I thought January was tough, but that was seemingly just the warm-up for February.
February has been really tough for us.
I spent most of February feeling tired and overwhelmed with everything that is going on with us and our family. This culminated in me crying hysterically for the best part of two days and realizing I need some serious help with supporting Husband as I just felt like I was drowning. This feeling is not as strong now, but I can feel it’s still there, below the surface.
While visiting my mother and family back home during half term, we had to have her admitted as she was very ill and they discovered she had pneumonia. She seems more herself now but is still incredibly weak. I found visiting her quite distressing as she was so confused, and I couldn’t help her or make her comfortable. The three days following it were spent walking around in a fog on autopilot.
At the same time, February had good parts to it as well:
Managed to forget to pay the credit card bill for January however the credit card company waived the late fees and interest as a one-off. This saved us £38.
The student loans department wrote to me to say we qualified to have the interest paid on my student loan written off for 2014, so that’s £1440 gone from my debt.
We were well under on the grocery budget – got some good reduced bargains and food at Foodprint. Also got some freebies through couponing.
I got to see my sister and her family, and my brother and his family.
My sister and her family very generously gave us a lot of meat and fish to take when I travelled back to the UK, which is helping our grocery budget a lot.
I managed to get six hours of free counselling sessions through the employment support hotline at one of the places I work.
Many colleagues and people on the internet have asked me about PIP and if we have got a court date yet – we are still waiting. We are in March now, and we started this process in May last year so it’s been almost a year we have waited for this to be resolved.
I am pleased to report this week has been much calmer – something I really needed.
Monday I went to work had we had a quiet day, so had the energy to do errands after work. What I wanted to do was ensure I did not have to go anywhere on Tuesday so got all my shopping, as many chores as possible, and the postal run done after work. Went to Sainsbury’s after work and was confused for a moment as I didn’t understand why the shelves were so bare – then it hit me. Of course. Winter. Or something.
Husband’s mother accompanied him to the JobCentre Tuesday morning, so I could potter around the house, but feeling stressed at having to go anywhere. Which was really nice – I got some overdue jobs done and feel very pleased with myself:
Wednesday was very cold here in the UK, with a strong wind and heavy snowfall. Sister gifted me a sheepskin vest so wore it to work and I am glad I did as it kept me warm at work.
After work I had the first of six free counselling sessions I have managed to get (eventually) through work. The counsellor is not too far away from home so I can get there, do the hour and then walk home from there. So we will see how that pans out.
Bless her, she could see why I am feeling overwhelmed – she said one of the things I discussed with her would be enough to crack someone, let alone the several things we have going on, all at the same time.
Thursday morning we woke up to this:
The college was closed Thursday and Friday due to the adverse weather so I had two days of rest at home. The uni also decided to close Thursday afternoon and was closed all day Friday. It’s been so cold so haven’t had much choice in keeping the heating on. Hopefully spring will come soon (?).
Thursday I didn’t go leave the house at all but Friday I braved the Hysteria from Siberia and went to Foodprint and also went to get some other bits and pieces from Wilko, Boots and Lidl. Lidl was so busy, with people buying milk and bread like the world was about to end.
Husband was especially pleased with the malt loaf and promptly had two slices of it with butter when I came home.
As the university was closed on Thursday afternoon until Saturday morning, we came in on Saturday to 67 missed calls on the renewals hotline and over 120 unanswered tickets, so as most of the day was quiet in terms of visitors we spent a lot of the day replying the enquiries we had missed while we had been closed and answering the phone.
Sunday we had a lovely brunch and a chat with our neighbours from our previous house and we got to meet their now 7 month old baby. Worked the Sunday afternoon as normal and went by Tesco on my way home to see if there were any bargains to be had.
I’m glad this week has been more relaxed, here’s to hoping next week is more of the same.
I would rather not this sort of week become a regular feature in my life. Last time I went home in February I found it incredibly stressful and it really threw me.
Monday morning at 2am I took the coach to Heathrow to fly to Norway for a week to see my family. I was aware my mother hadn’t been in great shape as she’d had the flu for the last week and a half or so, so I went to see her as soon as I arrived and stayed until Tuesday, getting the fire going in the living room and doing bits and pieces around the house.
My sister had told me she wasn’t very well – but I hadn’t expected her to be as unwell as she was when I got there.
This is the most ill I have ever seen my mother.
Even when she had chemotherapy and radiation therapy she was not this sick.
She was so weak that she couldn’t even raise her head and she stayed in bed for my whole visit, not having the strength to get out of bed and feeling completely wiped so didn’t want the carers to help her out either.
