Skintember, week 2.

Monday, 10th of September.
No letter about PIP in the post today.
Made a crumble with ingredients we had at home to take with us, bought some custard, and then we went to see Husband’s younger sister for the afternoon. As she lives in the next town over it costs to travel by bus to see her but Keeping up Appearances meant I felt we should go visit. She gave us some coleslaw to take home as neither of them eat it. Husband was peckish despite me packing snacks and drinks, so bought two tubs of Pringles.

Tuesday, 11th of September.
Finally had the decision letter through in the post – Husband has been awarded PIP<3. Had a friend visit that we hadn’t seen in ten years. We were gifted a tin of corned beef which had served as a deterrent after being left in a house share where the tenants were vegetarian.
Keeping up Appearances meant we went out for lunch, to Kitty Cafe. I paid for the entrance fee for us and our friend paid for our lunch which was very generous.
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Wednesday, 12th of September.
Most of today was spent supporting Husband as his mood was very low. Wednesday was spent doing things around the house and working on eBay listings, as I won’t have the time or patience to do many of these once I am back in work. Doing tasks that meant I could be close to him.
Had a letter through letting us know the annual gas safety check for the boiler is due, will cost £75, and when can we book an appointment? Had a giggle and then filed it away in ‘To do when we are not skint’.
Husband’s friend is really going through a bad time with change of medication for pain management, so we ordered a takeaway for her so she wouldn’t have to cook.

Thursday, 13th of September.
Spent today working on eBay listings. Have sold two things so will post those this weekend.

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Lovely cawl for lunch, with sourdough bread cheese toastie.

Neighbour has come home from vacation and asked if I wanted to come by and sit in the garden. Had a nice afternoon sitting with her and her cats and just decompressing, while being fed lovely treats and given tea.

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Decided to roast the small butternut squash I got from Foodprint, it turned out delicious. I love these rich fall colours fruit and veg have.

Went to Co-Op to see if they had any reduced bargains, but think I went too early as there were reductions but nothing that caught my eye. This was at 8.30pm so maybe go at 9pm next time?
Got Husband a nice pasty for 25p which will form part of his dinner tomorrow.
Paid student loan instalment and invoiced for the media analysis work I have done this month.

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Wanted to try and grow stuff in water and then pot it out, so pleased with these spring onions! This is after a week and a half in a small container in water I changed daily.

Friday, 14th of September.
Husband had appointment with employment advisor today, all-day ticket is £5. Fortunately for us, they reimburse your travel expenses. They also reimburse expenses associated with with and have let us know they can reimburse Husband for the DBS check he needed to start.
Keeping Up Appearances meant I encouraged Husband to remember to get his ticket reimbursed so he could treat himself for lunch if he wanted. Bless him, be brought us fried chicken home he insisted on sharing with me for lunch.

Checked bank account balance, Paypal has gone in and Arriva Trains Wales have reimbursed us for the delay when we travelled to see Husband’s sister in Wales. That will tide us over for a bit.
Did washing, changed the sheets and gave a laundry basket Husband’s sister has given us a really good scrub.
Went food shopping using the all-day ticket Husband had bought saving me using my bus pass, sadly Foodprint had to close early so was shut. Spent some of my Boots Advantage Card points on deodorants for Husband as he’d run out. Went to Tesco to buy some groceries- had a nasty surprise at the checkout as one of the gift cards I wanted to pay with was empty, so had to pay in cash much to my annoyance. Will ensure I check at the kiosk before I go shopping next time, so I know I have the balance I need to cover what I buy.

Finished putting up all my eBay listings, over 100 of them! YES!

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The Cat came and had a snuggle ❤

Saturday, 15th of September.
We were meeting up with our neighbors from the terrace in the Wetherspoon across the main road. Keeping Up Appearances meant we went along and had breakfast. I chose a standard breakfast rather than a large, which came with unlimited tea refills. Naturally I had 3!
Got Finance questionnaire through the post to fill in, once done and sent back I’ll get a £15 Amazon voucher which will be added to the Christmas stash.
Went to the post office to send 2 eBay sales off, and walked by the shops coming back. Got some reduced bananas and in Wilkos they had their end of season sale.

