Whispering Darkness…

Some of you will be aware I write when I need to process. Never more necessary than this week.

I’m struggling right now, both physically & mentally. This is totally down to our disastrous current government. I make no apologies for being political when those very politics are affecting my physical & mental health.

I received notification in June/July this year that even though I had been previously awarded lifetime DLA (Disability Living Allowance) for my chronic & progressive conditions, due to govt changes to the benefit system – namely the introduction of the new PIP (Personal Independence Payment) benefit – I had to reapply. Yes, reapply.

You’d have thought the sensible thing to do for people with lifetime disability awards would be a simple transfer, but no. Reapply as if you’re a completely new claimant. There was an option to allow them to access your previous assessment records for DLA to support your claim – “if they are still available”. Yes, it appears the DWP may have failed to actually keep records properly. Who’d have guessed.

I want to be clear here before moving onto the effect this process is having on me personally – the only reason the govt have rolled out PIP is to get disabled people off benefits. It’s that simple & that barbaric. A UN report in 2017 “accused the Tories of creating a ‘human catastrophe’ in the UK” which violates disabled people’s human rights, the text below is quoted from The Canary, the full article is available here

The UN are currently carrying out another investigation into UK poverty and the impact the current government has had on this, looking at key areas including these listed below – text again is from The Canary, full article is available here.

I kind of wanted to be clear on this – this is not me as a benefit claimant just being awkward or heaven forbid “ungrateful” – but a widely acknowledged truth. Disabled people are being disadvantaged by this government, the facts prove that. The United Nations knows it.

So, back to to this process. I had to call to apply after receiving the letter which was incredibly difficult for me – anything to do with benefit changes causes me severe anxiety – I was physically shaking when I rang, despite being prepared by Citizens Advice on what to expect so I had the information I needed right in front of me. It took a stomach churning twenty minutes. Just to ask for the form.

Once the form arrives in the post there is a four week deadline for completion. The earliest appointment Citizens Advice had was for almost six weeks away. So again I had to go through the ordeal of phoning, this time to request an extension which thankfully was granted.

I cannot begin to describe the vile process of completing that form, even with a trained & sympathetic advisor. I can’t write for any length of time myself because of the RA in my hands, so they had to complete the form for me. It’s invasive, incredibly personal & embarrassing. Answering questions on what medications you take, their side effects, how often you manage to wash yourself, use the toilet, leave the house, eat, get out of bed, the assistance you need but don’t get, and the intimate details of every symptom of your conditions & disability from bowel movements to insomnia, light sensitivity to Myoclonic Jerks.

The awful thing is on a daily basis you are mostly able to avoid thinking about the vastness & sheer weight of multiple conditions & symptoms alongside chronic unceasing pain, you simply deal hour by hour because that is manageable, mostly. This is like plunging into the abyss with your eyes taped wide open. It’s not an exaggeration to say it’s traumatic.

Every tiny personal detail of your life is discussed & transcribed, ready to be pored over by faceless strangers – without the requisite medical knowledge – but with the power to remove your income & your car & leave you destitute & housebound. Yes, it’s that f*cking huge.

So – my appointment with the lovely & very empathetic lady at Citizens Advice? Three hours. Three grueling & exhausting hours. And I wasn’t done yet.

It took me another two hours at home to go through, copy & annotate twenty-seven separate pieces of medical evidence going back about 18 months. Scan reports, surgical reports, consultants letters, radiography reports, it all went in there. This took me about three days.

So finally it all went into the post. I had a text on the the 8th August to say my form had been received.

I then heard nothing until Saturday 3rd November when a letter dropped through my door. Yes, just over twelve weeks, or 3 months. Every single day since August my anxiety has grown worse. My depression is also pressing at the edges of my consciousness, whispering of hardships & darkness. My GP is fully aware & we’re monitoring my mental health, the frustration is that we know the exact cause & have no power to remove it.

So the last couple of days I’ve basically gone turtle. I’ve retreated inside my shell, alternating between Netflix & reading depending on my ability to concentrate. The minute I stop either my thoughts are immediately back to this planned assessment. I feel dreadful as stress flares everything. Fortunately I have a wonderful friend who has agreed to be with me for the appointment which is incredibly helpful.

