Melting

Hello all! 😀

I’m hoping you’re considerably cooler than I am at the moment (although if you’re in western Europe, I think it’s even hotter, so I do feel sorry for you!). England is having a heat-wave and while it is lovely to see bright blue skies, I’m not particularly enjoying the heat that comes with it. Unless, of course, it decides to do a spectacular storm, it might be worth it then. 😉

I’m taking some time out of my current melting status to write a quick blog post. I’m not really sure where I’m going with it, but I felt like writing a relaxed post after the many structured ones of late!

I’ve been a bit busy since Download. I promised myself a while ago that I’d relax a lot afterwards but – as usual! – I’ve kept going, which has resulted in a slightly lower mood, but I seem to be getting past that at the moment. I think the first week after Download I went out a bit more (with the parents or just going on walks around the block) but didn’t do that much until the weekend where I spent a bit of time at my grandparents, as I haven’t had a lot of time with them at the moment. It was lovely to have a little wander round their garden and see how far it’s come since they moved in a couple of years ago!

After that I was pottering around. The weather hasn’t really stuck to one setting, as it were, so any activities have been varied, though I did go out into town a lot with the parents quite frequently! The weekend just gone we had a trek around car sales places (great phrasing!) as we’re considering getting a car that mum would be able to drive. I think we were all grateful that it was a bit cloudy the day we went, as if it’d been like this I think we might’ve all ended up on the floor!

What else, oh! I’ve been “sorting” (read: attempting to get rid of things but ending up keeping them all) through my DVDs and records. A wild life for an 18 year-old, eh? All I got from “sorting” was that I need to now impose a ban on buying those things as well as clothes (and books, but I’m ignoring that one). I forgot what I had though, so I’ve compiled a list of all of the DVDs and will eventually print it off and stick it on the inside of the cupboard they’re stored in. This is how I spend my evenings now!

I’ve also been thinking of some blog post ideas. I’ve quite enjoyed this year’s writings so far (however ranty they may have ended up *coughs*) and I feel like I’ve gained some confidence in my blogging, which I’ve definitely been unsteady about since I made this ‘ere site. While I’ve not thought about many posts for over here, I’ve thought about a couple for my second blog (which has been a bit neglected, oopsadaisy) which I hope to get up soon! I know one will be up by the end of the week, if I can get all the pictures I need for it!

I was also inspired by Ann’s blog post as I need to sort out how I manage my health. I have made several attempts at doing it this year alone, but I’ve always ended up leaving the notebook where I kept my tips on the side buried under a pile of crap. Totally not my fault at all… I don’t need to do any weight thingies or fitness (though it’d probably be useful in the future. At the moment playing bass is workout enough and as long as I get a walk in every week, my legs get a good stretch!) but I do need to loosely manage activities/resting. Of course me being me I can’t pace or anything (not strictly speaking, anyway) but I do want to be able to do more so fingers crossed I find something that helps a lot!

Anyway, this post had no direction and is pretty pointless as it stands, but yes, at least it’s an update of sorts!
I shall see you soon,
Jess x

Download Festival 2015

Hello! 😀

I have been putting off writing this as I really didn’t want it to feel like Download is now a distant memory, but alas, I must for the sake of keeping this blog alive (and I want to show the bands, obviously). It’s been two weeks now and I still miss it (though not as badly as the last time . . . Probably because this time it was a lot more wet – spoilers!). But anyway, let’s start from the beginning!

Friday was a really horrible day. Crappy weather and it really wasn’t all that enjoyable. Pretty torrential rain on and off left a very soaked through me, not fun at all. We caught most of Thunder (how ironic) and then Black Stone Cherry. Thunder were really good. I don’t really listen to their music but live they sounded pretty okay! Then it was a wait for a little while for Black Stone Cherry to come on. The wait felt like forever, but with a very nice chatty lady next to us time went by a bit faster! When they came on they apparently had quite a few technical difficulties (Ben’s pedal board got waterlogged, I think. Trust England, eh?) but they still were really awesome and I enjoyed it a lot. Not sure the payoff of being soaked through was worth it though! My voice quickly vanished after the first 3 songs but I somehow managed to join in the out of tune singing. 😉

Saturday started off with me having my MRI, which was quite interesting. I’m sure I’ll write about it when I get my results (maybe, who knows). Anyway, after that early start I was quite sleepy but I ended up having no nap, because I live on the wild side. So to speak. Ehehe. We went out in the afternoon to buy some waterproof trousers, just in case the forecast was lying (quite possible) and it decided to be chaos for Muse. We got back to the site in time to see the remainder (or the start, not really sure) of Faith No More, which satisfied mum’s teenager. Here are some pictures of their lovely flower arrangements.
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Excuse the many jaunty angles that there will be in following pictures. You’re lucky that they’re even in the frame, to be quite honest!

