Category Archives: Daily Life

Sep 29 2018
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Daily Life

Impatiently Recuperating

So, Phyllis the Hernia is no longer.

Two weeks on, the stitches are healing.

I can see my feet once more. I’m bruised, but happy.

It’s weird though, having this operation is a bit like being diagnosed with MS.

You certainly find out who your friends are.

Not many, but a few of the people I thought would send good wishes, if not come for a visit, haven’t. My other amazing friends, thankfully, have.

I’ve been lucky, I’ve had offers of help, visits, someone to put my bins out on time. Although raddled with Cabin Fever, I’ve had visits every day, bringing me news of the Outside World and a supply of blueberries (my must-have).

Yet being alone for the majority of the time has been interesting. I’ve set up a study schedule. I’ve replied to all my emails. I’ve ordered some covers for my garden furniture. I’ve watched every single episode of ’90 Day Fiance’. If nothing else, I now know how to apply for a visa if an American guy ever took a shining to me.

I’ve tootled around my cottage, counting cobwebs. I’ve snipped dead leaves from plants, sorted through kitchen drawers and, well, been a little bit bored.

I know I need to take it easy, but it’s a bit frustrating.

Perhaps I was a bit hasty in turning down appearing in TLC’s ‘Too Ugly For Love?’

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Sep 22 2018
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Daily Life

Judge, Jury and Executioner?

The day I got back home from my hernia operation, I received a letter from the Tribunal Service.

Probably the best ‘dreaded brown envelope’ I’ve ever had.

Without my knowledge, a PIP Appeals Hearing had been held in my absence and to cut a long story short, I won the case. And so ends 11 months of diabolical stress.

This would not have happened without the support of Stuart and Marie Nixon, and my MP, Anna McMorrin.

A reader of my blog put me in touch with Anna and she took up my case, expediting it through the system.

However, I could not obtain crucial evidence from my MS nurse, as the DWP had told them it would be disregarded. I have since found out GP’s and MP’s themselves are also being told that their evidence will be similarly disregarded.

This goes completely against the DWP’s own published guidelines:

From the DWP’s own PIP guidance booklet

Sending in additional supporting evidence

We want to use the widest range of evidence when we assess PIP claims to
ensure awards are made correctly and claimants are paid promptly.
It is very important that claimants provide us with any relevant evidence or
information they already have that explains how their condition affects them.

Information that will help us to assess a PIP claim
Reports about the claimant from:
• specialist nurses
• community psychiatric nurses
• social workers
• occupational therapists
• GPs
• hospital doctors
• physiotherapists
• support worker

Not only that, the DWP has admitted that Capita PIP assessors do not need expertise in medical conditions they assess.

So let me get this straight. We cannot submit medical evidence from those who know us best. And then they send us an assessor who has no real knowledge of our condition.

I call this out as blatant discrimination. It’s a guaranteed no-win situation.

Although my case has been resolved, this does not end here.

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Sep 10 2018
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Daily Life

Operation ‘Phyllis’

At last, Phyllis the Painful Hernia will be no more come an operation on Friday.

As if MS wasn’t enough to contend with, this hernia has been making my life utterly miserable.

I had a consultation at hospital two weeks ago; a kindly doctor made me lie on a couch and pushed the hernia all the way back in, before saying, ‘yup, it’s big’.

It’s a large grapefruit strapped to my stomach, a decent-sized Gwalia melon maybe. I’m tired of explaining I’m not pregnant, just fat with a hernia attached.

Anyway, at the end of the consultation I breathlessly asked when he could operate. His sad face told me everything. He explained that although my hernia was an urgent case, hernia operations were not.

Oh, ok. I’m thinking, oh well, I can wait til November. Maybe December? Not a chance. If I was lucky, maybe a year, probably more.

So, long story short, a kindly relative has paid for me to have the operation privately. I have to go for it, to keep working, as I’m struggling. Daily life is a wretched round of clasping the hernia, trying to do simple tasks and grimacing with endless pain.

I’m getting myself organised. They want to keep me in overnight, perhaps two, due to potential MS complications (fatigue probably, lol).

I’ve got some new pyjamas, two sizes up. I’ve ordered some low-carb snacks (always peckish when I’m lying around doing not very much), and I’m sorting through a stack of books to take with me.

There’s a pre-op assessment on Wednesday and I’m wondering how to ask if the surgeon (lovely man) could do a quick stomach lift at the same time. He might as well?

I’ve got ten days off work to recuperate, and I’ve lots of plans: read a whole bunch of study books, work out a timetable of research, catch up on paperwork. Unfortunately though, I’ve become addicted to ’90 Day Fiancé’ on TLC plus all the spin-offs so no doubt I’ll be watching that instead, but the intention is there.