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So pleased with these, good dates and everything. Can’t go wrong with 10p for a seed packet! I am determined to grow more things next year so these should be good to try.

Sunday, 16th of September.

Today has been spent doing stuff around the house – laundry, folding stuff, emptying my in-tray, things I won’t have the will to do when I’m in work. Made lunches for us both and a shepherd’s pie style dish for dinner. Ensuring the kitchen is clean and dishes done for when I get back Monday night.

I start my new job tomorrow!

 

 

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Applying for PIP: Our experience, part 8.

Sorry for the delay in posting this, but spent all of Wednesday and some of Thursday supporting Husband as his mood has been quite low.

I am very, very pleased and relieved to tell you that we’ve had the letter from the court, following the tribunal hearing last week.

They have overturned the DWP’s decision and awarded Husband PIP.

He has been awarded standard rate mobility, 8 points, and daily living, 9 points, which equates to £80 a week if the Citizen’s Advice website about PIP is on the money.

It has been backdated to the beginning of May 2017. And Husband has been awarded it to May 2022.

The letter we received explains that it has sent a copy of the courts decision to us and one to the DWP. It does say that it does not enforce the decision made, so it can’t help you with ensuring the benefit is paid. This also means that if they rule that you’ve been overpaid, they won’t help the DWP recover the money.

If you are unhappy with the decision you have one month from the date of the letter to write to the tribunal to explain why, you can ask for a decision to be set aside if there was some error in the proceedings or a technicality.

Not that we will be doing that! We are so pleased that it’s now over and done with. And I am so delighted that they have backdated it from the day we started this process, and that he’s been given it for four years. That’s four years I don’t have to think about it or worry about how to pay for things.

The counselling Husband has been receiving this year has been incredibly helpful and is something that will carry on until further notice. It’s been totally worth it.

However it’s also something that has wiped our savings out completely. But this PIP payment he will receive will help cover the cost of that every week.

Just opening that letter and reading it, I could feel a stone fall from my chest.


Our tribunal hearing was set to be in the afternoon.

The night before, I found out something smart-casual to wear, and went over our PIP paperwork folder, adding in the printout of Husbands medical record. I also ensured I found out a notepad and several pens, in case there were things I wanted to add after the panel had finished asking Husband.

The day of the tribunal hearing, I let Husband sleep as long as possible, before getting some breakfast going.

The gent representing us from the advice service asked us to be at the court half an hour before. So we set off in good time, remembering not to pack a drink as they would not let you take it in.

It was forecast to rain so we took an umbrella. Which was then confiscated by the security staff once we entered the building, as it could be used as a weapon, and could be collected on our way out again.

Husband was growing nervous and feeling hot under the collar, so we went to the cafe and got an ice cream and a cup of water for him. I then went out into the lobby to find our representative and Husband’s mother who was also accompanying us.

Once we were all present, we had a look at the board to find out what room we were in, found the room and then sat down in a private room next to it to just chat about how things were. A court attendant then came to the room and took our names down and our relationship to Husband, and let the panel know we had arrived.

We were ushered in to a room where three ladies were sat on one side, and there were seats for us on the other side. Present at the hearing was a judge, a doctor and a lay person with experience of Asperger’s Syndrome.

The panel started by introducing themselves and explaining to Husband that they were there as a neutral party between the DWP and us, to listen to us and examine the evidence presented by the DWP and by us.

All in all, we were there over an hour. It’s one of the most intense hours I have ever experienced. The panel wanted to hear from Husband first and foremost. If there was anything we felt had been missed out and would be helpful to let them know, we would get a chance to say that at the end. So paying close attention and taking notes was crucial, as this was really our chance to explain Husband and how he needs support.

The panel seemed interested in Husband and what he had to say, and seemed to value the input of Husband’s mother and myself.

