A jumbled July.

July has come and gone and we are now in August. How did we do?

Good things about July were:

  • I had a chance to go home and see my family at the beginning of the month, which was lovely. I visited my mother and siblings, and met up with several people from school, and met my best friend twice. Sister and her husband also sent me home with a lot of lovely food which has helped us a lot.
  • Work has finished for the year which has meant Husband and I have been able to spend more time together as I’ve been home more. The weather has been hot and sunny which I love (and Husband hates). We celebrated our 8th wedding anniversary this month with a takeaway.
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  • We were once again under on our grocery budget, even with a £60 online food shop at the start of the month with Sainsbury’s (so naturally I ordered six bags of cat litter, the less I have to carry home the better!). Foodprint has helped a lot on the budget, and I started using Olio. I also went and foraged near our home and found lots of blackberries.
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    Still got some reduced bargains.
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    Foodprint has really helped us live healthily this month.

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    The bread and pastries came through the Olio app which is an app where people share surplus food for free. If I have time to carry on using it I might do a post about it.

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    Went foraging last week and found these lovely blackberries. There is more left, just needs to ripen first.
  • Another things that went on behind the scenes is that I have got a new job! I will work at the medical library at the local hospital in the week. This replaces the library job I have at the further education college (my weekday job). I predict that the work will be more academic (finding journal articles for consultants etc.) and the likelihood of being called names by our users is significantly reduced. I am waiting for HR to agree to a start date and then I will hand in my notice. Another perk is that this job is within walking distance to the house. This is important.

Things that could have been improved about July were:

  • We went to Husband’s tribunal hearing for PIP after over a year of waiting for it to be resolved. However due to Husband’s distress and the discrepancy between the DWP report about him and what we put on the form, the court decided to adjourn to access Husband’s medical records to get a more complete picture. They have 30 days from the day of the tribunal hearing to do this and then they will call us back in. So we are still waiting.
  • Husband has had to have a change in the dose and kind of epilepsy medicine he takes, as the one he was on made the ammonia levels in his blood unacceptably high. This change has left him feeling very tired and out of sorts, and so he has spent a lot of time resting and going to bed early as feeling tired brings on myoclonic jerks.
  • Having time off has meant eating a lot of good food and not moving around as much as I usually do, so have gained weight. Hopefully this will shift when I start my new job as I can walk to and from work, combined with bringing healthy lunches to work again. At my former job we have a standing desk and I will miss that sorely as, let’s face it, a lot of people, me included, sit far too much during our day.

I wonder what August will bring?

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

So.

Last week we had what was supposed to be our tribunal hearing for Husband’s PIP claim.

We had a letter through the post, giving us a time and date to come to the court for the tribunal. It also asked us to send through anything else that could be used as evidence so the court had it at least 7 days before the tribunal. They also asked us to bring the appeal papers we had been sent (the huge wad including the DWP report about Husband) to the tribunal. Further back it explained how we could claim expenses if we needed to for transport and food and drink but none of that was relevant to our claim.

I duly went and got copies of two of Husband’s letters from his epilepsy consultant, and one letter from his therapist and one from his employment support worker supporting his claim, and sent them to the court using recorded delivery.

A few days later I had a reply from them confirming they had received our paperwork.

The night before our tribunal date, I went upstairs and got all our paperwork out. Beforehand I had bought a large ring binder and a big pack of punched pockets, and I sat and meticulously put every page of our claim and anything I had photocopied out in there in chronological order to make it organised and easy to find.

I also found out something smart-casual to wear, and our passports in case we had to identify ourselves while at the court. I had never done this before and was not quite sure what to expect.

The day of the tribunal hearing, I got up early and got myself ready and made us something to eat, letting Husband sleep as long as I could. We set off in good time and got there in advance to meet Husband’s mother and the lady who is representing us from the advice service.

At the court, we had to go through a metal detector and we had our bags x-rayed. My bag was pulled aside as the security guard had spotted liquids in there, which turned out to be my nose spray. I had been told we were not permitted to bring drinks in so I didn’t. Our representative had to leave her bottle of perfume at the desk and reclaim it once she left.

Once inside, it was as hot inside as outside which was really affecting Husband and making him feel ill. There was a small cafe so we went to get a drink and sat down outside in the foyer, waiting for Husband’s mother and the representative to come.

There was a notice board where the cases being heard that day were listed and I found ours quickly enough. Two cases were being heard before us that morning.

Husband’s mother and our representative arrived and we went up to the court room to wait outside. We were told that the second case was being heard then and that they were quite behind on schedule.

