The Blog from Bressay

At the beginning I suppose.

At end of July had a call for the immediate family to come down to Edinburgh as Gran wasn’t getting any better.  So we booked on board the boat on Thurs 30th.  The Wednesday I had my DLA tribunal and was refused DLA.  On the Friday Martin and I split up.  Gran died a week later.  The following weekend was my sisters Wedding.  It rained on the evening of the Humanist ceremony so they had to hold it in Tyninghame Village Hall instead of the beach.  After that we went to Sister & now Hubby’s house for a buffet.  The next day was the Christian blessing, meal and Celiedh.  I even managed 2 dances, well two half dances.

Wednesday following the wedding was Grans funeral which Dad took, it was lovely but emotional and we had a wake thing after at a nearby bowling club.

I arrived back on Saturday.  Sunday I should have gone to Camera Club but had no energy.  Monday all the mail got delivered and found out that the DLA panel thought I was lying and quote “We are unable to accept the history which she proiveds as being accurate or genuine”   Grrrrrrrrr.  I’ve been livid about that all week.  I mean if I wanted to cheat the benefit system I’d think I’d come up with something less bizarre than having ME/CFS and a fainting condition.

Mam and Dad are on the boat tonight so MLS has been coming through to check that I’m ok.  I’m being a good girl and making denner for Mam and Dad the morn it was going to be broth but no broth mix so it’s now lentil soup and Mince for mains.  MLS and Jam have been great and such a great support to me I can’t thank them enough.

Tomorrow I’m off to see the Proclaimers with MLS and Jam.  Looking forward to that loads.

Monday I have an appointment with CAB to see what other benefits are available and to start applying for a Sheltered House.  It means that I will have my independence but there will be a Warden on hand if something goes wrong and I should get a home help as well.

Well here I am again after too long a break.

Things have been fairly busy here between on thing and another.

Sisters wedding is looming all booked for going away it’s just gettting booked for coming back now.  Looking like we’re coming back on the Monday after the Wedding so just need to rearrange that.  Martin should be coming back with us :D  which I’m really looking forward to.  The wedding will be over two days, the Humanist service on the Friday night with the Kirky blessing the day after.  Woody booked into cattery so I hope that he enjoys his hols.  Next week will be V E T time for him so jabs and a check up to make sure he’s doing fine.

Still need to get organised for the Orkney wedding but really looking forward to that as well :D.

Before we go away I’ll be quiet busy.  On Friday we have, or rather had, a meeting with the Chief Executive of Scottish Water.  Something has now cropped up so he will now not be attending and instead we shall be meeting with the Customer Service Delivery Director (where do they get these names from!?) and the Director of Communications.  We shall see how this goes and see if we can get any sense out them as to what they are thinking.

It was Mams birthday on Sunday so we had a family get together on Saturday.  Very enjoyable.  I made Chocolate Cheesecake for the occasion (seems to be my thing these days, making Cheesecake lol).  Mam had a great time which was really good to see.

This weekend MLS and I are heading down to Bigton to learn Spinning this weekend really excited about it.  I’ll probably hankering after getting a wheel afterwards.  Been looking forward to it for a long while now so hope that I can make the whole weekend and not just the Saturday.

It ’s been ages since I’ve been blogging so trying to think of everything that I’ve been up to.

MLS has updated you with the Water situation.  We’re still collecting signatures and found out on Wednesday that the Community Council will be putting in an objection.  The big Chief Exec is coming to meet MLS and I to discuss “our concerns” but has decided that he feels a public forum would not be any use.  How he came to that decision I don’t know.

Gran is now looking a lot better but unfortunately she now has an infection so she’s on more tablets.  We’ve still be seeing her on Tuesdays and trying to win the puzzles (the boys team are doing quite well the lasses will have to get their brains in gear).

Mam and Dad will be getting a new car next month with the Motability scheme so there has been lots of getting car sorted for that.  It’s a Toyata Corolla and they will be getting an Auris (I think that’s the right one).  She’s due in for MOT on Monday so fingers crossed that it won’t cost too much.  Mam prefers Toyota’s as she has Arthritis and find that they have higher seats which makes it easier for her to get in and out of.

Martin will be visiting next week!  Woohoo!!! I’m much looking forward to that. Not sure what day he is coming up will either be Monday or Tuesday he’s being a bit vague.

