2019 in Joanne's Dorm

I usually write year reviews on blogs around this time and I have already done the one for my main adult little girl one  already which I don't feel that much of a need to boilerplate over using a printing term to this blog.

This blog as you may of noticed has had something of a make over and one area has been writing about my times away and as this blog was always originally about my emotions, what I felt about it, how I coped because I'd be lying if I didn't say I find situations  at times trying especially anything new.

This year I built in what I had been doing the previous year being more physically active, exercising my abilities to focus on things and recall which is something I struggle with because if I don't then quite simply I lose out by not being able to enjoy things.
The fact it is out of doors is a bonus for taking in fresh air, maintaining muscle strength which I'm lacking in and cultivating some hardiness in me.

I also talked  a little about age regression on here because it  it is the main aspect of my life, what it is, how you may present as an age regressor, how being younger than your years leads to a need for oversight and for want of a better term, parental input and structures some of which do include spanking which I have spoke of although it's not a 'spanking blog'  with honesty.

I also talked about things like having a full on disability assessment that has made a big difference to my personal situation as my full set of needs has been recognized which has been a burning point ever since in my mid teens the differences between me and my peers become increasingly obvious. Age Regression is a coping mechanism that places me in the appropriate setting to have independence with support.

I also talked a a bit about my personal beliefs and values too.

The other big thing was I had discovered my no longer operable original Fur Affinity account actually was - one can only assume the database got repaired at some point after I'd made a fresh account up so I decided to use that fur just  venting around things that may go down so well on the main account and certainly there as nothing to gained from moving accounts again as you can't transfer your journals and that over easily and talking around spanking.

That I think were the themes that were looked at on this blog in 2019 and it maybe some might be revisited although Tumblr's antics remains constant for now and I'm not having issues with what I posted even though there are somethings I would like to.

Being messed around again part 2 - result (of sorts)

You might possibly remember me going on about assessments recently and in particular the Personal Independence Payment that I was more or less forced to apply for in February as I was informed if I did not my existing Disability Living Allowance would stop.
This is because they decided to scrap the benefit for new claimants and force everyone to reapply from scratch rather than just migrating over, reviewing as necessary.
The process was and is long-winded with having to apply by phone, complete a form within a month and then wait for an assessment which for most people would of been at a premises rented for it but for me was a home assessment.
Well eventually I received a letter from Department of Works and Pensions who in the almost fictional separation of hired out assessors and their decision makers making them, they have decided to award me enhanced Daily Living and enhanced Mobility in a massive well stuffed envelope which has been made 'ongoing' which is way of not expressly saying indefinitely or for life but really means "we can't see you improving but we will  play to  the notion of Lazarus style recoveries for the public by giving you a date we'll check on it (but we won't do much other than confirm you're the same or worse) in ten years time.
This is significantly better than my original DLA award more inline with how I'd assess my needs although looking at the scoring they put nothing down for communication, stress, anxiety and making my own plans.
I could argue with that easily but in reality had they of put them in it would not altered the awards by the scoring points system because I knew I was at least standard Daily Living and potentially crossing into advanced and while they missed out things around help with every day life activities such as  planning, getting out which really would of given me around 4 or more points at least, they give me top points on Physical Disabilities such as getting up from a sat position and how far I could walk without needing to break off ordinarily  and so on and which were observed.
Given the overall result I feel just accepting it faults an all works as large chunks are covered and in the end the kind of support I may get to deal with these things will be down to me so I can always build in in the missing bits.