What I found very unsettling and distressing was how confused she was.
She asked me repeatedly if I’d been to check on the house. When I let her know we were home, she stated she didn’t recognize where she was. She asked me repeatedly where Husband was, if I’d fed the cat (her cat had to be put to sleep a year ago due to poor health), and where her grandchildren where. She would ask me about people who (I assume) were from her past and what they were doing.
My visit was spent tucking her in, giving her a drink as she didn’t have the strength to hold the glass, and trying to coax her to eat something as she hasn’t eaten much at all since becoming ill. I could see how sunken in she has become and how much weight she has lost since I saw her at Christmas.
I felt so helpless as I couldn’t really help her or make her comfortable or get her anything she wanted. She asked me to buy blue grapes when I went food shopping, but then said no thank you when I’d washed them and brought her a bowl. I’d offer her some cake or dessert and she would say yes, only to say no thank you when I brought it to her bed.
As I had to get up in the middle of the night to get to the airport, I was completely wiped by Monday night, but sat with her to ensure the carers did come to do their night routine. I could feel myself falling asleep sitting on the stool next to her.
The next morning the carer came and woke me, to let me know they had persuaded Mom to have an emergency appointment that afternoon with her doctor. I thanked her and silently wondered how they would get her into a wheelchair let alone out into a disabled access taxi, but two carers came and ensured we got in alright. I packed a bag for her in case she was admitted, and I packed my things so I could travel on afterwards. My sister called me and when I explained how Mom was not making any sense at all, she explained that Mom had developed delirium and that she would need to be admitted whether she wanted to or not that day.
At the doctor’s office, they did a CRP check (measures infection in the body) and we were seen by her usual doctor. He had a listen to her chest, got her CRP score and declared that she had pneumonia. He then said that it would normally be treated at home but due to her state he wanted her to be admitted to have treatment administered intravenously.
A CRP reading was taken from her the Friday before I came which showed a reading of 37 – so something wasn’t quite right, but Mom did not want to be admitted. When the second reading was taken on Tuesday it showed 185. Most healthy adults should have a CRP reading of between 0 and 5, and most people will die if their CRP reaches 300 or higher.
I steeled myself, as I was expecting to have to challenge Mom as she has been very reluctant in the past to be admitted. But surprisingly, she accepted it and the doctor’s office ordered a taxi for us to take us there. So I travelled with her and once she’d been settled in I travelled down to stay with my sister the the rest of my stay.
We visited Mom on Thursday on the ward and she seemed a bit better and less confused. Saying that, I called her this week and she still seems very confused so I will have to ask my sister if the treatment is working. Pneumonia is no longer as fatal as it was in the past as we now have antibiotics. However in someone already weakened, or if it is a viral version, it can be quite hard to treat. Mom is home now.
It wasn’t all doom and gloom.
I got to see my sister and her family and my brother and his family. I could have a fire going every day. My sister and her family were very generous and sent with me two sides of salmon, some lamb and some beef, a bunch of sausages and wiener dogs and some sliced ham, so that will all help on the grocery budget for us.
Husband’s mother suggested I ring the credit card and explain that our lives are in upheaval as a reason for forgetting the January bill and asking them if they would as a gesture of goodwill waive the charges. I rang them while waiting to board on Monday and they could see we had been paying diligently and in full every month so waived everything.
Last year I applied to the student loan company to get some of the interest on my student loan written off. They responded last week and they could see that in 2014 we met the requirement to be classed as a low income household, so £1440 has been written off the student loan as that was the interest we had paid that year. They asked me to apply for 2017/2018 once we have our Annual Tax Statements to see if we could be eligible for even more to be written off.
All the same.
My flight home was on Friday afternoon, and the coach from the airport got in at midnight. I had to get up at 6.45am the next day for work at the uni. Didn’t manage to finish unpacking my suitcase until Tuesday as I worked Saturday, Sunday and Monday.
Got some nice reduced stuff on Sunday night from the Tesco Express while waiting for the bus.
Those three days were spent on autopilot, as I didn’t feel like I was all that present due to being so worn out.
I just found it incredibly stressful and upsetting to watch my mom in such a state, and feel quite raw about it. I certainly don’t feel like I have had a break at all.
It was as though I was sitting by someone who was passing away.
Monday was very stressful at work, as we were down to two staff and my colleague had done her back in so I had to keep going to help her lift stuff or reach stuff.
As we were due to see the Work Health Programme coach the day after, I went home with a lump in my throat. I’d found some vacancies that could be suitable for Husband but the thought of having to sit and fill them in with him for hours filled me with dread.