My next task which I couldn’t bring myself to do today is to call them & ask why they’ve not taken on board the request on the form from Citizens Advice & myself for a home visit, and see if its possible to change it. Honestly from what I’ve heard I’m not particularly hopeful.

Then I need to prepare, think of this as a job interview but twenty times worse. Its so easy with fatigue, anxiety & brain fog for me to use the wrong words, forget whole symptoms & conflate conditions. It’s basically a quiz about me where I can get the answers wrong much too easily. I’m terrified of this, and not without reason – so many horror stories of poor assessments are a matter of record.

One last note – DWP or whomever, if you’re reading this and thinking even for one second “well if she can write a blog that makes sense she can work” you are stunningly misinformed about what being chronically ill & disabled looks like.

This, as with many of my posts takes hours – but never all at once. Initial thoughts, a few notes, finding links, remembering what the hell I was talking about when I lose thread mid sentence, stopping for sleep or rest, editing, rechecking, a final read through to make sure I haven’t made a compete idiot of myself. It all takes precious time and energy spread out over days, to do something that when I was well I could have rattled off in ten minutes.

This is my reality, please simply believe me.

PS – for anyone who has bought into MSM (Main Stream Media)’s outright fairy tales about benefit fraud & demonisation of claimants – here’s the real deal from the government’s own data. A tiny 1.2% of benefit claims are fraudulent.

Like HMRC, the DWP also estimates fraud and error for its benefit payments. Its most recent estimate shows that overpayments to claimants in 2017/18 were £3.8bn, or 2.1% of its total bill. Of this, 1.2% (£2.1bn) of its £177.5bn budget was claimant fraud. Full article here.

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Butler Wanted…

Wouldn’t this just be fabulous? Simply the fetching & carrying would be a total blessing! I’ve gone with

  • Coffee because, well, coffee
  • Great food because my appetite is horrendous & cooking takes too many spoons (pun intended 😊)
  • Secretarial skills – oh to just dictate blog ideas at random hours, this would be a real treat, I might even get that novel done!
  • Who doesn’t want a psychic provider of heating pads & ice packs?!
  • Massage because, well, massage
  • Invisibility, on demand obviously, so I keep my sense of space

So what do you think I’ve missed? I’m sure there is loads more a spoonie butler could do, let me know what your top skills in a butler would be?

Namaste 🙏💙

Always trust your gut…

I’ve tweeted & shared quite a bit about my recent hospital cock up experience, but as it’s ongoing & probably relevant to a number of us living #chroniclife I decided to try and lay the whole saga out in one. Here goes!

Brief history – I started having back pain about two months after my RA diagnosis, having never had an issue before – so to those who think RA doesn’t affect the spine I say nonsense – I’ve heard too much anecdotal evidence that says otherwise. Plus my original orthopaedic consultant said “of course it can”.

Investigations showed one herniated disc, another dessicated. I was told this was the probable (!) cause of the mechanical pain but nothing much can be done. Despite the fact that this back pain is the main reason I can’t walk without crutches, or on some days at all. To be fair we have tried Facet Joint injections and a Caudal Epidural without success – I’m annoyingly resistant to steroid treatment.

Anyways about two years ago the sciatica started. It has never let up. Obviously it waxes & wanes but that literal pain in the butt, along with pins & needles and numbness in the foot is a constant companion in everything I do, particularly standing or sitting. It started getting bad enough last year that my GP referred me into the musculoskeletal assessment team, who referred me to my current consultant.

After meeting in March we decided to go ahead with an L5/S1 Nerve Block – essentially injecting local anaesthetic plus corticosteroids into the sciatic nerve root in my spine. We discussed at the time my slightly higher risk of complications including paralysis because of my anticoagulant therapy. I liked him a lot because he was frank and open and simply told it how it was – a rare trait in consultants in my experience.

Prior to receiving the actual appointment I had a telephone pre-assessment call from the hospital. I quite clearly remember her saying during that call that “you’ll need to stop your Rivaroxiban for two days prior, the consultant has noted five days but that’s not necessary”. So, as told, I stopped my med two days prior.

