Yes, This Hurts!

Some of you will already know that I’m losing my motability car on the 23rd of April. I’m incredibly angry as this effectively leaves me housebound. So I’m having to spend money I can’t spare on buying an ‘old banger’ so I can get out.

So why is this happening?

  • Because this govt don’t want people on disability benefits
  • Because in conjunction with the MSM they have wrongly demonised disabled claimants as scroungers
  • Because they’ve moved the eligibility goalposts to make it even harder to evidence disability
  • Because their contracted “health assessors” (who aren’t experts in many conditions including mental health issues) are targeted on reducing benefit levels
  • Because their contracted assessors blatantly lie, misinterpret & make erroneous assumptions in their reports which are then treated as gospel over claimant evidence, scans, & consultant correspondence
  • Because they f*cking can & the MSM is complicit in covering up their lies

I know I’m not alone in this, I know other people who’ve been through this right to the appeal tribunal stage & won back their rightful benefits because at a tribunal you’re dealing with humans, not dwp targets. But I also know so many are just too ill, too tired, too anxious, too stressed, too alone, too defeated & too confused, and have given up without appealing even though they know they’d likely win. The fight is too hard & this govt are relying on that to cull numbers.

Almost a third of DLA to PIP claimants lose benefits, cutting their independence & their income. Disability charity Scope said these figures are “deeply concerning” and called for an “urgent overhaul” of the assessment process

“It’s deeply concerning that so many disabled people are facing a sudden drop in vital financial support,” said James Taylor from Scope.

“Life costs more if you are disabled. These extra costs haven’t disappeared just because there is a different assessment process.

“Without an urgent overhaul of the PIP assessment process, the system will continue to work against disabled people, instead of for them.”

I won’t go into my medical details here because much of it is very personal, but I cannot emphasise the following things enough;

The stress & anxiety have been absolutely horrendous. Imagine some unknown & unsympathetic stranger has complete control over your finances & your car, then imagine they won’t tell you for month after month what they’re doing next. I had my initial dwp letter in June last year. My assessment wasn’t until 1st December. I didn’t get a decision until February (and I had to chase them).

So I completed with Citizens Advice the initial Mandatory Appeal (which is known to be a pointless exercise but still took us two hours), unsurprisingly I’ve had a letter today denying the HR disability again & repeating what was said in the last letter almost verbatim. So next stage is to go to court for a legal Appeal Tribunal, which I understand from others can take up to a year.

My depression has absolutely been impacted by this process too, I’ve had more down days, the black dog nips a little closer when even thinking about not having reliable transport, & also of being accused of being a liar which is essentially what the dwp have done to me & thousands of other disabled people. I’ve been agitated & restless & I know exactly what the cause is.

My rage has settled down to a simmer now, but I was so bloody angry when I finally got my report copy. (Confession – I may have written certain rude words in pencil all over the margins). It’s outrageously poor.

Bear in mind here for a minute that in a previous life I ran huge contracts across the South West for (plot twist) the dwp, supporting the unemployed into work. The irony isn’t lost on me! But had any single member of staff in one of my centres turned in a report of this poor a calibre about a client some very serious conversations would have been had.

I’ve not picked it up for a few weeks because it’s still a bit raw, but off the top of of my head…. It’s a badly written cut & paste job, some of which obviously came from doing someone else’s assessment. It’s practically illiterate. The same phrases are repeated over & over like magic, as if when you say something stupid/untrue often enough it becomes reasonable or true. It contains as I said earlier outright lies, glaring inaccuracies and erroneous assumptions. There is no logic or consistency.

It took me a few days to work out that at least part of my anger was precisely because of the poor composition and lack of attention to the construct and meaning, as well as the errors. I know I’m a detail orientated person and these things matter to me, but surely in doing work that will actually impact people’s lives, wellbeing & financial circumstances everyone should pay attention to detail?

Almost a third of DLA to PIP claimants have lost benefits, cutting their independence & their income. Disability charity Scope said the figures are “deeply concerning” and called for an “urgent overhaul” of the assessment process.

“It’s deeply concerning that so many disabled people are facing a sudden drop in vital financial support,” said James Taylor from Scope.

“Life costs more if you are disabled. These extra costs haven’t disappeared just because there is a different assessment process.

“Without an urgent overhaul of the PIP assessment process, the system will continue to work against disabled people, instead of for them.”

Call me naive, but I guess I expected better from a government employed organisation when producing an official report on someone’s mental & physical health & ability. So yes, on top of everything else I was actually incredibly disappointed.

In my previous life with a fully functioning brain I would have torn this report to shreds in a couple of hours, referring to the DWP’s own guidance point by point to emphasise each and every error. Unfortunately with frequent brain fog, cognitive difficulties & fatigue unpicking this to refute it for a tribunal will take me weeks. But if needs be I will do so, with the support of friends, and the fabulous Citizens Advice, because even feeling as ill as I do daily I’m too bloody angry & stubborn to let this go.

