Category Archives: 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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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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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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Being A (Patient) Patient

A couple of years ago, after meeting my neurologist for the usual review where we count up the brain lesions, he handed me a leaflet.

Not the usual ‘Coping with MS’ thing, it was a shout-out for volunteer patients to assist medical students with their fourth year clinical exams.

Always up for a challenge and happy to pay back even a tiny bit to our stupendous NHS, I signed up as soon as I got home.

Yesterday was my second time and I was assigned to the ‘Neck Station’, next to the ‘Eye Station’. I was picked up by taxi and whisked to morning coffee (sadly denying myself the chocolate biscuits, pesky low-carb plan) and a chat before the exams started.

I was to present with a sore neck and difficulty swallowing (not too far from the truth sometimes), and was paired up with a doctor. We ran through the scenario, he prodded my neck (weirdly, it seems the Grave’s from Campath might just be playing up again, as I had a ‘thick neck’), so getting into the role wasn’t too much of a stretch.

And it really is like acting; I saw fifteen trembling medical students and of course, it had to be new every single time. I wiped my brain (amazingly easy thanks to MS) before each came round the cubicle.

By student seven, I realised what they should be reporting back to the doctor and  willed them to answer correctly; I now knew more about neck swellings than I ever thought possible. They all made me swallow water, stick my tongue out, stand up, sit down. A bit like a PIP assessment but much, much more fun (free neck massages, bonus).

The main downside was the unexpected request to roll my trousers up. Hmm. Hairy legs covered in bruises from my usual habit of walking into doors and walls. A great look, and letting them do it fifteen times was awkward.

Anyway, if you ever get a similar request, I’d give it a go. Apparently the lunch is fabulous (I was stuck with my packed lunch of olives and protein). One particularly wonderful student recited back to the doctor that I was 34, relaxed and happy.

I may not have shaved my legs, but having ten years shaved off my age was priceless.

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The One Where We Almost Go Under

I work hard, and so does my Boss, aka Best Friend.

He employed me when no one else would and understands more about MS than anyone I know.

He knows exactly why I can sit on a staircase and nod off within three minutes, or indeed a pile of plasterboard.

He can see my brain go numb when we talk about the next phase of building work. He even picks me up every day to make my life easier, and there’s always a fresh coffee waiting for me in the van.

So when we arrived at our latest project last week and I was so bone-tired I slumped on the doorstep, I had no idea of what was to come.

After a quick catch-up chat, he opened the van; his drill is always floating around at the back somewhere. But this time it wasn’t. Weird. Searching for it, he pulled the ten sheets of plasterboard he had bought the day before to one side, as they were hiding the shelves.

They were all empty.

Every single power tool was gone. Stolen. Half the van was bare. Someone, probably several people, had emptied his van of everything they could carry. Fifteen to twenty power tools were stolen. The cost runs into thousands, having been built up over the years.

We were left with a bag of hand tools and a radio.

I don’t think I’ve ever witnessed my friend so broken. His van is precious, and without it we don’t really have a business.

So, to whoever walked or drove off with a van full of tools, neatly boxed, perfectly stacked, you have absolutely no idea what you have done.

I’m trying not to be bitter. Bad things happen. But to clear out an entire van is beyond cruel. It’s a livelihood. Several.

A few days on, our mood is still sombre but we’re managing. We’ve pulled in favours from friends in the hope that we don’t let our customers down. But every time I look in the back of the van and see the empty spaces, my stomach lurches.

It’s a massive blow but I hope we will come back from this. The timing is terrible, MS is playing up and we’re scrabbling around with one new drill (hundreds of wasted pounds) and a list of prioritised tools, a kind of shopping list. What do we need the most, right now? (I voted for a little hand-held blower, the Boss for an angle grinder, gah).

To be robbed so comprehensively is utterly breathtaking.

Sadly, at least I now have an idea of what to get The Boss as a birthday present next month …

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