Early Start

Well I had to get up super early today, again tomorrow but I'll get to that, as I had to take my youngest nephew to his Primary School early AM for the pre-school Christmas party. I was also mean't to take the middle boy to his Primary School beforehand but he seems to have come down with the stomach bug the youngest had at the weekend/earlier this week.

So with one boy home ill, another going into hospital for an operation, we had to take my youngest nephew super early before school to get him in in time for the pre-school Christmas party. Esp. after he missed the other Christmas Party his brothers attended that he couldn't because of the aforementioned stomach bug.

Now as my brother and his wife are returning to work tomorrow I need to get up super early again and get to their house prior to them leaving for work because the district nurse is coming sometime tomorrow to change the bandages on my eldest nephew's feet. No idea when tomorrow but given his incapacitation we can't move him afterwards or leave him alone while attending our own planned trips.So they have been delayed a day.

Also we might have my middle nephew to look after as well if his stomach bug hasn't settled down. So we might have 2 ill/injured/incapacitated little boys to look after. Also my brother's broadband is almost out of bandwidth for this month so I can't go online at all so there goes the plan to take the laptop or iPad to pass the time. A long day looking after a possibly cranky boy. Not that I would blame him given the pain he is in, if there is anything I know about is being in pain.

So my brother has packages for Christmas being delivered to our house so my Father would have to stay in at our house in case they arrive tomorrow.

So our plan to go finish our Christmas shopping and then do our grocery shopping is out and we will have to get up early Saturday to fulfil them. As Sunday we have our large Christmas shop to do at the supermarket, and Christmas Eve is spend cleaning and preparing our Christmas meal.

Day Late or Early?

Well I got my Citylink deliveries this afternoon. Both arrived together. One original due Monday and the other yesterday (Tuesday). So they are both officially late but the one I had to reschedule although it was due Monday it came out a day earlier than the earliest rescheduled delivery date they gave me yesterday.

I think that they were putting the second order out today to be delivered and someone realised there was an order rescheduled for Thursday for the same address and sent them out together rather than come to the same address two days running.

I suppose I should consider myself lucky that they didn't hold back the second package another day to fit the rescheduled date given.

Other news, tomorrow is a super early morning for me, my two youngest nephews will be dropped off well before 8 AM as the eldest is due into the hospital at 8 AM and we are a distance away from said hospital esp. during morning rush hour.

We have to give them both breakfast and drop each off at the relevant primary school. My youngest nephew isn't normally due in the AM class but tomorrow morning is the Christmas Party at the pre-school/nursery so we have to drop my youngest off by five to 9 AM in the morning. So the middle one will be dropped off around quarter to/ten to 9 AM and get to the second primary school by the five to nine for the start of the party.

My eldest nephew is due into hospital at 8 AM and is undergoing an operation of his big toe and both his parents are attending with him. Not that I blame them, I would do exactly the same in their shoes. So we have to go back for the youngest around 11.30 AM (just the same as last year when we did the same routine for his Christmas Party then) and there is a chance we have to go back in the afternoon to pick up the middle one after the end of school at 3.15 PM.

We will have my youngest nephew in the afternoon rather than the morning tomorrow and he's still not eating much. Poor love is suffering from a bad stomach virus, he just got over the flu a few days prior to getting the virus.

So that's about all that happening tomorrow.

Today we went to the cemetery to put down the Christmas wreaths on my Godparents and Maternal Grandparents graves. Just our way of including them in our festivities although they are no longer physically with us.

It's Here

At long frigging last people!!

Argos delivered my Nook Simple Touch with Glowlight today along with the Argos order I placed for my Mum on Sunday. Argos must of decided to deliver both orders at the same time, the second order's delivery scheduled day. Pity they didn't figure to inform me of the change of delivery date for the Nook when they did that and I wasted an entire day waiting in and looking out for a delivery van arriving. I had my blinds open till quarter past eight last night without reason, we prefer on cold dark nights to close them darn things and try to ignore the approaching winter season as much as possible. We feel the cold we don't need to see the accompanying darkness.