What was also invaluable was that they seemed to have a knowledge of Asperger’s Syndrome and how it can be challenging – in comparison to the lady who assessed Husband who I think did not understand that it’s a spectrum and that people fall in different places on it, and will have different support needs depending on that.

One series of questions that have particularly stuck with me was when the lay person asked Husband about work and what that had been like, and engaging with people there. She asked if he had formed friendships with his colleagues, if he went out with them or if they invited him anywhere. Husband very pointedly and clearly said no. She then asked if the children where he worked engaged with him and talked to him and he said a clear yes. She listened with a knowing look in her eyes. It’s hard to explain, but it is as though she understood very well how not just Husband but how many people with Asperger’s Syndrome can find it challenging to engage at work. Or how people simply just don’t do it.

She then asked me if I had anything I wanted to add. I explained how Husband finds it hard to make small-talk and knowing when the right time is to jump in to a conversation. And knowing what to say, especially to someone you don’t know very well, how to start a conversation on the first place.

And how this all creates a barrier for Husband with regards for talking to people and establishing relationships and friendships.

I explained how with one notable exception, Husband’s colleagues had never engaged with him or taken an interest in him, invited him anywhere or initiated a conversation with him. On his last day at working at his previous job, nobody from his team came to say goodbye, even after working there for five years. Not even one. There were no cards and no presents, no nothing, and while I understand that it’s not the be-all and end-all, it’s normal acceptable standards of politeness.

It was the children who came and said goodbye to him and said they would miss him, three of which had made cards for him.

I finished by saying that it makes for a very lonely existence at work. You just go there and do your thing, but you’re just present. You don’t form relationships or friendships with anyone, and for the most part Husband’s experience has been that nobody has wanted to even try to do this or make the effort to at least understand.

All in all, going to tribunal was a good experience. I felt the panel were interested to hear from us and took on board what Husband, Husband’s mother and myself had to say. We were there over an hour and when we felt we had nothing else to add, they thanked us for attending and said a letter with their decision would come in a few days’ time.


Saturday, Sunday and Monday went by and no letter appeared.

I was trying to do stuff and just get on and be present, but everything just seemed to fade in the background and somehow seem less bright, because of me waiting for this letter.

The gent who represented us was very positive after the tribunal and said he felt it was very, very unlikely that Husband would not be awarded it, given how much evidence we presented and how much information we gave them. But still.

Silver is now a bitter, jaded old woman who has quite frankly had it up to HERE with how Husband and herself has been treated over the last year and a half, and won’t believe anything or consider anything to have any value or truth to it, unless it is in writing.

Tuesday morning we were sat in the living room with a friend who was visiting when I heard the mail flap go. I excused myself and ran to see if anything of any importance had been delivered. Sure enough, one envelope for Husband and one for me had arrived. I tore mine open and skimmed it to get to the important part.

I was so happy.

We have been believed.

We have proven that we are not making Husband’s support needs up. Or how much I do to support him to live as independently as possible, and generally hold the house and our lives together. And how much his family helps us.

We have also established how in effect Capita and the DWP have either lied about Husband, or twisted everything we said or did during the application and assessment to his disadvantage.

Closing thoughts:

  1. This year and a half has brought out feelings in me I did not even know that I possessed.
  2. I now know that the current government thinks anyone with a disability is either a scrounger and a thief, and that it falls to the person applying to prove otherwise.
    God help anyone who doesn’t have anyone helping them through their PIP claim, from start to finish.
  3. Sure, we have until 2022 before we have to reapply. But that does not mean I will just let things go along. I will start documenting now, until 2022, our journey and how Husband is supported by myself and his family, so that when the reassessment rolls around, we will hopefully not have to justify ourselves as much. And as our friend pointed out, because Husband is in the system now, it should be much harder for the DWP to then say he is no longer entitled to PIP.

Sorry if it sounds cynical, but I feel it is best to be realistic about these things and be prepared. Especially after everything we have been through and how long this process has taken.

All the same.

We’ve won.


If you want to read about our PIP journey, you can do that here:

Quick PIP Update.

Applying for PIP: Our experience of applying for PIP, Part 7.

