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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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 😊

Medical Roller-coaster!

Where to start….! 

It’s been a bit of a medical and emotional  roller coaster the last few weeks, with lots of different issues and when your medical needs aren’t simple something most people take for granted like <GP = Answers = Meds> becomes a dim and distant nostalgia. 

To be honest this is probably more of an update post than anything, but it hopefully explains why I’ve been a bit quiet with regards to blogging and my Facebook page, my focus out of necessity had to turn inward. And of course the stress has affected my RA and Fibromyalgia, as well as the ME/CFS so there’s been a lot of Fatigue which just shuts me down. 

Now the worry has lessened I’m feeling a little more alert, which is always welcome. So hopefully this will be fairly lucid. Essentially three key things have been going on, a rheumatologist appointment has led to some initially surprising decisions, there have been serious concerns about my lungs and I’ve had a plethora of ongoing joint problems that I’m just kinda fed up with. 

You may recall I started Humira, my fifth RA med and my first biologic back in September. Unfortunately it did absolutely nothing for me, and in fact my DAS score increased between November and February. My rheumy has decided to stop treating my RA for six months, so a review is planned at that point though obviously if anything horrid occurs in the meantime we can reassess. My initial response was “What?!!” but having discussed this in depth with my locum GP I’m now feeling much easier about her approach. Of course I have RA, there’s no question about that, I’m RF+ and AntiCCP+ and inflammation has shown up along with raised CRP and ESR levels. However recently although I definitely still have RA pain, particularly in my hands and feet my bloods are low and there’s very little sign of synovitis (swelling). 

So my rheumy wants to try a different approach, rather than just adding another biologic which are very strong meds she wants to focus on treating my Fibromyalgia to see if that helps narrow down what’s actually causing the majority of my pain. Whilst I am concerned about being off RA meds for this period I understand her rationale, and my GP and I will be paying close attention to my symptoms during this period. So I’ve started a Fibromyalgia med, Lyrica (Pregablin) which will take a few weeks to kick in, and we’re back to to the very familiar wait and see. 

My lungs have turned into an “interesting mystery” (quoting the doc), I’ll try and keep a very long story as short as possible, beginning of October I started a dry cough. When this hadn’t gone by December my GP blasted me with antibiotics just in case and gave me a steroid inhaler. This stopped the cough, but when I tried to stop using it twice daily in January the cough was immediately back. A lung xray taken in December showed some chronic scarring, which hadn’t been there last September. This caused me to thinking I had some very serious problems, especially as since Christmas I have been steadily getting more breathless. 

An attempt at a Spirometry Test was a bit of a failure as I couldn’t breathe well enough to register results. My Locum GP has been absolutely amazing, I had about 45 minutes with her on Thursday last week, then over an hour on Friday! She, my rheumy and my GP who is working from home (back operation) have all checked the xrays and they don’t feel there is any cause for concern which is a huge relief. However my breathlessness is ridiculous, getting up and making a cup of coffee leaves me struggling. So we’ve upped the steroid inhaler dose, and I have a ventolin inhaler to use if needed. 

Next week I have oxygen sats test booked as they looked borderline low last week, and the week after I have a repeat spirometry and an ECG – we are basically working to rule things in or out by process of elimination. It’s a slow process but I’m feeling totally reassured, heard, and supported which as anyone who deals with chronic illness knows makes a massive difference to our sense of well-being. 

So that’s where I am to date, less worried than I was and still putting one foot in front of the other, albeit very slowly! The joint issues may or may not be RA, my left shoulder is probably OA as no inflammation shows under ultrasound, my left hip likely bursitis, my knees which have been dreadful seem to be tendon problems, my feet are waiting a podiatrist appointment, I’ve had one through for orthotics. I’m getting a new referral to physio, and I’m chasing an appointment with my pain clinic consultant regarding next steps for my back. Oh and we’re booking an xray of my cervical spine as I’m in pain and losing movement. 