After they had finished I kept an eye on the stage because I wanted to see how they changed the sets. I took a lot of photos of the roadies changing it all. There was one who had to sweep up all the petals from the FNM set, it amused for a good little while. Then the chatter died down and MUSE CAME ON. Sorry, got a bit excited there.
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Hmm, Matt seems a little grainy in that one. Sorry about that.
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Better. 🙂

The whole set was lovely and heavy – an excellent choice for their first foray into Download! If people had been dubious about how much of a reaction they’d get, I can safely say the majority was a very large positive one! Nearly everyone knew the words to the opener (Psycho. They were all shouting “Aye, sir!” along to the video) and subsequently the mood was set for an excellent time. There were a few iffy moments (I think Muse – possibly Matt in particular) underestimated the response they’d get as there weren’t many chances to clap and scream, but once Plug In Baby came on everyone got the chance to “woo” along to the guitar before they went into playing the song. After that there were more chances to clap – yay. 😀 All in all I really loved their performance and while it doesn’t quite live up to Rammstein (my own thoughts of course and they are two completely different genres, but eh) I would definitely go see them again (most likely at a festival – purely for sound reasons).

The next day we were all a bit weary (dad especially – mud, steep hills and wheelchairs are not forgiving) but I was definitely excited for the earlier night we had. In fact I was counting down to coming home before we left. That probably sounds really bad, but I can assure you it wasn’t!

We got there in time to see the remainder of Billy Idol’s set (fair play to him, really), which was alright. Not particularly my cup of tea, but there we are. Another chatty lady was sat next to us so we spoke to her for a while during the set change. Slash came on and mum got excited over Myles Kennedy. I got excited over the bassist. I think we were both missing the point of seeing the one and only Slash . . .
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Sweet Child :)

Sweet Child 🙂

The crowd were a bit pants for them, which I felt was undeserved. Though when they did all the crowd favourites (i.e not their own material) everyone livened up a bit. Mum felt quite sorry for them all, but there we are!

After Slash was a little break for Mötley Crüe so we continued chatting to people around us (some Scottish blokes came up to us and asked if we were the ones they’d seen the previous night. While they were familiar to us, we weren’t the ones they were on about. I think we might’ve seen them the last time though!). When Mötley came on I got a little bit excited. Just a little bit. 😉 Unfortunately most of the lyrics had left my Lyric Storage Container so I mainly danced along (and kept a close eye on Nikki and Mick). Dad took a couple of pics of them for me (mainly Nikki, as requested!) as I just wanted to enjoy it. My camera battery was running low as well, not the best planning on my part!
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Nikki had some slight issues with his microphone (In the bottom one, the wind kept blowing it away from him, very amusing to watch lol) so kept going over to Mick’s side to use his instead. I’m glad I saw them before it was the end, but I feel like I went mainly to satisfy my 13/14-year-old self (nothing wrong with that of course!). They left quite a long pause between their last song and then the very last song (Home Sweet Home) which meant that most people had already vacated by the time they came back to do it. Unfortunate but that’s what you get, I suppose!

The journey home was quite quick, as I guess people would leave after KISS instead, but I was definitely glad to get up and curl up under a blanket!

All in all I really enjoyed the weekend (aside from the downpour, obviously!) even though it felt like I was satisfying my early teenager-dom rather than going as a fan. It might have been because of the mood I was in, but who knows! I’m looking forward to reliving it again this weekend, as the highlights are on Sky Arts. At least there’s no chance of getting soaked when watching it on the telly, eh? 😉

With that, I shall go now!
See you soon,
Jess x

 

Download Festival Survival Guide for the Chronically Ill

Otherwise known as Jess has listened to too much FOB and made her titles way too long.

Hello all!

I am here with a promised post (is this reality???) before I go off to the festival! It’s written quite tongue in cheek (because that is me all over) although this is pretty much what I’m taking with me (along with all the usual festival stuff) so please don’t feel bad (if you do that is. I find the whole thing amusing, so you should too!). The return of way too many parentheses. Oops. Also, some things are not featured because I have no clue where they are.

First thing on the list is sunglasses.
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Prescription sunglasses, that is. So that you can actually see what you’re looking at. They’re a very handy piece of kit that healthy people would use to protect from the sun’s beams, but we use them for many purposes. Like being protected from the extremely bright light shows (I’m looking at you, Muse).