Last week we went to Yell to meet some friends and then went for a picnic.  It was a fairly nice day.  When we left Lerwick it was raining but stayed dry whilst we were in Yell.  We had an extra surprise - Killer Whales!  We were in the Wind Dog Cafe and were told that the whales were out so we all rushed out.  Unfortunately they were too far away and my camera doesn’t have a good zoom so no pics.  At 31 this is the first time I’ve seen Killer Whales it was great, I’ve now made up my mind I should visit Yell more often in order that I might get another glimpse of them.

We’re all booked and ready for going to my Sister’s wedding in August.  Because they have had to change all their plans I’m no longer officially playing but have been told to take the fiddle with me and my Uncle will take his guitar.  So if you’re in Belhaven in August watch out for the Musical Caravan!  No longer playing fiddle meant that I’ve had to come up with another present so we’ve decided that I’m going to do an Angel Card reading not your traditional wedding present but a very appreciated one.

This week was my Dad’s birthday so we celebrated that on Tuesday.  I made a Strawberry Cheesecake for him as I’d made one on Saturday and he was hopeful that I’d have leftovers from the picnic but it all went so I made another for him.  For Birthday Cake Mam got him one from the supermarket that was in the shape of a Champagne bottle that was a nice chocolate sponge and chocolate filling.

Tomorrow will be busy Auction at 2pm and I’m on the lookout for a desk for the bedroom so I can tidy up my computer, printer tower etc. Problem is that it needs to be fairly small but large enough to take Woody’s litter tray underneath.  Yeah I know probably not hygienic to have his litter tray in the bedroom but it’s a Ferplast covered one and we put it in here to make sure that he was close to litter tray when he moved up here as he spent most of the time under the bed.

Tomorrow night is the Midsummer Carnival.  Midsummer…. Carnival….. wasn’t Midsummer last week I hear you ask?  Yes it was but due to various things they are having it this week.  I know quite a few folk that will be in it so I’m heading across to cheer them on and if I’m feeling up to it will be going to a couple of pubs (if there is room to get in them) afterwards to celebrate friends birthday.

This week has been taken up with getting the campaign going against Scottish Water.  We’ve now got flyers, posters leaflets AND the petition up and going in the shop.  We’ve also said that if folk know someone that can’t get to the shop but want to sign we’ll come to them.

On the flyer we have details of who to contact to raise your concerns and also put in a letter that they can cut off and send.

Saw Gran on Tuesday wasn’t looking too good.  She fell out of her bed at end of last week so she has two black eyes and bruises and cut on forehead.  Was good to see her up and about for a bit even if she was drugged up to the eyeballs.  They explained that they don’t have the bed rail up at night as she goes to the toilet during the night so even if the did have that up knowing Gran she’d get over it.

Due to Wedding now being over two days and they are not having a parady/aisle thing I’m not officially playing at wedding, although my sister said to take fiddle down and Uncle is taking his guitar with him so might have a tune or two (this means we need a bigger repertoire eek!). so I’m sure it will be more practice, practice, practice lol.

Well have made trip down to Aberdeen and back again.  Main thing is that I don’t have Epilespy (which was kind of already known).  Other thing is I’m back on the Psychogical/Psychiatric roundabout again.  I’ve already been through this but they want to go through again as they think that my fainting could have a mental cause but they have ruled out panic/anxiety attacks.

Left for Sumburgh on Sunday after for the 17:00 flight to Aberdeen.  Dad took their car and drove Mam and I down to Sumburgh whilst Uncle had his car with girlfriend and Joe in it.  This was so that our car could be driven to Northlink Long Stay car park as Mam and Dad were back up on the boat on Monday night. 

The flight was lovely only 40 minutes as it was such a nice day.  We got a taxi from there to Red Cross House.  It was really nice and relaxing in there.  Mam and Dad went on the search for food so we had fish suppers courtesy of the Ashvale.  They were lovely :D.  After that it was in bed as early start.

Woke up Monday morning had a nice breakfast at Red Cross House and was taken by taxi to Aberdeen Royal Infirmary in plenty of time to be admitted at 9am.  I’d gone in by McColls on the way up and purchased a 1.5lt bottle of water.  We had some waiting about and eventually I was seen by EEG technician who then glued all the electrodes on to my head and shoulders and fitted me up to the box of tricks I had to carry around with me.  I was in my room by 11am.  In the afternoon I still hadn’t been seen by my consultant and while I was at the toilet I heard folk talking in my room.  I came out expecting to see the Dr but it was Martin!  That was briiliant.  Of course first words out of my mouth were “what are you doing here”  I was gobsmacked couldn’t believe he was there.