Out of interest, I googled ‘Phyllis’, and in Greek legend a character of this name dies for love and is then transformed into an almond tree.

Spooky. I love almonds.

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Aug 09 2018
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Daily Life

Trials and Tribunals

Hmm.

What do you think would happen if you missed a DWP deadline, with no explanation?

Yep, you’d be ‘struck off’ and told to apply again, if at all.

Since first being contacted for my transition from DLA to PIP in October last year, I have hit all deadlines bar one – I was extremely ill and needed a couple of extra weeks to complete the forms.

The DWP were swiftly informed and sent out re-adjusted timelines accordingly.

Since then, I have had a decision, had a home visit, had another decision, had a mandatory reconsideration and been turned down on the points I made.

So now it’s going to a tribunal. I duly sent off the forms and had a letter back from the HM Courts & Tribunals Service. The DWP had 28 days to send a response.

That date was 3rd August. Hearing nothing, I phoned the Tribunals Service for information. I discovered the DWP has ignored them and will be sent a letter to prompt them for a response. Anyone here ever had a gentle ‘prompt’ letter with no sanctions attached?

This letter will give them an extra 14 days to respond. If they still ignore my case, a judge will decide how best to proceed.

If the DWP had responded on time, a likely tribunal would be held at the end of November this year, a full 14 months after first starting this endless, pointless paper trail. 22 weeks is the standard waiting time from lodging an appeal to it being heard.

With their non-response, it’ll probably be Christmas Eve.

To be fair, the woman I spoke to at the Tribunals Service was amazing; my story is nothing she has not heard before. Day after day she takes similar phone-calls, digging down in to the whole ‘lifetime’ award scenario for incurable illness, such as MS.

As an unexpected aside, a wonderful regular reader of my blog met my MP at a local event last week and outlined my case to her, even giving her my blog address. Long story short, I have since contacted my MP’s office and hopefully they will be taking up my fight, alongside my fantastically patient supporters who helped me fill in all the forms.

I’ve just dug out a letter from Capita about my home assessment. Clearly stated, there is the line, ‘if you fail to attend without a good reason, the decision-maker at the DWP is likely to refuse your claim’.

One rule for them ..?

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Aug 05 2018
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Daily Life

Life, Interrupted, For a Little Bit

It’s not much fun when you’re trying to get around with your insides spilling out, and I don’t mean through blogging.

This hernia is dominating everything at the moment and because of it, life is on hold. For a little bit. Hopefully.

I’m still working (in a wonky, stomach-clutching way), still running the house (just about) and still catching up with paperwork (me and the hernia get up early in the morning, best time of the day).

To most people I must look like the oldest pregnant woman they’ve ever seen, the hernia now taking on the appearance of a six-month bulge and still growing. I turn 45 the week after next and it’s getting plain embarrassing, especially when I’m accompanied by the Man Mountain, aka the very tall and muscle-rippled Teenager.

My summer wardrobe consists of jeans I can now fit, due to my low-carb eating but teamed with  big flowing tops, so that I look like a very fat, very pregnant woman who wobbles when she walks and trips over a lot. And wears tents.

Yup, MS hasn’t moved aside, in fact, it’s intensified. With the hernia situated right in the centre of my body, the neuropathic pain has increased ten-fold. I walk into walls a lot more and basically pinball around my house.

And as for the pain, I’m on the strongest painkillers my Doctor can give me and I look back wistfully at the gas and air I had when I actually was pregnant and about to give birth, never mind the epidural. Now, that would be utter bliss.

So, we muddle along, the hernia and me, the hernia (Phyllis – we’ve known each other so long now, she just has to have a name) always going first. Of course.

And it’s ever so slightly icky. I never knew anything about hernias until Phyllis took up residence and when I read up about it (thank you, Dr. Google), I was horrified. So it’s a delicate subject to bring up, especially when people ask me what it is. Eww.

I’m not seeing a consultant until the last day of August, after two urgent GP letters and a deadly committed MS nurse fighting my case. It’s anyone’s guess when the actual operation will be.

The only way I’m getting through this month before the appointment is to imagine myself without my melon-belly; I’ll be reborn, and I’m half-tempted to ask them to tummy-tuck me at the same time, seeing as they’ve kept me waiting so long, the meanies.

Plus, I’ll need to be off work for a couple of weeks, which will give me ample time to embark upon some University reading. Result.

Or binge-watch Jeremy Kyle and Homes Under the Hammer.

Probable result.

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