Applying for PIP: Our experience of applying for PIP, Part 6.

……..

Applying for PIP: Our experience of applying for PIP, Part 5.

Our PIP anniversary (Our experience of applying for PIP: Part ?)

Applying for PIP: Our experience, part 4.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 2.

Applying for PIP: Our experience – part 1.

Skintember, week 1.

We are officially skint.

Self-inflicted, but all the same.

Paying the credit card bill off and the workmen to have our bathroom renovated, combined with me needing new glasses and starting a new job and probably not getting paid for that until the end of October equals a very skint September and possibly a very lean October.

Need to use as little money as possible as we need what’s in my account to pay for the mortgage, council tax, utility bill, internet, phone.

As I am writing this I also have remembered and strongly suspect the water bill will come in October as well. Drat.

Nevermind. We have plenty of food in the house and vouchers to use up so will treat it as a challenge.
Part of the challenge involves Husband not becoming aware of how tight things are, as he will be upset and worried.

Saturday, 1st of September.
Went to Foodprint and got some lovely food, plus instant noodles from the ethnic food store.

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Lots of lovely food. This cost us £3.75.

Sunday, 2nd of September.
Keeping up appearances means going to restaurant with Husband’s family and having dinner out.

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Really nice and unique chandelier hanging above our table.

Monday, 3rd of September.
Paid the credit card bill in full and the first half of the bill from the workmen.

 

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Made some stock from the leftover chicken carcass, with herbs from the garden.
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Returned these to the library on time to avoid accruing fines.

Tuesday, 4th of September.
Husband had to have a 24 EEG with the recorder put on him for him to wear a full day and night, to monitor his epilepsy. Husband’s parents very kindly met him at the hospital and drove him home. Made spaghetti bolognese as per his request as he was feeling miserable having to wear it, but thought I was stuck as we did not seem to have any tinned tomatoes at home. Found a tin of cream of tomato soup and added that instead which was a great success and very tasty!

Wednesday, 5th of September.
Husband had the EEG taken off – had to send him in a taxi to hospital and a. I was busy and b. he naturally did not want to go on public transport and be stared at. Paid the second half of the bill for the renovations. Spent some of our vouchers at Sainsbury’s (getting a pack of stew vegetables for 40p!)  and collected some free food from Olio. Posted stuff we have sold on eBay.

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Lovely food from Olio. Free and not wasted. My favourite kind.

Thursday, 6th of September.
The day before our PIP tribunal hearing. Spent the day distracting myself with YouTube videos and starting the cleaning of and taking stock of our kitchen cupboards, before tidying and cleaning the rest of the house to get it back in order after having the workmen here. Went by Tesco and used our vouchers for some food, including a bunch of mini donuts for 26p.

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All neat and back in now. Plus it has given me a lot of meal ideas.

Friday, 7th of September.
PIP tribunal hearing today.
Husband’s mother very kindly offered to buy us a hot drink and cakes afterwards, and we sat and just decompressed for a while after the hearing. Husband wanted to go to the cinema to see the Happytime Murders to unwind and take his mind off things, so used Tesco Clubcard vouchers to get cinema tickets. Used voucher to get us drinks from Tesco and had remembered mini donuts so brought those to the cinema.
Was feeling wiped out so we had a takeaway afterwards – got cashback for the order so while not very saintly, it did help with the cost.

Saturday, 8th of September.
Bought food from Foodprint (Three of the items I had to bin when I came home as had gone mouldy! 😡 Must remember to check things thoroughly before buying baked goods!). Posted stuff we have sold on eBay.
As weather was pants and will be pants for most of next week, I made a huge casserole of cawl. I grew fond of this after trying it in Wales. It’s mutton or beef soup with leeks, potatoes and root vegetables in it.

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Cawl in progress. Made with super cheap stew pack of vegetables, homemade stock and salted mutton gifted to us by my sister and her husband. Mr. Stabby is supervising.

Was going to bed when suddenly sat upright remembered that the overpayment is still applied to the mortgage and that it’s due to go out next week. Tried to call bank but was closed.