I would show ear plugs next (what a brilliant idea, going to a concert only to get it muffled. Can’t have it all, eh?) but I have no idea where dad has put them. They’re very useful though, I thought I’d need them when I last went (especially for Rammstein), but I managed to escape that. Mum said that this year to see Muse I will need them. It seems this post is mainly how to protect against seeing Muse . . . Let’s change that!

Next up is all the medical-y things that help you to get through however long you’re going to be at the festival. As we’re only seeing 4 bands (One tomorrow, one Saturday and two Sunday), I don’t need to take too many, especially as we just drive home afterwards.

The anti-nausea things

The anti-nausea things

Painkillers and inhaler, just in case

Painkillers and inhaler, just in case

Sea bands and an extra dose of anti-emetics (well within the guidelines, before you wonder) to help before the journey. Polos to help throughout the performance. I went through a whole packet of Polos the last time I went, too many anxiety attacks and sudden onsets of nausea. It’s quite a good method though.

Painkillers (again, taken at the appropriate times) for when you need it, just in case your wheelchair/scooter/the seats provided end up painful. Or you head-bang too much and your neck hurts. Either or. Inhaler just in case the hayfever causes any issues. Should probably say at this moment if you have hayfever, take the appropriate meds that you need or use eye drops (another item that I have no idea of the whereabouts but shall be using).

Next are two neck related things. They may slightly hinder head-banging, but I’m hoping there won’t be any of that this year.

A neck cooling thing. Technical name

A neck cooling thing. Technical name

Neck support-y thing. Technical name

Neck support-y thing. Technical name

The neck cooling thing is gonna help with the heat and reduce any pain from sitting upright for too long. Just a bit of water on the collar bit and you’re good to go! Slightly sticky though (that might be because it’s old and got a lot of use at Download 2010 . . .) so best not to wear anything you really love.

The neck support-y thing is a new addition. With mum and I both having issues with our heads being too heavy for our necks, this should help lessen the pain. We’ve not tried them out before, so this is our first adventure with it. I’m sure I’ll report back on it after the event.

Lastly it’s the car journey. Things needed to make sure your journey to and from Download is as smooth as possible and that you don’t get sensory overload after each performance.
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An eye mask, a v shaped pillow and blanket. You’d be surprised at how achy/cold your legs get after sitting outside for an hour plus. Or maybe not. You might be more experienced than I am at going out. I digress. It helps to have a little safe haven in the car waiting for you when you come back from a wild night. I recommend it!

And I think that’s about it. If you have all the usual stuff you need (wellies/sturdy boots you don’t mind getting muddy, ponchos/macs, whatever else you take) and this, I’m pretty sure you’ll manage to get through the weekend. This is what I’ll be taking with me and I’m sure it’ll make the experience more pleasurable after an MRI adventure.

With that, I’ll go. I should hopefully see you afterwards, though don’t be surprised if you don’t hear anything for a little while. We all remember the last time!
See you soon,
Jess x

An updated room tour

Hiya!

I thought I’d give you guys a little break from writing some lengthy posts and show you my updated bedroom. I still need to get dad to pop in the treadle sewing machine, but that can be done at a later date (besides, I’m a bit eager to show it off). I did one last October (which you can read here) but I think it’s about time a fresher one is done! I might not have all the sides of the room taken (honestly can’t remember what pictures I’ve taken and I only just did them!) so if you don’t see the lovely bookshelf my dad built me you can check it out here. On with the post!

First off is my desk, I’m quite a bit in love with it. This is a relatively new addition but now it takes over the role that my chest of drawers had. It’s very pretty though! 😀 It’s lovely to write at in the mornings and in the evenings, the light hits it beautifully!
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Obviously the time I took this picture the sun just had to not be hitting it perfectly, but there we are. Can you believe I’ve kept it this tidy for over a week now? I’m quite amazed with myself.

Next is where all the clothes are stored. I know words! I really quite love this as well, to be completely honest! Dad has had to fix the chest of drawers a bit as the wood that the drawers run on have worn away from all the use it has had. Not too bad though, eh?
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My dolls house just fits on top of it and we used the fabric that’s on the headboard of my bed to protect the top of the dresser. Makes a use out of excess fabric at any rate! Sometimes I feel like I need an extra suitcase on the top of the wardrobe, though I think dad might have something to say about that! We shall see. 🙂

My wall of photos has increased a little bit now. I hope to fill that wall with a lot of photos, but I have to wait until the treadle is in situ as it’s going on that wall and (even though I measured, honest!) I’m not sure how far it’ll come up.
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I’m quite fond of this too. Are you sensing a theme?