He stayed for a couple of hours and took Mam and Dad to the boat and then headed back down South to get to work.

Tuesday I had a faint but all my brain signs were normal so no Epilespy but they wanted me to see a Psychiatrist before I went.  Wednesday I was up and ready to go at 9am.  Had electrodes taken off by Acetone (Nail Varnish Remover to you and me lol) and then the long wait to be discharged began.  The Psych Dr turned up at about 10:30 and I was with him for an hour and a half and will be writing a letter for my Dr.  After that I was chasing up when I was getting discharged and eventually was at 12:30.  My escort from the Red Cross arrived at 1:30pm and we took the Red Cross Bus to the airport.  Got plane at 15:30 and was thankful I wasn’t on the flight to Majorca as there were 3 Hennies  and 1 stag party on board and while I usually enjoy these things I was just too tired for all the fun.  The best bit was getting back to my own bed nothing like it and I slept very soundly that night.

Mam and Dad were Polling Clerks on Thursday (I hope you all voted!) so I had a visit from my Uncle to check that I was ok and see if I needed any help in the cooking department.

The main thing I’ve been doing since I’ve got back is meeting up with MLS in order to get the campaign against Scottish Water going.  We’ve enlisted the help of a councillor who has been immesurably helpful so far and we’ve hardly even started.  We’re writing to the Bressay Community Council, the Shetland Islands Council.  Scottish Water and getting a petition up and running.  We’ve also written to Tavish Scott who has been great also.  Will keep you updated on all the events and happenings with this.

The beginning of the week was mainly spent in my room printing more months for calendar.  Finished one month and almost finished another before handing it over to one of the other members.  Then only the front cover to be printed and the printing part is done.  After this we will collate it into the actual calendar and then do the punching and binding.  I probably won’t be doing the latter stuff as I was on the printing group.

Also been getting things ready for leaving on Sunday to go down to Aberdeen Royal Infirmary for a two day stay in Ward 40 for Video EEG monitoring.  The Big Brother of hospital tests I’d say lol.  I’ve got new wardrobe for the occasion as I can’t put anything over my head so front fastening things ahoy!

Wednesday had the CAB meeting that was postponed from a a fortnight ago.  We’re getting everything ready but still no word on when the actual Tribunal will be.  The thought at CAB seems to be July now if it is then it was be shy of a month to the year that I actually put the application form in.  I’m hoping that becuase I’ve had to wait this long that there will be good news at the end of it.  Because Dad was preaching at Edward Thomason House on Wednesday evening they left me at CAB and headed back to Bressay.  On Parental instruction I was then “looked after” by my Uncle and my Brother, although sometimes it’s me looking after them.  We had a lengthy discussion about who should take over at Aberdeen and then heard the breaking news on Sky Sports that Celtic were looking to speak to Owen Coyle which completely bemused us!

Before my Parents dropped me off we all went to the library.  Dad is still reading his book so had a perusal of other ones.  Mam went to look for a book on beetles to try and identify the one that we had in our house.  I got three books: Sputnik Caledonia by Andrew Crumey, Franny and Zooey by J.D. Salinger & the Unadultared Cat by Terry Pratchett.  I’m a huge Pratchett fan and had said I wasn’t going to get a Pratchett book this time but saw the cat one and had to get it.

Yesterday was getting clothes washed and dried so I had underwear, trousers etc for going to Aberdeen.  Last night MLS and myself went to the Scottish Water “Consultation” in the Bressay Hall.  Scottish Water are proposing to pump water from the mainland of Shetland over to Bressay and do away with the supply on the island.  Not really impressed with the “consultation” yesterday but as per usual in order to get real answers we had to press them to get them.  I still don’t see the need to pump water from the mainland to Bressay.  Because of where we are the pipe is certain to break as we found out when they laid the electic pipe to Bressay at the North Mouth of Bressay Sound, where they are proposing to lay the water pipe.  They do have a contingency but have not really answered about how long it will take to repair.  Water Quality does remain one of the big issues but the other is that it’s an amenity that is being taken away from the island.  Although I do understand the cost issue I still think we’re not getting the full financial picture as regards the financing of both schemes.  We were given a carefully worded leaflet yesterday and have gone through and a lot of questions have been raised by doing this.

We’re really opposed to this so we’re going to do something about it and get the community joined in.  A lot of people are against this but the majority don’t know where to start (and some are just lazy).  It only takes a couple of people to get the ball rolling and hopefully we’ll get to keep our lovely water.