Sunday, 9th of September.
Called the bank, changes to overpayments has to be done within a certain number of working days for it to be applied. So will be taken in full this month but will be reduced from the next month onwards. Made a request for a withdrawal from Topcashback and then from PayPal to ensure we have enough in the account for when that goes out.

Finished cleaning and tidying the kitchen cupboard and hung out the laundry.
Sharing Sherwood was on today so to keep up appearances and in a bid to distract myself from waiting for that dreaded brown envelope to arrive we decided to go.

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Tonight’s menu, all lovely and delicious.
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Got lovely surplus food and leftovers from Sharing Sherwood.

We are ok for next week, foodwise.
I will continue to write the listings for eBay, as the end is in sight to get all the listings I lost back onto the website.

Tomorrow we are travelling down to visit Husband’s sister; in a bid to be frugal and to be able to bring something with us to share I will get up early and make a crumble.

Here’s to hoping we get a brown envelope with some good news tomorrow, and that next week will be plain sailing.

 

 

Quick PIP Update.

Hi friends and followers (and family?),

Just a quick update as I’m absolutely worn out. We have been for the second part of the PIP tribunal hearing for Husband this afternoon.

We will get a letter with their decision in the post by Monday.

The gent representing us was very pleased with how it went and said he would be very, very surprised if Husband was not awarded PIP based on what he said and what me and his mother said.

Fingers crossed.

 

Gosh, I’ve been nominated! ~The Sunshine Blogger Award~

It really made my month when I saw that not only did I get my first ever reblog, but I have also been nominated for the Sunshine Award! It’s a chain that is used to promote blogs that are creative, positive and inspirational.

Shannon from Littleseabear very kindly nominated me. *feels all fuzzy*

The rules are as follows:

  • List the rules and display The Sunshine Blogger Award badge in your post.
  • Thank the blogger who nominated you and link back to their blog.
  • Answer the 10 questions that the person who nominated you asked you.
  • Nominate up to 12 other bloggers who you think should receive the award and ask them 10 new questions.

I was asked the following questions:

  1. What is the most inspiring thing you have seen or heard? Why and what was the effect of this?
    Oooh, this is a hard one. I don’t know if ‘inspiring’ is the right word, but it’s something that made a deep impression on me and something that has stuck with me ever since.
    I think what has stuck with me is the book Hiroshima, by John Hersey. It’s a great testament to human wickedness, but also to human survival. You can read it for free here through the New Yorker, where it was first published as a series of articles. One of the best pieces of investigative journalism of all time, in my view.
  2. What are you passionate about and why?
    Food waste. The amount of food we throw away is disgusting and mind-boggling. We have the resources and space to grow enough food to feed everyone, but it’s just how it is distributed so unevenly that’s causing people to go hungry.
    Disability rights. Being on the receiving end together with Husband regarding how disabled people are treated has made me keenly aware of how the most vulnerable people in our society are treated. It needs to change.
  3. Which fictional character has stuck with you the most and why. It doesn’t matter if the character is from a book, a comic or a film.
    There are many characters which have stuck with me as I am an avid reader, but one quote which has really resonated with me recently is a comment made by a character called Krobus in a game called Stardew Valley. He is not human, and explains that he keeps himself hidden because ‘Humans destroy what they don’t understand.’ Given how we as a species behave most of the time, I can really identify and agree with this.
  4. What is the one thing you hope you do in your lifetime?
    I’d like to see more of the United Kingdom. I have studied here, lived and worked here since 2006, but not seen that much of it from a tourist’s point of view. I am going to see Stonehenge in October so looking forward to that. It’s a start!
  5. Who is your favourite author and why?
    Oh gosh, too many to say! I like so many, for different reasons!I will choose 34.The first I choose is C. S. Lewis. I read the Narnia books as a child and enjoyed immersing myself in the fantasy world of Narnia. I also listened to the audio books until they were worn out. Joint first place with Roald Dahl. His adventures were amazing and yet sensitive at the same time.