I hope the above has made sense, I’ve probably rambled but this is the first time I’ve felt calm enough to write this out without ranting &/or swearing (a lot)!

Thanks to everyone who’s supported me, especially the lovely Essia who attended with me in December to literally & metaphorically hold my hand.

Quotes pictured above are from the incredibly useful Disabity Rights website which can be found here if you’re looking for further information

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Odds & Ends

CW: suicide

It’s almost midnight on Monday 18th March 2019, and I’ve just watched this week’s episode of Criminal Minds. Nothing odd or unusual about either of those things, at least on the surface.

Tonight’s episode had a special guest star who I’ve not seen on TV in many years, the talented singer Johnny Mathis. Very famous in the 70s for any younger readers who are thinking who?! He had/has a beautiful and very distinctive voice which even as children my sister and I loved, probably mostly because my Dad had his cassette in the car πŸ™‚

About fourteen years ago my sister’s partner, Andy, emailed to me (if my memory serves) a link to an mp3 of a song he’d been begged to find by Mary. She’d had no idea of artist or title, just remembered a snatch of lyrics about an “empty tube of toothpaste”. Well, bless him, he finally found it on a Russian music site (this was before YouTube got useful) and voila, here it was – Odds and Ends by Johhny Mathis for the first time since we were children.

Talking about it after we could both clearly remember listening to the song over & over in the car outside a local pub while Mum & Dad popped in for a drink*.

*Important historical note – in the late seventies children were as welcome in most pubs as the bubonic plague, and about as likely to happen. Crisps & lemonade in the car park in the summer were a treat πŸ˜‰

I digress – so OK, it’s nice that I saw this singer on TV tonight after all this time, and it sent me on a little trip down memory lane, but that’s still not odd or unusual.

Until you factor in the date.

As I’m writing these very words it’s almost midnight, by the time this has posted it’ll be the 19th March.

Which is exactly 12 years to the day since Mel died. I had no plan to post or blog, in fact the date wasn’t something I was conscious of, until Mr Mathis appeared in my living room this evening, looking older but still with his beautiful twinkly eyes.

So I’ve played the song through a few times, it’s made me remember happy days and laughter, and it’s made me smile, as well as cry.

Although written about the end of a love affair, in light of my sister’s suicide one part of the second verse feels particularly poignant;

“At least you could have said goodbye
You shouldn’t have run away
Were you afraid that I would cry?
My tears might have made you stay”

But – feeling sad is OK, grief is the price we pay for love, and I pay it gladly, because my heart would be so much less without her in it.

As I’m sure I’ve mentioned before I’m not religious, but I am spiritual, and I know in my soul that in some form or other we continue, energy does not die. To quote the writer Aaron Freeman;

“You want the physicist to talk to your grieving family about the conservation of energy, so they will understand that your energy has not died. You want the physicist to remind your sobbing mother about the first law of thermodynamics; that no energy gets created in the universe, and none is destroyed. You want your mother to know that all your energy, every vibration, every bit of heat, every wave of every particle that was her beloved child remains with her in this world.”

And whether you believe in gods, goddesses, divine beings, angels, a guiding light in the universe or the principles of science alone, whether you believe it was serendipity, fate, the angels or the stars that brought Johnny Mathis back into my life in this particular moment, on this day, I call that magic.

I feel blessed. πŸ™πŸ’™

Support:
For anyone in need of emotional and/or mental health support for low mood or suicidal feelings please, please, reach out. Call a friend, a stranger, me, a doctor, therapist, whoever but ask, help is out there for you. The Samaritans are available 24/7 in the UK & ROI for free, confidential support

Defined by?

A recent thread by @HannahPearl_1 on twitter questioned the suggestion from someone that “it’s important not to be defined by” our illness. Hannah went on to say she understood what the person meant but didn’t feel able to agree.

This got me thinking. ‘Defined by” is a term that crops up a lot in #ChronicLife circles & forums online. People tend to be either against it as somehow limiting, or in favour of it because our illness affects every aspect of our lives.

But what does ‘defined by’ actually mean? I’ve had a trawl through Merriam Webster online looking at meanings & synonyms to try & pin down a definition, and it’s a little slippery. But I love language so let’s give this a go!

Defined has a number of uses which vary the meaning:

  • to draw or make apparent the outline of
  • to mark the limits of
  • to point out the chief quality or qualities of an individual or group

It’s the second & third definitions I’m interested in here, because I think this may be where the divergent opinions around the phrase derive from. Let’s have a look at both…

To mark the limits of

If one applies this to living with a chronic condition I would take ‘defined by’ to mean that we acknowledge our illness affects us in ways that inhibit the way we live our lives. For me this meaning absolutely applies to my life. Inspiration porn often tells us nonsense like “the only disability is a bad attitude”, and this simply isn’t true.