Then there is this chair, which I’m not sure if I’ve shared on the blog before. This corner is quite nice to read in (though at the moment I can’t actually concentrate on books, so there’s not been much of that going on) and is very comfortable. I like chairs.
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I think that is that! I would’ve showed you how pretty my bed looks with everything and how it ties it all in, but I really could not be bothered to make it. Sorry about that. I hope you enjoyed this little nose at my room as much as I enjoyed showing it. I think it’s sufficiently old-timey enough now and for that I’m very happy! Now I just need to get started on the guest bedroom/my day room. I think I might need to tidy it first though, could be a good start!

Now, I’m not sure when my next post will be! Download Festival is this weekend so there might be a little bit of a radio silence while I recuperate, though I have thought of a cheeky little post idea that I might do either Thursday or Friday. Don’t hold me to that though!

See you soon,
Jess x

A rant about education

Hello all! Today I thought I’d talk to you about the joys of trying to get an education whilst suffering with M.E. I’ll say before I start that this has only been my experience and doesn’t speak for most sufferers (as I know some people who have had relatively okay experiences). Just as a word of warning!

I suppose I should start from the beginning, although you know the history of how I became ill, I’ve never really touched on the education side of it. Though if you’ve been reading this blog for a long time I’m sure you’re aware of how important education is to me!

In early 2007 my health started to deteriorate again and an opportunity to be in the school play fell through as I was ill throughout the rehearsals. I had about five weeks off school before I returned – much to the annoyance of one of the teachers for essentially “ruining” her plans for the production. Cough. I managed the rest of that school year before going up to Year 6 and going on the school camp. I’m pretty sure that’s what finished me off (although it was a very enjoyable experience and I’m glad I did go).

For most of early 2008 I managed to attend school and get through my SATs (spurred on by the usual threats the teachers give you of “if you’re ill you have to do it anyway!”). It was after that, however, that my health began to dwindle rapidly and soon I was having every Friday off school due to the fact I was so exhausted (much to the annoyance of a few fellow students by saying “we all get tired on Fridays, but we don’t have them off”). That was followed by a period of time off school, during which I was bed-bound for the majority of it. I somehow managed to gain energy to enter school for a morning or an afternoon for, I think, a week or so. I can’t really remember the specifics of that particular time, but I do remember the awkwardness of having to explain why I hadn’t been in to all my friends (who wrongly assumed the colour in my cheeks were a good sign).

My teacher had insisted that I needed to attend the step up day at the nearby secondary school (I assume in the eventuality I got better and would actually need a school to attend to). I went nonetheless and I actually wanted to stay for longer but, when I got home and spent the rest of the day in bed, I don’t think that was really possible!

After that school year ended I spent the summer holidays in bed, with occasional trips to the hospital. On the first day of secondary school I gave a letter to the deputy head of year, that mum had written, explaining that I had been very poorly and if I felt ill again she needed to be contacted so that I could be taken home. When it came to lunchtime the smell of the cafeteria made me feel incredibly unwell so I went to the nurse’s office and asked for some of my medicine in the hope that’d help. Unfortunately I didn’t get sent home like I had hoped (I assume they thought I had first day nerves) and continued on with the day until I got home and collapsed at the bottom of my stairs. The next day I had a half day and the next week I was in hospital with a relapse.

Mum researched for other places to educate me whilst I was at home so in the October (or November) I had a meeting with a place who were very helpful and offered me online lessons. I had my first lesson which, because I was doing well with it, I ended up staying for the whole hour, even though it wasn’t expected of me to do so. That resulted in me hobbling to bed to promptly pass out in my dark bedroom so I could sleep for the rest of the day.

My next experience with the same education people was in early 2009, after I had met one of my best friends (we both attended the same distance learning centre). They organised for one of the tutors to come and visit me each week and we did a mixture of English and PSHE. I had to have them come up to me in my room due to the fact I physically could not get downstairs without my legs collapsing under me. We gradually built it up to two sessions a week and by the September they had built it so that I would have 3 different tutors on 3 days (Monday, Wednesday and Friday – to give me time to do the homework and recuperate in between lessons). This involved maths, science and the English/PSHE mix.

During this time we were having regular (ish) meetings with the school team at the secondary school to see if I could gradually build up time there (maybe to see if I could have my lessons with the distance learning team in the SEN area at secondary school). They were, to put it lightly, not very helpful. With the M.E fluctuating constantly, it’s not very reliable and from that point of view I can understand, though it would’ve helped if they had been more supportive (given they said they had an older student there with M.E who they helped a lot, but we’ll ignore that, eh?).