The process is that everyone on that day’s list arrives at 7.30am and waits. This is an added nuisance as you cannot drive yourself, necessitating calling in favours from friends. But I arrive on time, and wait with everyone else (while becoming slightly paranoid about people sniffing & coughing their germs around).

I get called through by a nurse into a cubicle for pre-op checks, blood pressure, sats etc. She’s very busy and has to leave for a while, and while waiting I can clearly hear other patients being asked about any previous history of DVT’s. I get sent back to the waiting room, then brought back to another cubicle to see my surgeon, let him scribble on my back and sign consent.

At this point I change into the ever glamorous hospital gown and wait. Niggling in the back of my mind is that no one has checked on my anticoagulant meds or asked me about DVT history, it just doesn’t feel right. So when the anaesthetist comes to take me down to surgery I ask if she could please check that all was OK with me stopping my med two days before?

I am so glad I did – always trust your gut!!

The answer was a big fat no. It should have been five days not two. This would have been picked up if the lovely but very busy nurse hadn’t missed the DVT question off the checklist. The booking office should never have contradicted the consultants instructions. Comedy of errors indeed.

Within minutes I had nurses apologies, booking office apologies, anaesthetist apologies. I think they were all worried I was going to be angry or upset or both. What I actually did was stick in my headphones & listen to a short meditation from the fabulous Calm app – my initial anger response drifted away and I found my peace. So much better for me, as well as others. Anger is simply not helpful.

My consultant came back to explain exactly why he couldn’t go ahead – two days would be fine for, say, a knee operation – if I bled it would be from the wound. But had I bled from the point of the injection into my spinal column there would be nowhere for the blood to go, a pressure bubble of blood would press on the nerves and I could have been paralysed from the waist down by the next morning. Obviously not ideal! He was not a happy bunny, and he thanked me for having raised the question.

So, he arranged a new appt with me there and then for two weeks later, and duly cancelled, I went home.

On the following Friday he rang to ask if I’d heard anything from the booking team, I said no. He advised me again five days off my med, and explained that although this was a nuisance for me personally it had highlighted some issues with pre-assessment checks for patients on anticoagulant therapy so it had been a good exercise for the hospital as new procedures were being clarified across departments. I almost felt important 😉

This morning (Monday) he called again, wanting to check on my DVT history to decide if interim therapy such as fragmin would be needed, and told me that the anaesthetist would call me later to advise. I kinda guessed by 5pm I wasn’t going to hear from them – annoying.

However at half six this evening he rang me, apologising that no one had called me back, explaining he was calling himself as he hated it when that happened. He’d been in discussions with the haematology dept and they had decided no interim therapy was needed, so keep not taking the meds & he’d see me on Friday morning.

If I didn’t already like & trust this doc I would now. He’s obviously got his patients best interest at the core of what he does and that speaks volumes to me about him as a surgeon. I have absolutely no hesitation about placing myself in his surgical hands on Friday, despite the earlier errors by others, because he has been honest and professional with me throughout.

And you know what? The cancellation was a pain, but if it means both myself and future patients will be safer then it was absolutely worth it! Sometimes stuff happens for a reason 🙏

Update – 8th June

I’m sitting post surgery on the ward, all done. F*ck me that hurt, don’t let anyone tell you otherwise! But – they’re confident it went well, so I’m waiting to be assessed for discharge in about half an hour depending on the feeling being back fully in my leg, which currently feels kind of heavy & a little unresponsive – I’ve been assured this is perfectly normal!

Now it’s just fingers metaphorically crossed that this actually works and stops the sciatica. Review in six weeks. 💙

Why I Don’t Do ‘Stuff’….

This may sound a little odd but I often forget the reason my pain levels stay manageable is because I’m very careful with what I do & don’t do. Today was one of of those rare days when my mind was awake, I had some energy and was in the mood to tackle a couple of little jobs at home.

 We’re not talking plastering walls and laying brickwork here – but what in my old life would have been maybe an hour or two’s pottering after work! I painted my bathroom windowsill, put a couple of new screws in to fix and touched up the paint on my hall radiator cover, and painted a piece of wall approximately 7ft x 6ft using a step stool.
This wasn’t all at once, I know energy wise I have to be very careful because of the ME. I was sitting down for doing at least half of this, and I took long coffee breaks in between each task. This really wasn’t hard work – or at least it didn’t used to be.