And what do I say if people ask? Yeah, I’m fine thanks! If I started listing this lot they’d be asleep. What have I learnt in the past few weeks? A couple of important things:

  • One is not to panic until someone really qualified tells you to
  • Two is not to assume every ache and pain that arises is RA – it’s actually important to discuss any new symptoms with your GP
  • Three is to remember that we are at higher risk of heart and lung disease as RA patients and it’s really important we look after ourselves as best we can

I’ve completely changed my diet the past few weeks, incorporating much healthier foods and ditching nearly all processed sugar, and both my Diverticulitis and my scales have appreciated the change 🙂 

Namaste my lovelies, stay as well as you can 🕉️ 💙

Postural Hypotension

Well there’s rarely a dull day here at the moment, after lunch Tuesday with my lovely Dad I had nothing else on all week which is so welcome, my spoons were vanishing, need sleep!  Tuesday I also saw a locum GP, who was great, she listened, checked me over and we think we have a diagnosis – yes another one! 

I’d had odd very wobbly moments before, but last week they started happening every evening, sometimes twice, and I was getting quite worried. Felt like the inside of my head was spinning, usually lasting about two minutes or so. My biggest concern immediately was please don’t stop me driving, I’d be so stuck 😕

I, fortunately in a way, had one episode  Saturday evening while out with my friends, and they all said I immediately went white, not something I’d notice at home on my own. 

The doc is pretty sure it’s Postural Hypotension. Which basically means when I go from lying or sitting to standing my BP doesn’t catch up quickly enough, hence the dizziness. 

She’s asked me to take BP readings for a week am and pm, because my BP looked high in the surgery. This is a little worrying as I’m already on BP meds for Hypertension, ie high blood pressure and it looks like they may have stopped working? At least I’m being looked after. 

In the meantime I just need to take my time when getting up. Talk about feeling 90! 

Get Well Soon Doc! 

I know I’ve mentioned in blogs before that I’m extremely fortunate to have a wonderful GP, she knows me well, is incredibly supportive and I’d be lost without her. 

I had a phone call yesterday afternoon to let me know she’s gone off on long term sick with a back problem. Anyone who is chronically ill will know the immediate panic and anxiety this caused. 

Most people probably see their GP a couple of times a year if that. I probably see mine every six to eight weeks, with intervening phone calls and occasional texts if something new crops up. My medical history for the last few years is stupidly long and complex, and this is where the problems start with seeing another GP, however wonderful they are. She knows my story. 

I have RA, Fibromyalgia, Degenerative Disc Disease, IBS, hypertension, post Phlebetic Syndrome, Sjorgens Syndrome, ME/Chronic Fatigue Syndrome, Depression & Anxiety, intermittent insomnia, a Hiatus Hernia, Gastro Esophageal Reflux and am currently being treated with a steroid inhaler for a chronic cough, as well as ongoing painful bowel issues. 

My GP knows (despite all the above) that I’m not a hypochondriac and I never bother her unnecessarily. I am educated about my health and my meds, and usually know if something is wrong what it’s likely to be related to. When I go in to see her I always have a little list on my phone, we zip through it and she’s happy if I go over the set appointment time. 

The GP I’m waiting for a call back from today (possible onset of vertigo?) knows none of this. Without looking at a list they know nothing of the 18 repeat prescriptions I currently have either. 

The thought of trying to get them to focus on my immediate concern and ignore the other stuff is a  bit mind boggling, but I know this weird dizziness is not related. Then I have a ‘catch up’ appointment booked on the 18th which will be with a GP I’ve thankfully met before who seems nice. I’m just hoping she doesn’t think I’m nuts when I get my little list out – bowel pain ongoing –  meds made things worse, drops for sjorgens are helping –  can I have more please, yes I take tramadol daily, I need more of that too. Chest xray results please, if I miss a dose of my steroid inhaler this cough starts up again. Oh and by the way I need to update you from my appointment with the fatigue clinic, and my hands and back have been exceptionally painful for the past couple of months. 

Not quite so simple as simply popping in once a year when you get a virus. 

So for a multitude of reasons I’m sending healing blessings to my GP, and I very sincerely hope she’s better soon!