BTW if you know anyone that is served on their island by a mainland water connection I’d love to hear their views on how it is going for them.

Thanks in advance.

Now being on a few forums lots of people want to build on the success of this year. 

This years winner could sing, plays a musical instrument and knows how to crack a joke.  I was pondering on the equation for this when it hit who SHOULD be representing the UK next year - Donnie from Dotaman!!

He’d be perfect!  So what do you think?  Ok when watching Dotaman as a child had no idea what he was saying but me and my brother were still entranced and managed to learn that cayher meant four (OK can’t spell, hopefully someone might be able to help me out there) from the parrot and clock bit.

I’m thinking if that doesn’t go down well how about a duet with Alf Poier from Austria who was in the Eurovision Contest in 2003?

I’ve been ill, yes again my immune system ain’t what it should be lol. 

It’s kind of been all go here in one way or another.  Friday had CAB appointment, or rather I had CAB appointment up until 12pm when CAB called to postpone.  I was very grateful for that as I was in no way able to function that day.  Another ‘phone call came in the form of my Uncle who had called to tell us that he had had to get 9 stiches in his hand as they’d been moving the boat and there was an accident.  He’s a very, very lucky person to only have to have 9 stitches and nothing more.  3rd ‘phone call Aberdeen Royal Infirmary.  They’d sent the wrong forms I’m only going to be monitored for 48 hours now woohoo less cabin fever.

We had folk come over on Saturday afternoon.  Was supposed to go up to the croft with them but I was just not well enough to go and did not want to be out of sight of a toilet.  They came back here and had a few drinks, a natter and tea.  Saturday night - the big one!  Eurovision!!! OK I know I’m a weird individual but it’s always been a family thing in our house and we do love it.  I was so pleased that Norway won, I couldn’t believe the points margin.  It made up for Aberdeen losing against Rangers (OK it didn’t but I’m trying to persuade myself it did).  I’m hoping that I may be able to get tickets for next years Eurovision and actually be there.  That would be brilliant but don’t make me choose between Aberdeen being in the final of something or going to Eurovision.  I may explode with indecision (I’ve pretty much been exploding most of the week)

Sunday thought I would try the AGM of the Camera Club as it’s only a 2 min wheel down the road and toilet on hand.  I am now Secretary of said Club.  I asked if anyone else wanted to do it and got the response well you’re taking the minutes due absence of other secretary.  Dammit remind me not to fill in for Secretary at any other AGMs lol.  It was all going well until I left when I got out of chair to get a lift back home as it was pouring down and unceramoniously ended up on the deck having fainted.   Needless to say I was a tad wet when I came round.  I got home and went to bed.

Monday was spent in bed downing varying pills and wondering what the side effects of taking so many varied would be. 

Yesterday off to Drs in Lerwick to discuss going to Aberdeen and see if he been informed correctly or not and to see if he had any clue to what I had.  They had given him the correct forms and I remembered to ask for the Travel for me.  I got a diagnosis of possible Gastroenteritis and virus or just virus.  Just keep taking what I was taking (co-codamol for fever & sore throat, Ibuprofen to try and get glands down and Immodium Instants for the other bits)  I got out of Drs in time to make 3:30pm ferry back to Bressay congratulated myself on a job well done and then it struck me and and audible “shit” was heard by my parents in the car who wondered what had happened.  I forgot to get my repeat prescriptions while I was in there.  Doh!! as Mr Simpson would say. 

We didn’t get to see Gran yesterday as her Arthitis wasn’t too good, she’d had a bad night so wanted a lie in.  There are now quite a few more using Moose in the Hoose’s services in her home.  There is now another link to Australia, one to Canada and I think the other one is to Peterhead so it’s all busy on the computers there.

Today I’ve felt a bit better so it was time for “the feeling a bit better bit”.  This involved putting clothes in washing machine, clean sheets on bed and shower for clean me.  It does make you feel a whole heap better psychologically I find when you do these things.  Might not help as much physically but I find I feel less yucky after doing that.  I’m now going indulge myself in drinking some more water.

I posted this elsewhere and had a quite a few emails & IM’s about it so I’m posting it in other places in order to hopefully help a few people and open peoples eyes up:

Since it’s ME/CFS Month and specifcally week this week it’s made me have a think about my situation and including the whole fainting thing. The below is based on my knowledge of things and how I’ve been treated.