A Break

No I'm not taking a break from blogging, I am finally getting more than a couple of weeks intervals between therapy sessions. My physiotherapist on Wednesday has given me a month's break before my next check-in with him. He also said if I don't deteriorate any when I come he will probably discharge me with my regime of physiotherapy.

So good news there. My OT which I attended on Thursday wanted to see me in 3 to 4 weeks but said she was booked solid for the coming month as far as she knew so it would probably be around 5 to 6 weeks before I got a appointment to return.

As the receptionist who makes the appointments had left for the day by the time I walked back to the reception area we pushed the sheet the therapist gave me through the glass windows for her to get the next day and send out an appointment to me for my next OT check-in.

I have gotten myself a small pocket camcorder, a Kodak PlaySport ZX5, which Amazon had on sale for amount 40% off RRP. I also bought a 16GB SDHC card, a tripod (gorrilla pod), a pouch as well as a remote control (which is still to arrive, next week sometime according to seller).

So I seriously using my cam to do a video diary of my Fibro/RA/Carpal Tunnel etc., so that when I return to the OT I can accurately tell her how I got on with the hand splints she gave me as she asked me to last time. As I have extreme difficulty writing or typing I find that either audio or video records to be the easiest way to adequately keep track of my various aches, pains and difficulties.

I also got the cam to allow me to vlog my book reviews, this was my main reason for wanting one to be honest. I have fallen terribly behind in my reviewing as I couldn't handle the hand and wrist pain that typing up reviews was causing me. So I thought I could record my review, upload to a free service like YouTube and embed the review in a blog post.

I'm still learning to use the cam and trying to find the best quality, ease and resulting video at the moment. I'm using the health diary I am recording for myself as a way to get used to recording videos. I have found that I have extreme difficulty keeping my eyes trained on the camera lens and not wandering all over the place. That said I do this is real life and find it hard to look directly at people while speaking to them, so it's not just a video/cam problem, it's something I do a lot in real life.

It's actually a form of fibro-fog as I struggle to concentrate.

Well, my hands and wrists are starting to hurt again to I'll sign off here. Maybe I'll even post a vlog post here, who knows?!!!

Camera Here

Well the Kodak pocket (handheld) camcorder I bought arrived today, along-with the tripod I bought but the memory card I ordered at the same time has only just now been dispatched from the Jersey 'partner' of Amazon and estimated delivery not till Saturday at the earliest. As the internal memory in video mode is only 12 seconds - yes you read right seconds, not minutes - I can't really test it properly until the sdhc card arrives.

I've completely charged the device which took around 3 hours to do roughly, set all the relevant details into the settings and checked it sits on the tripod correctly. But unfortunately 12 second recordings can't really allow you proper testing time.

So my practice with my camera is on hold till the 8GB SDHC card I bought with the camera arrives from IndigoStarfish. Something I've found with this 'partner' company is that any orders sent to them even when an item is in stock takes at least 24 to 48 hours to be dispatched and several days to actually arrive. Rather false advertising to say next day or 2 day delivery on items farmed out to them on the order pages.

But nothing to be done for that. The price alone for the right class of card, and avoiding buying a cheap knock off from a less than scrupulous seller, I figure waiting 4 days at least for the card from Amazon themselves is better than chancing spending the same price on what could possible not to be the correctly provided card type or size. Something I've seen happen to many people buying memory either through sellers or on ebay.

I got a month before I'm due back at the PT and if I haven't deteriorated, stayed the same or even slightly improved, the PT says he will discharge me from regular check-ups for now with the exercises I have been given for my shoulders.

Confused

So my Dad has been speaking to relatives who know of disabled people who have had walk in showers in upstairs bathrooms and can't figure out how the OT told this morning that they don't.

Leaving me with two options, move house to a place where there is a downstairs bathroom or attempt to get planning permission from the council to install one. Both very expensive options that are beyond our grasp.

I believed a split level shower is just a fancy say of saying walk in/sit down shower in one of those little cubicle's you see in all the advertisements.

So, I'll just have to see what my OT @ the hospital says. Maybe she'll know how a 'split level shower' is different from a walk in shower that has been installed in many an upstairs bathroom in my area according to those who actually had it done or know someone who has.

Again With the Goals

Well in October when I briefly saw the OT at the hospital she asked me to compile a list of my top 5 'goals' I wanted to work towards through therapy and aids when needed.