At this point the reality of what was happening really hit home for Husband. Combined with it being too hot for him, he started becoming increasingly distressed. The way he does this is by withdrawing into himself, and not speaking and making eye contact. He went and sat himself somewhere quiet to try and calm down, while I sat down and was told what to expect by Husband’s mother and our representative.

She explained who the people in the room would be and that we must not jump in or interrupt, as the panel would be interested in hearing what Husband had to say and his side of the story. The panel would give us a chance to say anything we felt was lacking by asking ff if we had anything to add,  so we were told to take notes.

She did say however that she felt we have a strong case because of the discrepancy between what we have said and written, and what it says in the DWP report about Husband.

By the time it was finally our turn to go in, we were 40 minutes late. Husband was at this point very distressed, not making eye contact most of the time and barely speaking.

It was a smallish room, with a big table and three chairs on either side. There was a desk in the corner where the clerk sat. She brought water and cups into the room as you are not permitted to bring your own food or drink into the court room.

Presiding was a judge, a GP on her left and a lay person on the right. Interestingly there was no representative from the DWP present.

The person representing us asked the judges to pay particular attention to several points in our claim where the discrepancies were quite big.

Before we even got into the claim, the panel wanted the GP to ask Husband some questions and specified that they wanted to hear the answers from him, and that we would get a chance to add anything we felt was appropriate once he had answered.

The GP asked Husband about his part time job and how he gets to work, and if he goes anywhere else in the community. She was patient and spoke to him in a friendly way but at this point I could tell Husband was visibly shaking and so he spoke very little, making no eye contact at all. He did manage to say that he doesn’t go anywhere else when asked if he would go anywhere else apart from work or the local shops.

This went on for about ten minutes before the panel said they wanted a break to confer and sent us out.

We waited outside the court room, when the clerk called me and Husband’s representative back in. The panel informed us that they felt that because of the way Husband presented and due to the discrepancy between our claim and the report from the DWP, they wanted to access his medical records to get a fuller picture. Therefore the court would adjourn for the day. Our representative pointed to the detailed report from the psychiatrist who diagnosed Husband with Asperger’s Syndrome and asked if this would not be sufficient, but no, this was not enough in their view.

The court now has 30 days to get the medical records to view and we will then be called in again to continue with the hearing.

We queried this with the representative after we had left the court premises; she was quite surprised as she had never experience this happening before, but did explain to us that there would be a new panel reviewing the case and everything within it. She also explained that although we had to consider if returning would cause Husband to become distressed again and if that was worth it, she had to make us aware that the success rate for PIP tribunal hearings is higher when the claimant is present. Her prediction was also that we would be seen quite promptly once the medical records had been obtained. In addition to this to lessen Husband’s anxiety she would request that we would be the first hearing of the day, not the last, in case the previous two overran. This will hopefully save us waiting around, making Husband anxious.

Husband has thought it over and although he does not like the thought, he is nevertheless prepared to go back and attend the second tribunal hearing.

——————————————————————————————————-

TL;DR: We’re still waiting.

If you want to read my previous posts about our quest for Husband’s PIP claim, you can do so here:

……..

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.

A motley May.

Gosh where does the time go? Have suddenly realised I have not summer up last month and we are almost in July!

Good things about May were:

  • Husband and I had a very positive experience when he visited Occupational Health for a health check. After everything that has happened to us, I have become quite jaded and guarded. So it was so lovely to see that (while I don’t expect everyone to know everything about Asperger’s) the occupational health nurse had made an effort to read up on it prior to Husband coming to his appointment and got an insight into what someone who has Asperger’s Syndrome might need support with.
  • My colleagues and line managers at work were lovely and supportive. It’s balm for the soul when you’re stressed out and the world seems to have it out for yo, that there are people backing you.
  • The weather has been getting progressively better and I had a nice walk one evening which included some foraging.
  • We have continued to be under budget for food and I think once I have done the grocery diary for three full months, I will do a more in-depth post about it.
  • I got to spend two days in London seeing my best friend and her sisters visiting from Norway.

Things that could have been improved about May were:

  • On the 21st of May was our PIPiversary. On that day, one year exactly had passed since we had started the application process for PIP for Husband. Still no tribunal date.
  • Work is becoming increasingly taxing, with challenging behaviour from students, coupled with many policy changes to our service. This has led me to experience some nights where my mood has been very low this month. Some of these policy changes are unreasonable, and some are downright discriminatory. I think what they will lead to, is a significant decline in the number of people using our services.

 

 

 

The last two weeks in review: A test of patience.

We’ve made some changes to the house the last two weeks, both inside and out. Not without its challenges, as the gent doing the work for us took much longer than he had forecast and so we spent a week on the sofabed downstairs while he did this to our upstairs bedroom:

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Before. Two awkward spaces, one on either side of our bed…
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….aaaand after! Just have to find all our clothes and things again now and put them away.
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Lots of lovely storage.

