A Nice November.

December is officially upon us, for better or for worse – so how was November?

Nearly-There November was nice for a variety of reasons:

  • We were under budget for the food shop this month. Largely thanks to reduced bargains and Foodprint. And Olio.
  • Despite it being officially winter, I was still able to peg the washing out several days this month, and for it to be nearly dry on my return from work. This is such a help for me, as it means I don’t have to have lots of damp washing hanging around (only slightly damp washing that smells wonderfully of having hung outside).
  • Husband was awarded his Mobility Travel Card. This means he can travel in the community on buses and the tram without having to worry about the cost, I am hoping he will use it to see his family more, to make him feel less lonely.
  • Had a friend visit; we hit the charity shops and ate a lovely lunch at home. Also enjoyed seeing my former manager and having a good chat.
  • I got a £30 giftcard from one of the panels I contribute to. And £15 in vouchers for doing a product test.
  • Managed to get some lovely new towels for very little money, and got £35 cashback on our contents insurance.

Things that could have been improved about November were:

  • Based on Husband’s mood and what he was like last year, I am quite confident Husband has SAD. His mood has become more subdued the darker it has become. Will investigate light therapy and buy him a light therapy lamp. Thank goodness for his PIP as those lamps are not cheap!
  • Had two days off work as feeling blergh.

 

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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.

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.

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?

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.

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 ?)

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 next installments in our series, the Quest for PIP, here and here.