    The second author I’ll  choose is Brian Jacques, the author of the Redwall series. I read these as a teenager and young adult. For someone who did not have English as their first language, reading the Redwall series was an enlightening experience and it taught me a lot of very English phrases and words I wouldn’t have ever known if I hadn’t read his books. I also thoroughly enjoyed his books because of the songs and poems in them.

    The final author I choose is S. D. Perry. She wrote the novelization of the Resident Evil franchise, one of my favorite game series of all time, and she stayed very faithful to the games. I have read those books, quite literally, to pieces.

  6. What was the last book you read. List the genre, author and your thoughts on the book.
    The last book which I have just finished is a novel, by H. G. Wells, called In the Days of the Comet.
    I had only heard of War of the Worlds (also read this summer) and The Time Machine, but I had not realised what a prolific writer he was!
    At the time In the Days of the Comet was published it caused a scandal as it advocates for free love and for women to be able to love freely without the confines of having to be ‘respectable’ (read: married) all the time. It also comments on the fact that men seem to do whatever they want while women are expected to live their whole lives within the confines of what society deems acceptable.
    I enjoyed reading it, as H. G. Wells has a lot of ideas that were very ahead of their time.
  7. What is your biggest pet peeve and why?
    Again, only one?
    There are many pet peeves. But I must say the one I have thought about a lot more recently, especially having worked in further education, is how people seem more aggressive and challenging these days, in terms of behaviour.
    It’s not endearing or flattering, and doesn’t make you look better than others. It’s intimidating and makes you look stupid.
  8. When you were younger, what did you want to be when you grew up compared to now?
    Again, ALL the things! Like many children, I aspired to be a paleontologist. Especially after watching Jurassic Park.
  9. What is something that you’ve never done but would like to try?
    I would like to be able to bake something successfully.
    Genuinely.
    Several rock hard scones and flat Victoria sponge cakes lie strewn along the path of my culinary life. Can’t seem to get baked goods to rise, ever. Even when following the recipe. So for now I stay with things that don’t have to. Like crumble.
  10. If you could try out any job for one week, what job would you choose to try?
    Hmmm. I am very fond of animals, maybe working at a vet’s office or at a rescue?

I would like to nominate the following blogs:

Na Na Pinches Her Pennies

Family Life With A-S-D-ifference

SCHIZOSOMETHING

Banal Muffins

Hip Roof Barn

Dan Venture Travels

I’m Sick and So Are You

Love Travelling

Herding Chickens and Other Adventures in Foster and Adoptive Care

Poor as Folk

Broke and Millennial

My questions to you are, should you choose to accept them:

How’s your week been? (Genuinely)

Are you an introvert or extrovert?

If you won a life-changing amount of money, what would you do with it?

Best and worst thing about where you live?

Do you like cooking? If yes, do you have a signature dish?

If you had the chance to go back in time and change something in your life, would you? If not, why not?

Do you have any phobias?

What are your aspirations for the future?

Cats or dogs?

If you could learn a new skill or to learn how to do something, what would it be?

 

Over to you now ^_^

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An ambivalent August.

Here we are, already in September – where did August go?

What was good about August was:

  • We had a chance to travel and visit new places. We visited Husband’s sister and husband in Wales, and had a chance to visit Stonebridge City Farm and Newstead Abbey, two places I have never been before. I think the idea of being a tourist in your own town or local area is underestimated!
  • We were under on the grocery budget again and have done quite well this month. Foodprint, Olio and reductions have all played their part. The garden is also coming along well.
  • As we are out of term now, I have spent a lot of time doing stuff around the house which I normally don’t have time for. I am almost done dusting all the blinds and using the brush behind the radiators in the house. Ebay is also going well as I have set myself the goal of relisting everything that was deleted off the site in spring.
  • I got reblogged, plus a blog nomination from the lovely LittleSeaBear! In the process of doing a fuller post about this as we speak.

