people did not include the watch leader who was meant to be there as an extra body (but wasn’t, we had thought that was a little off)!

In the restaurant I had a bigger freak out and cried a little, Rosie kept telling me it would be fine. But I just said a few times I can’t do it and when she kept saying it would be fine, I could do it I explained that I have depression/mental health issues and the thought of doing it was sending me into a spiral of downness panic and anxiety and I really couldn’t do it if it were just me and Rosie. Jane was there and she really reassured me that if I couldn’t do it no one would force me. Jim said that he would come up on deck with us and I didn;t have to do it if I didn;’t want too. I did want to do it and I did do it I just didn’t feel I would be safe leaving things as they were planned and personal safety is a big issue to me/for me. At that point in time and also the next day I really wished that who both me and rosie are and how things had happened had allowed for me and Rosie to have a decent this is me and these are my issues chat at the beginning of the voyage – I was getting pretty frustrated at this point by the way my needs were/were not getting met and I was being treated. Part of it, I think was a sleep deprivation issue as by the time we came off watch and went to bed I’d been up 19 hours. Also my care needs were in part substantially higher than I had anticipated and that was relatively hard for me. It was the one time on the voyage that their disability doesn’t matter policy/attitude was hard for me to handle – I can’t put why into words very easily though.

Nothing really exciting happened… I wandered around the ship taking a few photos, talked to a few people and just enjoyed the night. Jane and Lucy had been on before us and they had a few shitty drunk people but the only drunk people we had belonged to the ship and were exceedingly funny as they came back on board! Too much fun!! I was texting a few people back home and it was all pretty surreal to think it was 2 am, I was in France on a boat which I had helped crew and sail from the Solent. I was responsible for fire watch and making sure the ropes didn’t come undone and I’d been up for 19 hours.

My bed was more than welcome that night!

>Mostly Medical

>I finished the abx for my UTI about two and a half weeks ago and haven’t had another problem! I am very surprised about this given both my history and the fact that I had D&V on Thursday which frequently can lead to UTI. My bladder is a little irritated right now but I think it’s red army-ness. Actually you could say that I am downright shocked that the infection cleared with one course of low dose antibiotics. That’s one of about three or four things that’s happened/I’ve done/not done/not had happen lately which has surprised me. I guess I’m making lots of progress in my life and with my issues.

Meds are a problem for me at the minute… I need to get back into a better routine of taking them again :o(. I can definitely tell that my baclofen level in my blood is low. But I am feel relatively stable despite having basically taken no prozac all week. I am going to start taking it properly again – I am doing well now but there are lots of things going on and a med change after two years on prozac and three and a half on antidepressants is a VERY SILLY IDEA. I need to discuss my mental state in more detail here so I can get it straighter in my head but to do so now would undo some of the good work i’ve been doing.

Soph moved to Manchester today for uni. I am very intrigued to know how she is getting on and what she is doing. I rang to speak to my mum to see how she got on getting moved in but apparently the parents are staying away overnight. No one had told me that! Ben did say that Soph is in a flat of four (which we new) two girls and two boys.

And as for me? I went to Sainsburys coming back with a whole new outfit, some make up and some magazines as well as my food shopping. I do seem to be buying a lot of my clothes in Sainsburys lately. And I’ve been scrapbooking both yesterday and today (five pages over the two days).