I’ve told quite a lot people about my condition and the people most ignorant of it seems to be the Drs (although I’ve got a really good one at the moment). Like many things in order to get a diagnosis most people have to fight to get it and when I say fight I meant FIGHT. There are very few people that manage to get a diagnosis without fighting. It took me quite a few years to get mine.

What hapens after diagnosis? Mostly nothing. You can get referred to various places, there are a few ME/CFS clinics but I and a lot of others have not been able to access them. As well as the ME/CFS I had the fainting as well so first place I went was to evaluated by a Psychiatrist who told me that I obviously couldn’t be that ill as I’d made it to the clinic, doesn’t matter that I fainted afterwards or had to spend the rest of the day in bed, I’d made it there so obviously OK.

I’ve lost quite a few folk that I thought of as friends mainly because I didn’t go out and party with them as often as I used to. I became a drag because I fainted the whole time so I “ruined” thier night or I cancelled at the last minute because I just didn’t have any energy to go. It became easier just to make up an excuse not to go and isolate myself. Conversely there are people that were just aquintances that have become very good friends and there are also true friends that have stuck by me and helped me out innumerable times.

What’s the point in this rant? Well think about folk that you know that aren’t well or you haven’t seen for a while. As an aside just because someone looks ok doesn’t mean that they are. Do you know how often people with “invisible” illness get “Oh but you don’t look ill”? I do have to stop myself from saying “well yeah, but you don’t look like an ignorant bastard/bitch”

For many people having to explain their illness and how they live from day to day can be hard but for a lot of people The Spoon Theory cetainly does help. With illness like this how you feel can vary from day to day and even minute to minute. I know I can be haring about like a blue arsed fly for a day or I’m just too ill and need a week in bed. If you do know someone that has an “invisible” illness just a quick phone call can cheer up their day, just five minutes maybe arrange to meet them. Yes there is a chance they may cancel but it’s not like they are doing it on purpose just to piss you off.

I’m not wanting to start a chain letter thingy but if you want to pass this on to others please feel free especially if you recognise any of the above in relation to your life.

It’s been lovely this week lots and lots of sunshine (although still had a bit of a wind with it some days).

At the weekend I got a letter from the Aberdeen Royal Infirmary informing me I’d be staying a business week with them (Mon - we think Fri).  I really want to get things sorted out but can’t until I see my Doc next week and see when I’m going to get discharged.  Mam and Dad will be going with me but won’t be staying as they are both Polling Booth Clerks for the European Elections.  Martin is coming back up with me whenever I get discharged. 

Didn’t see Gran on Tuesday again.  Dad did for a few mins.  She’d had a lie in and by the time they had finished with other webcamers it was time for Grans dinner.  Went out to enjoy sunshine on Tuesday at The Peerie Shop Cafe and had a lovely couple of cups of Peppermint and Liquorice Tea.  If your into your herbal tea I’d highly recommend it.  It was lovely sitting outside in the sun and chatting to folk.

Wednesday I had a day off as I’d been out Monday and Tuesday and have a busy couple of days coming up so I needed the rest and had a mainly bed day.  I was supposed to be going to Community Council but I knew if I did there would be trouble after.  The Clerk is next door neighbour so I’m going to see if I can get the minutes from him to peruse.

Today I’ve been practising tune for Sisters wedding coming along nicely and thinking of seeing if she wants to me to play Ode to Joy as her and her man walk back down the beach together.  Also been doing a bit of chucking out and cleaning.  I had to rescue escapee sock from hoover but all ok in end.  I’ve been trying to clean our white, plastic furniture and have found out the reason it’s not cleaning up.  It’s been outside for far too many winters so the newer ones are coming up good but other not good I’m afraid will try and persuade Mam and Dad to put it all in the Shed this winter (PS if anyone wants any boxes we have loads looking for a good home).  Woody has not had the best of days between strimming, fiddling and hoovering.  He’s hoping for a far quieter night.

The Chinese is coming across tomorrow night again.  Trying to persuade Mam & Dad that it would be a nice idea and have a night off cooking.  Still working on it though.  I’m also off to the CAB in the afternoon to sort the stuff for my submission to Tribunal out, still not heard when the date will be.  If I had to put a bet on it will come up when I’m in Aberdeen!

Saturday we’ve got folk coming over and hopefully the phone that my brother ordered from eBay will have turned up.  Sunday it’s the Camera Club AGM.

I’m hoping to get more washing out very soon as I’ve managed to get one load on but I’ve been thwarted by folk getting to machine first and other folk strimming the grass.  Tomorrow I shall get to machine first and there will be no strimming.