However…

I’m now hurting everywhere. Fibro & RA are both flaring. My feet feel like they’ve been beaten with a hammer, both hips are shouting, my back, shoulders, elbow and neck are all complaining loudly and my hands are throbbing. Plus of course I’m now exhausted.

The really silly thing is I genuinely forget sometimes there’s a damn good reason I’ve slowed down – I have to, because if I don’t, ouch. I really must remember to actually tell my rheumy about this at our next meeting!

These days most of the time I get friends round or pay someone to do this stuff for me, which is obviously the sensible option as it keeps my pain down and protects my joints. But when it’s “just” little odd jobs (that in a previous life you’d have tackled on a Sunday morning in no time) not being able to to do them is really frustrating. Being able to rely on others is wonderful, but having to rely on others is not so great and you do worry goodwill will eventually run out! And of course paying professionals to do work for you is yet another part of the expense that is living with disability.

It always costs one way or another.

 Despite all this… I’m feeling a rare sense of achievement! Three things that have been bugging me for months are finally off my to-do list forever. Will I do it again? You betchya – probably in around three months when I’ve forgotten again 😊

Facet Joint Injections – the Low Down! 

Am currently laying on a hospital trolley post procedure, so I thought I may as well lay this out here for anyone else who is facing the option, or just likes my ramblings 🙂 

My back pain is literally disabling. It’s because of my back pain that I can’t walk, and either use crutches over short distances or my scooter for longer. The last time I tried walking without my crutches was over a year ago, and I was in tears of agony after a very short time. The pain starts in my outer left hip, then sets fire to my lumbar spine which is where the actual mechanical damage is. Using crutches keeps weight off my left leg, so stops this process. However I’m constantly in pain in my back, standing hurts, sitting hurts, etc.  That’s not even a moan, I am so used to this now it just is. 

So the damage. My L5/S1 disc is prolapsed (herniated),  the two discs below that are completely dehydrated. This is known as Degenerative Disc Disease, DDD essentially means my lower lumbar spine is bone on bone. And that’s the bit that hurts! 

So today as a day patient I have just received two sets of facet joint injections.  In simple terms the facet joints join the vertebrae together, they contain synovial fluid, and they become inflamed,  just as any other joint can  with RA.  Is this caused by RA? Opinions do vary. However the disc degeneration is known to not only be more common in RA patients, but to progress more quickly.  And I don’t believe in coincidences, my back pain started about two months after my first RA symptoms. It would seem strange to me if the two weren’t linked, and my orthopaedic consultant said YES. Good enough for me. 

Once the local had been injected (small ouch) the consultant worked closely with a radiographer who was taking almost continuous xrays so she could direct the four separate injections in obliquely to exactly the right spots of my spine. I could see the xrays on the screen beside me which I  found fascinating, but I’d recommend turning  away if you’re squeamish!

Did it hurt? Yes. Each time the needle got near the affected joints. I kicked the table I was laying on at one point, but I  managed to stay still and not swear out loud, which I’m calling a major win!

Half an hour on a bed then discharge. They advise having someone drive you and stay with you in case of adverse effects. I know different people react differently to medication.  Having had this done today I’d happily drive myself there and back if there’s a next time. 

As it was my amazing Dad drove up from Wiltshire to take me, bless him! Thanks Dad 🙂 

Prognosis? Apparently it can take up to  two weeks to know if this has worked. The options are – it gets better, nothing changes, it gets worse. No guarantees in any direction.  I’m keeping in mind that I’m generally steroid resistant, but as this is applied directly to the problem as it were it may be very different. I hope so. So why go ahead with no guarantee of an outcome? 

Lots of reasons. Mainly boiling down to life’s too short. If there’s a chance of long term pain relief I’ll take it please. 

If you’re looking for further reading Spine Health is a site I have found really clear and helpful (no affiliation). 

Edit – as I check this for the usual typos before publishing it’s about four hours post procedure, and I’m just about to pop some tramadol. Just the usual pain level at this time. 

*As always these are simply my personal experience and opinions and should never be taken as medical advice.