Things that could have been improved about August were:

  • The effect of Husband’s medicine change for his epilepsy medicines is still being felt by us both, leaving him feeling very tired and flat all the time. A visit to do a blood test he needed to see how his values were to check if his dose needed adjusting went horribly wrong. This has left him feeling frustrated with himself and me feeling trapped, at times. Caring for someone can be a very lonely place.
  • Not really something that can be improved but all the same: We had a letter to say that Husband’s second round at court for the PIP tribunal hearing will be held in the first week of September.

And somewhere in the middle is that the work has started on renovating our bathroom.

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No way back now!

Suddenly realised yesterday that with paying for the bathroom and paying the credit card bill in full, combined with that new job won’t pay me until the end of October, equals a very tight September and October for us.

In fact, it may well be a Skint September.

One of the things on my summer projects list is to clean and go through the kitchen from top to bottom, sorting our shelves out.

This will give me a good idea of what we’ve got in the house so we spend as little as possible. This might be the time to whip out the gift vouchers I have been saving from my surveying as well. I will also endeavour to go to Foodprint once a week to help us out. I went on Saturday and got lots of lovely food for very little money.

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Foodprint coming through for us again. This cost us £3.75.

Visiting Newstead Abbey.

Husband’s parents invited us along to a food and drink festival held at Newstead Abbey this week. I was so pleased we could go as it has been on the list of places I have wanted to visit, but we have never been able to go as a. it’s expensive and b. it’s quite far away and neither of us drive.

It used to be a priory and has had many owners, but it is most famous for being the seat of Lord Byron, the poet.

We also discovered when we got there that the entry fee (which Husband’s parents very kindly paid for us) included entry to the abbey itself.

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What a place it must have been to live in. It’s right out of a gothic novel. Husband was worn out at the end of the day (his medication is still making him tired) so we did not go into the gardens, but we thoroughly enjoyed the house.

As Husband said, it leaves us something to come back and look at next time.

A visit to Stonebridge City Farm in Nottingham.

In a bid to lift us out of the funk we’ve both been in lately, I coaxed Husband to come with me to a local treasure I had yet to visit; Stonebridge City Farm.

It’s run by volunteers and free to enter (though the encourage donations, £1 per child and £2 per adult), and they run workshops and take bookings for groups to visit. They sell their own eggs and organic produce and also produce their own honey. Naturally I came away with a lovely courgette and a bunch of fresh leeks!

If you want, you can buy animal feed at 50p a bag to feed the larger animals with, and they also have a petting barn where you can hold guinea pigs, rabbits and rats.

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Proof that even in an urban place, you can grow your own.

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The children’s climbing frames were donated to the farm, the goats love them!

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It’s strange to realize that you are in fact in the city centre when you wander around there. I also felt very inspired after seeing all the things they grow there and it has spurred me on to try harder next year.

Husband enjoyed sitting on a quiet bench eating an ice cream, and wandering around looking at the animals. I think we will go again but ensure that we go early in the day, as late in the afternoon it was quite busy.

 

 

Current mood: Feeling trapped.

I’ve got this feeling today of feeling trapped I can’t seem to shake.

Yesterday we went to the hospital as Husband needed to have a series of bloods doing to determine how he is doing with his change of medication for his epilepsy. The consultant is concerned that the dose of Epilim he is on is making his ammonia levels in his blood unacceptably high, so has lowered the dose of Epilim he takes. To bridge the gap to avoid a seizure she has started him on a new epilepsy medicine called Levitiracetam.

She did warn us that two of the side effects of this could be low mood and feeling tired, both of which Husband has been experiencing. She also said we would have to go in for bloods to see if his ammonia levels were coming down, and she also wanted to investigate if Husband had an under-active thyroid.

We arrived on time at 3pm and let the receptionist know we were there, and she asked us to take a seat and wait to be called. So we did. Husband was calm enough as he had a game on his phone to distract him.

Husband was getting progressively more agitated (hates injections and needles) so at 3.40pm I went to the desk again to ask if they were aware we were still waiting.

