Again...

...a similar shot to yesterday.

(A warning...this turned out to be one of my long posts again, so do not feel you have to read it, but you could come back to it later when you have more time, and with a cuppa and a nice cake...)

But yesterday’s fusion shot was the same two lampshades above my bed but i had made the top shot just slightly off centre which gave that crescent effect. A slider on the picture gave the orange glow effect of the stippled ceiling a redder effect, so I am sorry but it wasn’t a ball of wool!!!!!

Today, I have a thumping headache, my fibromyalgia has flared up to such a degree i wish i didn’t have a body at this current minute.

So I am in bed, I need today to be over with. No, it wasn’t a bad day, it is just that I pushed myself too far. But how do i get through a day otherwise? I will explain in a minute.

So I took a pic of the lampshade again just now, a pic of Popeye and put them both together in a fusion type app, moved the slider a bit to change the colouring and this is what came up. Whatever it looked like it was going to get posted on Blip today.

I half like it!

I said a couple of days ago I had a remappping for my cochlear implant speech processor. It is completely different.

For music it is the best mapping I have had so far, although i have to listen on repeat for half the day on a particular song/piece of music to begin to pull something in from it and it to start sounding like it is something okay. That might not sound a good situation for many of you, but it is more than i have ever had before as regards music sound.

However, for everything else, there is one heck of a lot of stuff to get used to or make sense of it, and learn all over again.

I had been sent a link for a deaf society that it was suggested i go to. I haven’t in the past had much luck with deaf societies in my adulthood, because they have all been BSL based, and I was the intruder being brought up in the oral tradition (Sign Langauge was punishable by death in those days).

But, I had a gut feeling today to go. I completely forgot that i had been remapped on Monday and that I would have to get used to it. Yesterday Tuesday was spent listening to music all day and half the night, so that wasn’t really getting used to the new mapping as regards voices and stuff.

So today Wednesday I am going to the deaf society and I cannot understand why everything sounds wrong, so wrong, it was disorientating. Half way there, I remember I had the remapping on Monday. Okay, so this wasn’t my best idea to do today, but I am nearly there so I continue my journey.

i get to the deaf society. I understood it was a coffee morning from the link. Of course today had to be one of their four times yearly events that had to do with other issues than just being deaf. It was some inititiave that was being started, and the presentation was in a video, just in BSL (British Sign Language).

Oh boy i should have stayed at home. This I can do without. The group were all BSL users so that was me out of the loop. A stranger in a strange land. I nearly walked out, I didn’t want to sit through something I didn’t have a clue what it was about, I have done enough of that in my childhood at school etc.

Someone translated as best they could, so I was lipreading them.

Then the people showing the video wanted input from the deaf group every so often during the video. I kept quiet up to this point because i just did.

Then there was a coffee break. I watched the conversations of the others but couldnt follow much. Some of the BSL users were easier to lipread than others.

Now, I don’t know if this comment was aimed at me or whether i was being over sensitive. But the person said to another person in BSL, but he spoke perfect English for this bit, instead of the different English BSL users use. He said, ‘This club is for Deaf people, not for Hard of Hearing People.’

People assume I am hard of hearing, not profoundly deaf because I speak pretty well, I do not speak the speech of a deaf person.

Well that comment got my goat.

So we are in part 2 of this presentation. I watched intently because I was going to give input for the next bit...somehow.

I was working out how I could give valid input, and yet also bring in how I am excluded from both the Deaf world and the Hearing world, simply because I was not allowed to learn to sign or even mix with Deaf people when I was a child or growing up. I didn’t fit in the hearing world while I was growing up, I couldnt follow anything that was going on as I grew up. i could speak but not receive communication. It was very isolating.

Anyway, the video was stopped again for us to give our input. And i spoke my piece about the video, and how it related to not only BSL users, but to others who were born profoundly deaf but who were not allowed to learn sign language or even mix with other deaf people, so we were in no man’s land where we didn’t belong anywhere, and every effort, in my case, to join the deaf world in adulthood was rejected because the deaf groups said then, that they had grown up from school together and that they were a tight knit community and that I wasn’t welcome.

This put me in No Man’s Land where I was for a very long time.

Then I related what I had to say about the video that Communication Support had to be for everyone who was deaf, someone was signing what I was saying into BSL so the whole group got to see what I was saying. And i went on to say my problems with telephone calls that I have to make and I cannot do, which I have said often enough on here on Blipfoto.

Then someone waved to me at the other side of the room and mimed they would talk to me later.

I felt something had changed. The group seemed friendlier.

After the morning was finished, this person came over to me and said what she could do for me within this group. The service was free and she can make any phone calls for me for hospital/Doctor/dentist/anything to book appointments etc Everything I had been needing for communication which i have been having problems with in the hearing world she offered me and the service was free.

There was a whole pile more stuff that was offered - different kinds of communication support and she seemed to say it was all free - notetakers, lipspeakers, palantype operators, and more. I couldnt take it all in. So i have some stuff to do to register etc and i have started that process.

But when i got home i had pushed myself far too far this morning and my fibromyalgia has flared up so badly I can’t stand my own body at the moment. I couldnt sleep or rest. I have taken some more painkillers and stuff I can take. It is beginning to kick in now while i have been writing this post, so I need to go to sleep or lie down to rest in a few minutes.

However, it was a good day today. It was brilliant in what i achieved, and brilliant in what i got offered. I need to understand it better, but will do that in a few days when this fibromyalgia flare up has gone down. It is like being in purgatory when it is this bad.

The remapping on Monday didnt help me today, I still have to get used to people’s voices and all the other everyday sounds, so that probably contributed to the fibromyalgia flare up.

I should have taken it easier today, but I couldn’t because i was in the right place at the right time for someone to offer me all this communication support that I have been desperately seeking.

I found out today that there is very little support for BSL users in this area or even this county. A lot of the others in the group I was at today, travel most days of the week to other BSL deaf groups, so they could mix with like people.

But because there are so few of them, they have to travel great distances. Some were travelling up 100 miles round trips just for a 2 hour BSL deaf group coffee morning. It was the only way they could socialise. There was no centre like hearing people have where they can go to a community cafe where there are a lot of activities as well. And this was why some were travelling to Shrewsbury because there was some kind of centre there.

This brought in mind to me a video film i watched the other day. This film made me both angry and sad, both emotions were from my own personal experiences which would take far far too long to explain here.

Have a look at this film...i need to post this blip entry and then find the link to the film..so bear with me while i find it...

Found the link!

http://www.bslzone.co.uk/watch/zoom-focus-end/

I think it is worth watching. Click on CC and then English to get the subtitles/captions.