Don’t get me wrong. We love each other, and as long as I have the will to live, I will support him and defend him.
But on Monday I just couldn’t.
I couldn’t face even the thought of having to do more work, after just having come home from work. And the day after that. And the day after that.
I broke down once I came home and was a crying wreck for most of the evening and the day after.
I just need some actual support, with supporting, if that makes sense?
If I am to continue going to work six days a week to support us financially, I need help.
I need more help at home keeping the house and I need help supporting Husband; filling in application forms, accompanying him places if he needs that, and so forth.
Naturally my poor mood affected Husband so when we went to the Work and Health Programme on Tuesday I cried for most of the appointment and Husband felt rubbish. As it is only the second appointment we have been to I can imagine what impression that gave of us, as the Wellbeing advisor was quite unkind and said that Husband’s problem is me. Because I work so much to support us and he doesn’t do as many hours and he feels he isn’t contributing.
We were both very upset with how they dealt with this, but will try to attend again as there isn’t anything else. Remploy wouldn’t help us as Husband is already enrolled on the Work Health Programme plus they don’t have an office nearby. The working scheme for people with Asperger’s Syndrome run by the county council can’t take him as he lives within the city limits, and it is just for people living within the county (???).
They suggested Husband applied for ESA (Employment and Support Allowance) and it is something Husband’s mother has suggested as well, it is something he could be eligible for and still keep his job.
If applying for ESA is anything like what we have had to deal with applying for PIP, I will not do it.
Having had to deal with applying for PIP and being told in effect that we are lying has brought out feelings in me I did not even know that I possessed. We started this process in May 2017 and almost a year later we are waiting for it to be resolved.
If someone else helps me fill in the form for it and takes Husband to the assessment, sure.
But I am not prepared to go through something similar on my own. I’m sorry if it makes me sound defeatist.
But it’s making me ill.
Husband bless him must have sensed how desperate I have been feeling this week, as he keeps asking if I am ok, no, if I am really ok, and keeps doing things around the house and saying ‘I’m trying to help.’ He wants to give up his counselling so I can go have some, something I have rejected as he needs it more than me. I have explained to him that the problem is that I have so much work to do, outside of work, that I am beginning to feel like it’s swallowing me up.
I think three things have to change in order to help me feel better, as I am feeling so overwhelmed:
I need much more help around the house than what I am getting now. I cannot go on working as many hours I do and still have more stuff to do at home.
I suggested a cleaner, to which Husband strongly objected. So we will sit down and go through a list to divide chores more evenly. At the same time I understand that while things might not be done to my standard (Hanging the washing on the line in a lump? Ok then?), it will still be done. I have to let that feeling go.
I need help supporting Husband’s search for a job. This means I will no longer actively look for vacancies for him to apply for, but leave that with him. If he wants to continue looking for work and finds something he needs help applying for, a gent at the WH programme is available on a Thursday and Friday to sit with Husband and help him actually fill in the form and write cover letters. I will support Husband with getting familiar with travelling there so he can make the journey there eventually unaided when he feels confident enough to do it.
I need a release of some kind. A friend told me she goes swimming. I am contemplating perhaps going on a Monday as I finish earlier in the day and the tram takes me to the leisure centre. I went swimming three days a week to be able to even fit into my ruddy wedding dress get in shape before and I thoroughly enjoy it when I go. Maybe that’s something I can do.
I feel more calm now. As in, I don’t feel great, but it’s not all coming out. It’s simmering a bit deeper within me.
The end of the week has been better.
As Thursday was warmer and we had bright sunshine, I took the plunge and hung a load of bedding out to dry on Friday before leaving for work. It had almost dried by the time I got home Friday afternoon and hangs on the airer upstairs in the top floor to just get it completely dry.
I also got some lovely food bargains last week and this week, which helps our budget a lot.
Next week is half term and I am flying to Norway to see my family. Coach leaves at 2am on Monday morning for Heathrow (What possessed me to think this was a good idea, as I will be working 2pm to 7pm on Sunday? What?).
Hopefully I will have a chance to relax a bit.
And I will perhaps not feel so lonely.
EDIT: And to add further fuel to my feeling of not coping: Suddenly realized yesterday that I had not let my self-employed work know I am going away tomorrow (they need 2 weeks notice minimum to find cover), so I had better ruddy find a way to do the work while I’m there! And when I came home I’d gotten a letter to say last month’s credit card bill hadn’t been paid – I’d forgotten! Paid it in full immediately of course, but we have accrued £12 in late fees and £26 in interest! AAAAARGH!