So pleased with how it has turned out. Just need to find the will to live to apply some varnish to it now.

I have also been doing some stuff around the garden at the back. Husband’s Dad surprised us by coming by one morning and bless him helped us cut the hedge for us. Our next door neighbor has said we are more than welcome to use their hedge trimmer when we need to, so that saves us buying it for the garden.

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Our back yard. I’ve managed to weed it now and clear some of the dead plants. I am so pleased so many of our plants seem to have survived a cold winter.
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Our sage, still being savage. I have cut it back a bit not as its size meant I couldn’t get in through the back gate.
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Aaaah! A wild tiny tomato plant appeared!
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A nasturtium has also sprouted, hope it’ll do as well as the one we planted last year did.
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Our front garden desperately needed a tidy. Before…
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…aaand after! Husband and I weeded and swept it and Husband’s father very kindly cut the hedges for us and helped us pull the last of the chickenwire out. We may get the front garden landscaped next summer.

Half term was very relaxed. The first half of the week was spent just with Husband and I enjoying it. Had dinner with his family and celebrated his birthday by going with him to see the new Solo movie and having breakfast out. I also travelled to London to see my friend and her sisters, and got some badly needed bras as several of mine are just unsightly now.

Last week was very different however, it was unsettling for us both.

Husband has been discussing lowering the dose of Epilim he is on as it is starting to interfere too much (seizure control ok, but impacting him in other ways). It was agreed with the consultant that the dose reduction would be done with his approval and with us discussing it first with the GP.

Naturally we went to get his prescription last Monday to find it had been lowered from 2300mg to 2000mg. Husband and I were both cross at this as it had been done without properly discussing it with us, but Husband was prepared to give it a try.

Husband and I ended up staying home for most of last week as his withdrawal symptoms were quite strong. Husband felt shaky constantly, tired all the time and felt like he couldn’t focus on tasks; he also felt on edge and tingly which he has explained is how you feel before having a seizure.

So he didn’t feel well enough to go to work, and I did not want to leave him on his own, so I stayed at home with him. Saturday one of the neighbours checked up on him while I was at work at my weekend job, and Sunday friends came by so he wasn’t alone for too long.

It’s been a week now and Husband is feeling more himself thank goodness. We just didn’t expect this to just be dropped on our laps.

We have however had a court date for PIP which I am pleased about.

I’m also quite happy with myself for getting some good reduced bargains these past two weeks. Buying yellow sticker items just helps us so much and has saved us so much money, especially this month.

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By going by four shops on my way through town after work on a Sunday night I managed to find us this food. Couldn’t believe the lovely fresh chicken we got for £1.31!
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Lots of lovely food, saved from the bin by Foodprint.
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Really chuffed with these finds, 24p for the punnet of plums! ❤

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

Houston, we officially have a PIP appeal date! This is not a drill!

We have had a letter through today from the Courts and Tribunals Service to say Husband’s PIP appeal will take place on the 13th of July.

1 year and two months after we started the application process.

It also says that if we want to submit any further evidence, we have to do this no later than 7 days before the court date.

Right. Best get on, then.

You can read the previous posts about our quest for PIP here:

Applying for PIP: Our experience – part 1.

Applying for PIP: Our experience, part 2.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 4.

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

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

Just a quick post to say it’s our PIP anniversary this week.

Oh joy.

What is a PIP anniversary, you may ask?

Well it was on the 21st of May in 2017 that I started our quest for PIP by calling the DWP on Husband’s behalf to start the process and request the form.

So it has now been over a year since we started this journey.

And we are still yet to receive a court date for our tribunal hearing.

Genuinely wondering what happens to people who don’t have anyone to support them while they wait for these things. Or if their payouts are delayed or stopped.

If you want to read about our experience thus far with applying for PIP for Husband, you can do so here:

Applying for PIP: Our experience – part 1.

Applying for PIP: Our experience, part 2.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 4.

An affirming April.

April came and went by so fast!

  • Part of this is because two weeks of it was taken up by Easter. I had a lovely time, spent one week at home with Husband and another week at home.
  • Food spend is continuing to be good and we are being very frugal, keeping below our targets. Part of this is because my sister and her family were generous when I visited at Easter and sent with me a lot of meats for the freezer. In addition to this I have managed to continue to go to Foodprint and get bargains. They now have a referral scheme with the Salvation Army foodbank in their area. Customers can donate a sum which they make vouchers out of, and people visiting the Salvation Army can ask for a voucher if they’re in hardship to get food from it.
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    Lots of lovely food bought over two weeks from Foodprint, saving it from the bin. I was especially pleased to find the peanut butter. Where were you when I did my challenge in December, hmmm?