As it turns out, they had not let them know we were there. So they ushered us in and asked us to wait while they got everything together. They seemed surprised we were there and asked us what we had come for (!!!). When we said, they then stated that they had to get a specialist to come take the samples due to the nature of the ammonia levels sample they wanted.

The specialist arrived at 4.20pm. By this point Husband was not communicating or making eye contact as he was too wound up and distressed. They tried four time to take the sample but Husband just couldn’t calm down sufficiently for it to be done.

I could tell that he was becoming too distressed so I proposed to do it another day and rebook the appointment, and so we left at 5pm, not having been able to take the bloods they needed.

Since then Husband’s mood has been very low. He has been beating himself up about it, calling himself a coward and saying I would be better off if he didn’t exist or if we had never met. He slept quite poorly so he is back in bed now resting.

I was hoping to go out with him today, even just for a walk as I think it would help his mood, but I don’t think this will happen now. I have been asking Saturday, Sunday and then suggested today, but don’t think it will happen today either.

Trying my really hardest not to be resentful and upset, but can’t help but feel trapped at the moment as I don’t want to go out leaving Husband here on his own when he is feeling so rubbish. Feeling cooped up. Want to go out even for a walk, but can’t.

I am trying to take my mind off things by doing stuff around the house and being productive. I’ve still got dozens of eBay listings to photograph as we are clearing out some books so might get stuck in with that.

We are also having our bathroom renovated, the gent is coming to do the measurements this week and next week they will make a start.

And we do have a date for the PIP tribunal hearing now.

So have to try to focus on the positives.

…………

Applying for PIP: Our experience of applying for PIP, Part 7.

We have a second tribunal date.

After our first tribunal hearing had to be adjourned due to Husband’s distress (plus the big difference between the DWP report and our PIP application), I initially just wanted the ground to swallow me up.

I just was so tired, and feeling so worn out and flat.

I was also quite resentful of the fact that we even had to go through this process at all/

PIP is there to help people with disabilities live a more independent life and to offset the cost of things and services they may need to do this. In theory.

But I have long since come to realize my mistake in initially assuming that a. that the DWP and Capita were there to help us and b. that they genuinely wanted to help us.

Applying for PIP for Husband, being turned down twice and having to now go to tribunal a second time has brought out feelings in me I didn’t even know I possessed. And I’m not even the claimant!

Anyway, I digress.

Back to our regularly scheduled program.

When we came back home after visiting Husband’s sister in Wales, we had received two letters.

The first was the medical report the court asked for, to get a more complete picture. To make it fair on us, we get a copy as well for our records. It asked us to bring it with us to the tribunal when we go.

It was quite a thick document as it contained all the medical information on record about Husband from when we started the process of having him diagnosed with Asperger’s Syndrome in 2014.

It was a bunch of entries with jargon and numbers (probably would make more sense for someone within the system) detailing each appointment and enquiry that has been made regarding Husband’s health. None of the information within surprised me greatly, bar a scanned copy of the document from the insurance company asking for information about Husband’s health when he applied to get life insurance when we bought the house.

One thing that I noticed which I find oddly reassuring is that it says on the majority of the notes put in about Husband’s appointments, that he was accompanied, either by one of his parents or myself.

I hope this highlights to the panel at tribunal that Husband does need support with getting about and going places. Especially going to places he is unfamiliar with, as he otherwise won’t go as it’s too anxiety inducing (take THAT, Capita staff who decided to award Husband 0 points for mobility!).

The second letter we had states that we have another court date for a tribunal hearing. We are going back in on the 7th of September.

It seems they have taken on board what our representative has said, as they said they would contact the court and ask that we would be seen first, to lessen Husband’s stress. According to the letter, we will be first in that day.

Here’s to hoping they will continue to listen to us, when we go a second time.

You can read about our experience of applying for PIP for Husband below:

Applying for PIP: Our experience of applying for PIP, Part 6.

……..

Applying for PIP: Our experience of applying for PIP, Part 5.

Our PIP anniversary (Our experience of applying for PIP: Part ?)

Applying for PIP: Our experience, part 4.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 2.

Applying for PIP: Our experience – part 1.