Blergh. At this rate, this will become a multi-volume endeavour. You know, the kind that you could buy from door-to-door salesmen and get on an interest-free deal in the past.
(If you haven’t and you want to, you can read parts 1, 2, and 3 of our quest for PIP here).
So Husband had a letter to say that based on their assessment of him on the 4th of September, he would be awarded the grand total of 0 points in each category, meaning he had a score of 0. This means that the DWP felt that Husband does not need support with any aspect of mobility or daily living.
The discrepancy between what we wrote and explained at the assessment, and what the DWP reported back, was staggering. The more I read of their rejection letter, the harder I could feel my heart beating and the more upset I became.
Why did the assessor and the DWP not believe us? Did they think we were lying?
Two points of their report, no three actually, really got to me and continues to grind at the back of my mind.
We explained in great detail and using examples, that Husband needs support when it comes to travelling, and what has happened in the past when that support has not been there. We also stated explicitly that Husband is so anxious of unfamiliar places that unless someone takes him there on the day he needs to go, or takes him on a trial run beforehand so he becomes familiar with the route and the place, he will refuse to go.
And still the DWP awarded him 0 points for mobility, stating that Husband ‘can plan and follow a route unaided.’
Regarding finances and maths, we explained both at the assessment and in the form what Husband needs support with, and how much of the finances I do because of this. Husband does not understand his own bank statements and wage slips, and he struggles with working his timesheet out, so I do this. I pay all our bills and all money going out comes out of my account.
Twice at the assessment the assessor asked Husband if he could do it with support, and Husband very firmly said no.
The DWP still awarded Husband 0 points which means he can ‘do complex budgeting tasks unaided.’
One of the last sentences of their rejection letter:
‘You told us you like listening to music and accessing social media.’
This sentence in particular riled me up and still continues to do so.
I work at a college in the week, three of the days I work at the site where we have provision for students with learning disabilities. You would be amazed at what some of these students can do on a computer – designing and putting stuff together, let alone accessing music and social media. To equate that to be able to access music and social media to evidence of daily living skills is insulting in my view and I think it highlights how little understanding the DWP have of Asperger’s Syndrome and how not two people are the same. That people fall on a spectrum and will be different in terms of ability.
To illustrate: We have one student who excels at animating and designing, and they do this during their free time at college. Their knowledge of this stuff far exceeds anything I could hope to just teach myself and they continue to impress me with what they come up with. However. They follow a very strict routine and any deviation from this is not acceptable as it makes them feel extremely anxious. Predictability is key. Therefore staff have to ensure that a PC is available for this student at break time, as that is what this student is expecting. In the past when a PC has not been available, this student has become, and this is being polite, hysterical.
So how can you say using a PC to access music and social media, is an indicator of how well you cope with daily living?
You cannot go straight to tribunal now if you disagree with the decision the DWP makes. Prior to this you have to ask the DWP to reconsider their decision. I rang the DWP on the 10th of October to let them know we wanted a mandatory reconsideration and that we would be sending it in the post. You have 30 days to send this to them.
For this letter I laid out each category. I put what they had awarded Husband, and why we felt their scoring was wrong. I finished the letter with that we intended to take it further if we were not satisfied with the outcome. I also explained that it was me writing the letter on Husband’s behalf with his input.
The deadline was the 10th of November, so I had it proofread and sent on the 7th of November. I sent it recorded delivery and retained the receipt. Two days later I entered the reference number on the Royal Mail website and saw that someone had signed for the letter at their end on the 9th of November.
Then, the next week, on the 15th of November, we had that dreaded brown envelope through the mail slot again.
Letting us know they had reconsidered their decision and that their decision was still the same, 0 points for all categories.
Said letter was dated the 7th of November, the same date we sent them our letter with why they should reconsider their decision. This means they hadn’t even read what we put. In addition to this, you have 30 days from the date on your letter to let the court know you want to appeal.
By dating it the 7th and us getting it on the 15th of November, it had shaved off 8 days that we could have used to get our tribunal letter together.
Husband, myself and Husbands mother got together to write the tribunal letter. I would read Husband the different criteria and how many points were awarded for what, and he would say where he felt his support need fell on the scale for each one. I would then fill in what evidence we had of this and what we put on the PIP application form.
Husband’s mother very generously purchased a subscription for us for a page called Benefits and Work which have guides for these kinds of letters, so I followed their guidance.
All in all in his and our opinion, Husband should have scored 23 points for daily living and 10 for mobility alone. We also wrote in our appeal letter what had happened with our mandatory reconsideration.