I hate these goals.

Why?

Because I can never come up with anything and have no legitimate idea what she wants me to say exactly. When asked yesterday at the 90 minutes assessment I went through all I could come up with was regaining control of my personal hygiene. She asked for other goals and after a few minutes of sitting blankly staring and scrambling mentally to come up with another goal. Any other goal but finally had to admit I couldn't think of one single thing presently as my mind was totally drawing a blank.

So again she wants me to think and compile some other goals for my next appointment which should be sometime in the next month.

I've goggled, I've searched all the various health related blogs and forums I visit, but still drawing a complete blank on that front.

I'll just have to ask her what goals is she continually asking about. I was referred to gain help with my seriously degenerated condition from my specialist. I knew I needed help either through the use of aids, therapy or probably both to help me regain functional independence which I no longer have having to rely heavily on my Mother as my carer on a daily basis.

I can dress myself, if I wear 100% stretchy clothes which don't require me lifting my arms too high and can get on and off using my one relatively 'good' arm. I can with struggle make my own bed which really only relies on me tidying up my duvet over my mattress. I can't however change the bed clothes just straighten them up when required.

Yes, I can use our hoover, just because we bought the lightest one we could find which I can use sitting down on my bed to hoover the limited carpet area left inside my bedroom.

But that's about it. Showering, hair, cooking, making drinks ... etc., etc., etc., require some-else to do the actual work for me.

So apart from helping me regain the ability to take all aspect, or most of them anyway, for personal hygiene onto myself all I can think of was gaining the ability to maybe cook a simple meal rather than only being able to make myself a very very simple snack. Which is my current ability.

So apart from hygiene, cooking and making myself a hot drink that's about it for goals that I can think of. All important to daily tasks. Also help with doing heavier shall we say house keeping tasks might also be required along the way but apart from those I draw a blank. I'll just have to ask for examples of these apparently important goals as I have no idea really waht she asking me for.

Panic Stations

Well we've just spent the last 20 minutes hunting down my letter with the correct time, department and therapist for tomorrow. As this is my first Occupational Therapy appointment I really need it to make sure I get to the right area at the right time tomorrow at the hospital.

Finally after that brief panic I figured my Father had moved the letter and not told us, needless to say he had forgotten all about moving it let alone where he had moved it to, I just took a chance figuring as it was sitting under my Kindle on my bedside cabinet since it arrived that he might have moved it to where he has habit of moving my Kindle when he mucking around with the stuff on my cabinet.

I must admit not to being looking forward to my OT appointment, mainly for two reasons:

1. I'm suffering from a cold and the freezing temp - snow expected by this weekend - isn't helping. So I'm feeling more listless, stiff, exhaustion than normal.
2. This appointment being the first can last up to an hour like my first PT appointment just prior to Xmas and also it's at the main hospital which results in a long long long walk in from the main entrance compared to when I attend my PT. Even though the room my PT uses at the clinic is quite a distance from the reception it's nothing compared to the distance I have to transverse when attending the main hospital for appointments.

Shh ... trying to sleep here

Well, I'm exhausted and it's not even 7pm. Nothing unusual for me normally but at have just cause today.

After getting up slightly earlier because I knew I would have to take my second round of medication prior to doing the nursery run because I wouldn't be back home in time for when I usually took them.

More Good News

After my 'good' day yesterday with news on my health/situation I received a letter from the hospital. Initially I thought that my specialist appointment at the Rheumatology Clinic had been delayed/changed but no, it's finally my appointment with the Occupational Therapist. It hasn't been forgotten, and definitely a load off my mind. I was going to bring it up on Monday when I have my next Physiotherapy appointment to see if he (therapist) could help me chase up the OT appointment for me as I was beginning to worry I had been forgotten.

Only bad news is that it's on a Tuesday at 11.30am, good time frame for me, but unfortunately Tuesdays and Thursdays are the two days I help out my parents with looking after my youngest nephew and take him into nursery at lunchtime. Also Tuesdays tend to me when I have to pick up all three boys from schools because both my brother and his wife often have after school meetings to attend.