Pretty much after those meetings I was going into school for half an hour sessions (My paediatrician and psychologist said it would be advisable for me to go in for 10 minutes at break just to get used to the idea of being in the school environment again, and I’d be able to meet up with my friends etc.. Look how that worked out …) and resulted in me relapsing. I will point out that this was in November and I was surrounded by many hundreds of students, you can probably guess that I caught something.

The whole of 2010 was pretty miserable for me. I was very emotionally and physically drained after the relapse and school (and other unhelpful busybodies) were pushing me to continue on with my education (even though my baseline was at about 1 hour of high energy activity again, go figure). I continued with my original tutor who taught me PSHE/English but they soon added in someone different (to keep up with the things I was learning before. I had severe social anxiety, to the point I froze at the top of the stairs and couldn’t get downstairs for my lesson. Again, go figure) and mum, at that point, snapped a bit (a lot, *grin*).

Our family was a bit stretched as we were constantly arguing about the state of my health and the obvious need for me to keep up with my education. Mum researched home education like a mad woman and soon I was pulled out of school, with really no intention of going back. Everyone kind of had a fit at that (“she will be isolated!” Oh now that’s when you consider how I’m feeling!) but we were approved and I obviously continued to get much better now that there wasn’t pressure for me to perform like they wanted me to, and I caught up on about 3(ish) years worth of maths in 2 years. If that doesn’t say something, I don’t know what does.

After we moved to where we are now I had the last meeting with the home-ed people as by the time they’d see me next I will have had a birthday and therefore not needed to see them. While my education hasn’t been as … structured, should we say, as it had been when I was a bit younger I have been learning about how to deal with the real world and I’ve explored a lot more of my interests in depth (ones I wouldn’t even touch 4 years ago!). My health has improved so much because I’ve no longer had the stress and anxiety of needing to get everything school related done to fit in with the conformity of what people thought I needed (when really I needed everyone to sod off and leave me alone to get better!).

Last year into early this year, I felt well enough to consider going back into education, but doing something relatively easy, so as not to completely screw myself up again. I was working on my English and maths (more so my English as I struggle with it a lot more) and I attended an open day at the local college to see if it’d be even possible for me to apply to a course. They said it’d probably be a good idea to see about just doing a maths and English refresher sort of course (can you tell I remember exactly what it is?), just to see if I can cope with doing the work etc. which was very sensible. We then ended up in the photography department and it all went a bit downhill from there, to be honest!

I ummed and ahhed over whether or not to apply, but after speaking to the learning support people they essentially said to apply anyway and that we’d work from there. I ended up applying, got an interview date (my interview was probably unlike the others in terms of the majority of it was spent wondering how the hell they could be flexible enough to let me on the course – the joys of focusing on attendance rather than the education of young people) and got offered a place, which to me is a massive achievement and that’s how I’m viewing the whole thing.

We went back in a few weeks later to discuss the logistics as the head of the department (as always!) had issues with the attendance problem. He didn’t turn up at the meeting to voice his concerns, so it was a very awkward 15 minute meeting of wondering what on Earth we could feasibly do. They suggested coming in for a taster session, so I could practise getting up early and going to see how the lessons are structured. I was told not to give up hope and that something could be sorted, hopefully.

As it is now June it doesn’t particularly likely I’ll hear from them and for that I’m relieved. My health has taken quite a severe drop again and my cognitive function is not as it was before I applied to college.

What frustrates me through all of this (finally getting to my main point, only took me 1700+ words, oops), is that the only thing schools look at you for is what rating they can get for their attendance marks or their grade marks. You may be fully capable of doing the actual work, but just because you can’t get to the building in order to do lessons that accompany it, you’re not really of much use. They see you for the illness and not the person who wants desperately to do something with their time that results in them getting some sort of path to the future, when they become well enough to work in their area.

I don’t see why we should be … discriminated, for lack of a better word, for something we can’t control? I have never chosen to feel the way I do and I’ve certainly never wanted it to stop me from achieving things with my education. The stupid thing out of all of these incidents is that I feel like the bad guy because I’ve made all these people fight for my education when I couldn’t and then couldn’t continue with it because of error on their part. We all have a right to learn but that proves very difficult when the education people see you as a statistic rather than a person.

If this has made any sense I would be pleasantly surprised. I’ve written this over the course of two months and both times were during brain-foggy days (because that is obviously the most sensible time to write anything opinionated!).

I shall see you all soon with another (probably equally ranty, though hopefully more inspirational) post soon!
Jess x

PS: I’ve said in a recent post that I don’t really identify with M.E but to make things simple (and because I don’t have results yet) I’ve said M.E!