We sent this recorded delivery as well together with the form to fill in, and got a response a few days later, stating that the court had received it, and to contact them from now on if we had any questions about the appeal.
Thank goodness we’ve gotten past January – it seemed to just go on forever.
This last month has been really hard for both of us. It’s just so dark and miserable all the time, coupled with being in limbo, it really doesn’t help. Husband has stuck to his counselling which I am pleased about. We do have an employee support hotline you can ring for free through work so might do that on Tuesday. I am genuinely not quite sure how they can help though, but have promised Husband I will do it.
Good things about January were:
We managed to stay under on the grocery budget again which is great. We are continuing to eat the food my sister’s family sent with us when we left at Christmas which is helping a lot. Foodprint and getting reduced bargains have also helped us keep costs down.
Husband has stuck with the counselling and says he is feeling better in himself. I am so pleased he was brave enough to go.
Husband’s mother went to get some advice about our PIP tribunal at her church as they do a free advice service there and the adviser will see Husband and her next week and go through our application with them. They have also agreed to represent us at the tribunal which will help as they have experience dealing with tribunals.
We’ve made some sales on eBay and I got two focus group/food tasting gigs last week, so that £50 in the Travel Fund and £30 in Tesco vouchers I have squirreled away. I also got a train fare refunded due to delay and went and cashed that cheque on Friday.
Our mortgage was up for renewal. We wanted to go with Halifax as they give you £500 cashback when you switch your mortgage to them. Buuuut they would only agree to lend us half the sum we needed, so we decided to stay with NatWest. When we got our mortgage the interest rate was 3.19, fixed until March 2018. Our new rate is 2.79, fixed until April 2020. Oh and no product fee either, score!
At the same time, January hasn’t been great either.
Had a weird thick envelope from the DWP with all the paperwork they have on Husband and his assessment. Surprised and cross in equal measure that I wasn’t mentioned in their report at all even though I do the most of the support stuff. And that they felt that an indication of Husband’s ability is that he has a pet cat. Note the he. I was again not mentioned at all.
While helping Husband look for work I discovered that his workplace (who told us they didn’t have any hours for him in the summer, because there was no money due to parents not paying their fees) were hiring for two positions. I emailed the UNISON rep and waited over two weeks for a response. I then decided to email the other address we have for the rep and got a response – ‘oh year that email address closed in December’. Really? You have been emailing us regularly from this address, why didn’t you set up a forward on it, or at the very least got messages to bounce back so we’d know they weren’t being read? Anyway what the union has said is that this is the end of the line now. We have exhausted the internal grievance process the employer has, and the UNISON solicitors say we are out of time to take the employer to court.
My mother’s health is continuing to decline. My sister has said we need to meet up as a family when I go back in February to discuss what we do now. It may be that we need to take power of attorney now to ensure she gets the care she needs.
At my one job we have had an email to say that because they have not enrolled as many students as they had forecast, they are accepting applications from anyone in any department to either reduce their hours or take voluntary redundancy to save money. At my other job HR has informed me I have been overpaid ever since I started my job there and so I now have to choose between staying at my current annual wage but work to make up for it, or work my current hours and lose £336 a year. I contacted my UNISON rep to ask if they had any advice for me but they have not replied and it has been over two weeks. What is even the point of paying our union dues if you aren’t going to respond?
Had to refund two eBay purchases as the buyers have stated the items never arrived. 😡
All of this stuff has caused my mood to really dive this month.
I know it takes a while but we started the PIP process in May last year and we are still waiting. I am also very indignant at how, frankly, they lie about Husband and what support he needs. One thing I have done though is read several pages of this web forum done by the UK government on PIP and ESA assessments. Just pages and pages and pages of people who are going to tribunal or who have been incorrectly assessed/had their statements ignored. It is reassuring to know that it’s not us. That it is in fact the DWP who do this to seemingly anyone who dares try to claim PIP. I was also interested to read that Capita, the firm who did Husband’s assessment and processed his PIP claim, have issued a profit warning this week.
We got the union involved with Husband’s workplace in February and after a year of chasing them for this behaviour it just fizzles out. They’ll get away with discriminating against him and bullying him at work.
It makes me wonder why anything is worth it. What’s the point of filling in forms, documenting, giving examples, writing things properly and spending time editing it so it makes sense, and sticking to deadlines, and challenging things, if the answer is just going to be no?
What’s the point in doing anything, ever?
I have got to try and stay positive for Husband’s sake as I can tell that he gets upset when I feel this way and show it. Trying to keep it together and to be calm but it is becoming harder and harder to do every day.