    I have started to keep a very detailed grocery log and depending in how it goes I can perhaps post it in a few month’s time to show how it’s going. Or not, depending.

  • I am thankful for my colleagues this month who have continued to be supportive and kind. One of my colleagues who works a different shift to me normally has been working with us at the weekend. It’s been so nice to catch up with her as we normally don’t get a chance to talk. Two Sundays in a row she has offered me a lift partway home which has saved me a lot of time on my commute on a Sunday night. Last Sunday her generous offer meant I had time to swing by two of the shops while walking home to get these lovely things:
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    Packs of ham, 25p each, wholewheat thins, 21p and some lettuce, 21p.

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    Lovely red peppers from Sainsbury’s, 14p each.
  • We had three full days of glorious, gorgeous, hot weather. It’s gone back to being normal spring weather now, so I have continued to peg the washing out. One night it was so cold, but we managed to resist turning the heating back on.

Things that could have been improved about April are:

  • We are still waiting for a court date for PIP. We are in May now and on the 21st of May it will have been precisely one year since we started the application process for Husband’s PIP claim. The gent who will be representing us has said it may be some time yet. Because of this, it’s holding everything up at the moment. I don’t want to book any flights home or travel until we know when our court date is. Goodness knows what people who don’t have anyone to support them do in the meantime.
  • The higher-ups at my weekday job is continuing to be vague with what will happen to one of the sites I work at on a Monday when we finish for the summer. People who work and teach there have been kind enough to tell us their departments are being moved out to other sites, and by our reasoning they will not need our services there if there isn’t anyone there. However we have about eight weeks to go until we break up for the summer and we have not yet been told officially if we are going to be there when we return in September or not.
  • Logging in to eBay after a long hiatus, I have discovered that all my listings (the unsold ones) have seemingly disappeared!

Plans for May include:

  • Having a local carpenter bespoke cupboards built into the alcoves of our bedroom, one on either side of our bed.
  • Celebrating Husband’s birthday. Still need to fully decide what to get him.
  • Reclaiming the garden.

I also want to let you know something wonderful and precious has happened.

Husband has been offered a job!

I helped him apply for a vacancy in January and spent a considerable amount of time doing it as the application form was quite complicated. At the end of it we got to the dreaded Equality and Diversity questionnaire. Now, every time we get to this, Husband and I have to discuss the nature of the job he is applying for and if it would benefit him or hinder him if we choose to disclose that he has Asperger’s Syndrome.

In our experience, even before he was formally diagnosed, declaring anything did not count in his favour for the great majority of vacancies he applied for and he wouldn’t hear anything back. Even from jobs where we have made it clear through the person spec that he has the right skillset.

But we nevertheless decided to declare it for this job.

January, February and almost all of March passed and we heard nothing. I was a bit upset by it, but mostly resigned, as it’s just something we have come to expect.

Then suddenly at the end of March, Husband had an email, inviting him to interview.

By this time Husband had been getting some good quality support from the Work Health Programme and so they spent an afternoon with him preparing him for the interview and working out good responses to give to questions they may ask. So Husband felt confident and well prepared.

So naturally he thought he’d bombed the interview.
Two people interviewed him and the person taking notes shook their head every time they put the pen to paper. Every time. For the whole duration of the interview. He then had a technical task to do which he did flawlessly and quickly. Nevertheless he left the interview feeling quite cross  and unnerved as he’d felt he had prepared well for it.

We had resigned ourselves to that Husband would get a rejection email but to our immense surprise and joy, he had an email a few days later offering him the position. It’s full time which he wants to try, but there is always the option to ask for a reduction in hours if Husband feels he cannot cope.

At this stage we are waiting for the background check and references to clear, then a contract will be offered. Once this is all done Husband will work his notice at his part-time job before starting.

Of course I, being paranoid and based on the $%^& we have had happen to us over the last year and a half, won’t lower my guard fully until Husband a. has signed a contract and b. passed his probation period.

All the same, I feel hopeful. For the first time, Husband has been offered a job despite (and I am truly sorry to say it like this, but it’s how it feels being rejected all the time) declaring that he has Asperger’s Syndrome.

Husband is overjoyed and has made statements like ‘Now that I’ll be working more, maybe you don’t have to worry so much and I can look after you’ and ‘With me working more, maybe you can work less so we can spend more time together.’

Sure, money is nice, don’t get me wrong.

But what I want above all else is for Husband to have some confidence and faith in himself again, and to be happy.

Here’s to hoping this new start can provide those things.