Assessment Two done (and hopefully fixed)

Today is a day after a Employment and Support Allowance face to face assessment which was quite late in getting started as they arrived with notionally only fifteen minutes in a two hour slot remaining and with a hungry migraine ridden me feeling nauseous yawning my head off.
Ideal test conditions, what?
I had worked out this wasn't a suspected benefits fraud appointment but the lack of procedural appropriate communication wasn't helpful which reduced the options to periodic review with seven days notice cos we can or a post Sept 2017 look into whither having accepted you can't be supported or retrained into work easily actually you haven't a hope in hell of EVER doing so and so save them reassessing you periodically.
Fun started when the person who was a bona fide Doctor working for the company asked me to fill out an evidence form to say I had proved I was me so I had Mom fill it out as I can scarcely  bloody well write with a pen and just put a squiggle in the signature box as my hands were off.
That helped!
He then asked for my many and overlapping medical conditions so I gave him print out  of them that was in the April 2017 form and showed him my medication
I then spotted something familiar, the WCA50 form I'd got done a paragraph a day from that year so it obvious what the game was - assessment on a two and bit year old form - that as it happened I had a copy of key bits of and knew back to front having revisit it to reword for the PIP claim I was forced to make a few months back.
So he just explored not questioning each bit so I just went back over tossing examples with prompts from my folks (who tossed some stuff in back up the shortly word but chilling descriptions of how I'm severely disabled and how I need tons of help with all the why bits ticked and added).
As I was migrained out we skipped standing and walking just testing grip, arm, neck, leg muscle strength) which I was 100% confident would confirm what I had said there are clear and real limits and weaknesses showing him my inflamed shaking paws that would match a medical diagnosis.
He then left.
I'm reasonably confident the claim for ESA will stand and have met the phrases ("Descriptors"  for being treated as untrainable and supportable for work and quite likely to remain the same forever as it can't improve over time and isn't responsive to any upcoming treatment.

Not a good week

When things seem all over the place all you want is coffee, cakes and candy at  least in my experience wrestling with a lot negativity, worrying uncertainties and having to see strangers for assessments that I didn't actually ask for.
Like for instance after the assessment for PIP which whatever can be said of the methodology around it you can see if you apply for something you may well expect some kind of assessment but when you think you got head around that you receive out of the blue note to say you WILL be assessed in connection with you with a long tick box of benefits they tick Employment and Support Allowance not from the people who administer the benefit  but from the assessment company with a very generic explanation applicable to all benefits they assess of what a assessment entails and why you may be having one you do wonder what is going on.
Normally the people running the benefit write to you reviewing you claim sending a cut down version of the original form which you fill out from which they do have the right to send your for an assessment which is logical enough but at least you know why that is.
The last one of those I had was in April 2017and they didn't send me for an assessment but this time I have the form say I AM to be assessed but no real explication of why you may begin to understand why it is with my mental health issues such poor communication practises only make me ill.
Sufficiently ill that it required me to see my doctor for both the impact on my Anxiety - shaking, being unable to sleep, going through every possibility in my mind - but also bringing with a severe migraine which is something I've had since at least seven as I can recall.
That resulted in some tablets to trial for the migraines and some information and advice on managing anxiety, specifically social anxiety. 
It kind of undermines you that I have things I could read, listen to or play but I just don't have the inclination to just feeling like rolling into a ball to be honest.
I've been out on walks for a bit across the week, watching the birds, keeping an eye on what's growing and what isn't as some of the fields seem to be dried up on places not from sunlight but more lack of rain and meeting with dogs and their owners although Orson the literary cat does try to lock me out.

Stuff on my mind

There is much that is on my mind like sorting some of my things out since having a few new clothes and books that have to be fitted in some how into this room otherwise their could be ouchie trouble.
We have that election thing this Thursday taking place that I'll need to make a point of walking down to to vote but the biggest thing on my mind has been that Personal Independence Payment business which resulted in a letter last week to say they'll be coming out to do a personal face to face assessment next Wednesday.
This means Mum needs to be with me to try to answer whatever it is the so-called Health Professional might ask questions about  while we try to remove things like the grump from the scene as he really doesn't know that much but has the tendency to interfere saying things that that either not wholly true or  doesn't  actually know  which you'd then need to correct in front of them.
But then we don't know what they'll be saying or if they are either telling the truth or got it wrong cos they don't say as they pretend to gather evidence someone in DWP looks at to make a decision.
Still whatever happens it'll be fought.