I'll phone Monday morning to see if I can get the same time frame but on Monday, Wednesday or Fridays.

Getting Ready

It's almost 2.30pm still no sign of the City Link delivery and I'm off to get ready for going to my physio appointment at the hospital.

Glad to get home afterwards. Hopefully both my delivery will have arrived and my three nephews picked up by the time I drag myself home again.

I'll be glad when Christmas Eve arrives and all shops are closed, all presents wrapped, all shopping in and I can finally relax for what seems like the first time in forever ............

Frustrated

Between lying courier services who say they attempted delivery two days running when they didn't and I have at least 3 adults to prove so and relatives who expect me to drop everything and act as an unpaid taxi service I am frustrated and totally fed up.

Appeal Going Ahead

I have a post written on my positive experience on the WFI I had to attend last Monday, exactly a week ago today, which I will post once I have access to my tablet which it's on but today I got another letter from the DWP about the appeal I lodged a month ago.

After my relief about my WFI my good mood, and relaxed deposition which has allowed me to actually achieve a few  hours uninterrupted sleep which hasn't happened since this whole WCA review began months ago, has come to an abrupt end.

My nerves are once again shot and building up as I now face an appeal process which could include an ATOS medical and a firing squad face to face appeal to the DWP and whoever else attends such boards.

I got a letter just an hour ago saying that the decision maker at the DWP had looked again at my WCA and other documents that he used to make his initial decision taken into account the points I made - which is ludicrous as I meet the first descriptor on their own paperwork for the ESA Support Group - and can see nothing that would make them change their decision.

So apparently meeting one of their own noted descriptors for the SG isn't good enough to allow you to actually be placed into said group?! Sounds about right for this whole process which is supposed to be fair and give help to those who actually need it.

No time limit, no information on how meeting one of their holier descriptors wasn't enough evidence to get moved into the SG, nothing except my appeal would now move onto the next stage and I would get more information on the appeals process later. Again no time frame or anything.

I had hoped that if I didn't meet the descriptor I would be informed how I didn't regardless of my proof that I do meet said descriptor.

So my happy relaxed period is now over again. I had hoped that I could now enjoy at least the coming festive season without the pressure and depression that this whole process has brought onto me but alas that is not to be. Every time I feel I can relax a bit and concentrate of myself and my health when I overcome some hurtle thrown in my path something happens to scupper it. Last time it was the less than 24 hours that came between my lodging my appeal and my WFI interview date/time arriving. This time I got a whole week where I didn't suffer nightmares, depression and nerves before I now get this appeal hurdle - my biggest hurdle yet - thrown in my path wrecking any inner peace I've achieved in the past few days.

GRRR...

My mother who is attending this stupid WFI with me first thing Monday morning is insisting on washing my hair tomorrow so I can be 'all neat and tidy' for my appointment.

I'm not so fussy to be honest. My hair is clean and non greasy and doesn't need it in my opinion and as I pointed out to her the more effort and dressy I attend as could backfire badly on my claim as I can't do this for myself, let alone on a daily basis as mentioned on my claim forms and turning up like I'm attending a job interview would be misleading on my actual circumstances.

But she's insisting that's better than showing up scruffy - which I assume she's saying my normal appearance is - will make my advisor think I'm too lazy to dress as I should when attending appointments.

Can't win, can I?

As I am relying on her to accompany me as a witness as well as support I have no chance of changing her mind. I will get my hair washed regardless of my physical condition tomorrow but I am intent on dressing only in my usual comfy clothes as regardless of the terminology my mum uses this isn't a interview that I see necessary to dress up for.

Especially if I can be expected to sitting in an uncomfortable chair for an extended period. Something I am unable to do in the most comfortable of chairs let alone those found in JCP offices.

Well I've moaned enough about my appointment on Monday for today, one last thing to mention before ending my posting for today. I got an appointment through for the physiotherapist today, no sign of any for the occupational therapist yet. Rather stupid to send a physio one through before I'm fully assessed which was supposed to be this month in a dual appointment with both therapists together where a therapy course would begin to take shape before I started the actual therapy courses.

But then this first physio isn't till December the 22nd so there is plenty of time for my dual assessment appointment to be sent through before my first physio date arrives.