May bank holiday report

This week we're talking about something a bit different, mainly colouring as that's what I've been doing a fair bit of across the weekend to relax as sometimes I get rather anxious apart from find it helps with my hand-eye co-ordination and leaves me feeling more in my natural little space.

Before I'm off again I need to remember to get a new colouring book as I've almost finished this one.
This does lead into the area of things that can only happen in littlespace which occurred with me which is of course pencils do wear down for which we have pencil sharpeners but with my grip having to sharpen most of them I struggled.
While doing that I had friction burns and a nasty blister that stung for hours making hard to do stuff like eat.
The other thing was connected with the tv as most programs come via a massive roof top antenna and it goes to box that boosts and sends out to all the tv sets.
On Sunday we had as many did here in the midlands torrential rain, thunder and lightning and it blow up the box that distributes it resulting in partial loss of tv with only the stronger signals coming through.
Repairing that, the person who looks after it falls with a loud scream and sends a glass object flying at speed from the loft space to the floor that naturally enough breaks into thousands of pieces to sweep up.  
Trouble is I can't actually get in their to rescue them so I was relieved he managed to get out by himself so I'd have to get someone to climb up to get them.
 I also had my annual tax statement as my social insurance payments are potentially taxable although I don't earn enough year on year to get into the income tax bracket or rather I had two which seems rather odd as I see no difference between them. I've fled that away for future reference.

Dealing with situations

This week I've been dealing with a couple of things that are not easy for someone like me to do and can have a bad effect on me emotionally and behaviourally.
Like most people I have a checking account with a Bank which is typically used for things such as my disability income replacement and care needs payments (Dla) to be paid into since for the majority of people payment by Government cheques redeemable at Post Offices or transferable to bank accounts stopped a good number of years back and equally I use to pay for things such things I buy, my PayPal tm transactions and rail tickets and to draw out paper bank notes.
To cut a long story short, here in the UK, banks have been trying to get out of owning branches, encouraging people to move to mobile or online banking and paperless billing and I recently received a letter saying unless I told them otherwise, I would no longer be getting monthly paper statements from August and they would be done quarterly.
Now while you can telephone the bank where it can tell you your transaction details, I don't always understand what is said and between hearing it and say trying to write it down , I totally forget what was said and while I can see a monitor online, my dyslexia is such words and figure go all over the place while so I normally use colour transparencies and a rule to filter  on paper this doesn't work on a monitor and I'd end up having print everything off.
I get very anxious telephoning people, never feeling I've understood them  and what we agreed especially if needs me to read information cos I struggle with that so I wasn't looking forward to it which wasn't helped by a good seven minutes wait.
Anyway I get through to a customer advisor in Glasgow and having supplied my ID details, explain to him a bit about my disabilities around talking and using the bank before explaining my call is about monthly statements and I'd like to keep them. We do a quick ID to confirm the account and with his support, reassuring me throughout I managed to do this by myself.
The other thing was that 'Form' - the Employment and Support Allowance Work Capability Assessment from April and I had a brown envelope from the Government department  that makes decisions and sends the payments electronically  in yesterday's mail in a badly worded three sheet letter.
It tells me they have looked again (not using the word 'reviewed') at my claim due to a 'change' (not saying what 'change' it is) outlining what I should get , what to if wish to appeal the decision and that I'm judged to be in the group for people who are unlike to transition back into work anytime soon.
Without expressly saying it, given nothing else had changed I'm reasonably sure this is the decision looked at with medical information from my doctor by the assessment people and the department as it was dated last Tuesday and followed a statement by them of my total payments for the last tax year I had last week.
I'm cautiously optimistic this is the last say for a good while about that benefit which leaves me feeling a lot more relieved.