Current popular ideology leans towards telling everyone they can be anything, do anything and there are no limits, which is a lovely sentiment in fairy tales but totally untrue in real life. We all operate within limits, whether they’re the law of gravity or simple genetics – someone like me with red hair, pale skin & freckles is never going to achieve a suntan!

That doesn’t mean giving up on ambition & dreams, or never setting goals, of course not. We all need things to strive for, to challenge ourselves, to work towards. What it does mean is that we can live our best lives by focusing on the possible, the achievable, and taking steps at our own pace to get there.

To point out the chief quality or qualities of an individual or group

Applying this to living with a chronic illness implies that we are characterised by our condition, that it becomes an intrinsic part of our being. Again, this undoubtedly applies to my life. I am no longer able to separate out my illness & disability from who I essentially am, and I don’t see that as a bad thing.

This doesn’t mean it is all that I am or can be, just that #chroniclife is entwined with my sense of self, my lifestyle & my place in the world and I’m very ok with that. I think this is completely natural human behaviour – if I flip back in time to when I was working my whole identity was entwined with my career in the training sector, which is why it was initially so very hard to accept having to effectively retire. I wasn’t sure who I was without being defined by what I did.

It doesn’t help that as a society we value people by what they do, not who they are, and we love putting people in boxes & applying labels. Would I let anyone else characterise me or define my limits? Not a chance. But as a chronically ill person with disabilities I’ve definitely earned the right to set my own.

And I choose to identify with my illness, my disability, and do so proudly. It’s taken me a lot of work & some fab therapy to get to this point in my life, and I’m happy to own it.

But you know what? If you don’t feel this way that’s fine too, surely one of the most important things we do is choose how to define ourselves πŸ’™

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 β€˜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 Β£3.8bn, or 2.1% of its total bill. Of this, 1.2% (Β£2.1bn) of its Β£177.5bn budget was claimant fraud. Full article here.

A Question of Kindness…

An author I admire, Vironika Tugaleva, asked a question of her followers a while ago – the seemingly simple ‘What is the difference between being nice & being kind?’ I fired off a quick tweet in reply & promptly forgot about it – the transience of twitter!

My response, which was very off the cuff, was this – ‘I think being nice comes from conscious thought, whereas being kind is unconscious & authentic.’

You may understand the moment of sheer (if irrational) panic when she tweeted me back today, saying ‘That’s an interesting distinction. Do you think we need both?’

For a few seconds my brain just fizzled! “Why did I say that, I’ve never really thought about it, what did I actually mean, arghhh!” It was roughly the adult equivalent of sticking your hand up in class at school then realising you’d forgotten the question πŸ™ƒ

(This only lasted for an instant & I’m actually amused by my thinking. In some dim recess of my mind I’m still, like most of us, waiting for someone to stand up & shout “fraud!” whenever I put my thinking out for scrutiny. Do we ever lose that completely?).

Once I’d taken a breath & re-read my initial response, of course it made sense to me. I’d like to think at the grand but young age of 48 I’m consciously responsible for at least some of my thought process! So my response was thus:

“I’d say yes – for me I think being nice would be saying yes to giving someone a lift even while internally saying “damn that’s going out of my way”, while when being kind I would offer without any thought of inconvenience. Does that make sense?”

(Just realising that even then I’d ended on a plea for understanding, note to self, post with more confidence!)

For me I think both are equally important, especially in today’s hurly burly rush-rush world. I think when we’re on auto-pilot through the day it’s easy to forget to be kind. When you’re perhaps juggling the school run, breakfasts, & getting to work, & you’re already running behind the neighbour asking if you could drop her kids off too is an immediate irritant. It’s too easy to feel like saying ‘fgs can’t you see I’m busy’, & I think a societal expectation of nice or pleasant behavior kicks in & makes you say ‘yes of course, more the merrier’ instead of throwing your smoothie* at her children.

*please don’t try this at home!

On the other hand, when we’re able to slow down & breathe, when we’re living more mindfully, our internal priorities tend to be more aligned with our conscious behavior. And that’s when our innate kindness is to the fore, when we selflessly offer to help others without first weighing up costs to our time, our schedule or our own expectations of the day.

Because being kind is heartfelt & authentic behaviour, it makes us feel good too, because we’re sending a little seed of love & kindness out into the world where it can perhaps take root and grow. And that’s better for everyone.

Wishing you all a joyful week

Namaste πŸ™πŸ’™

Vironika’s latest book, The Art of Talking to Yourself, is a beautiful read, it’s currently sitting beside my bed & although I’ve not yet finished it I’d highly recommend you treat yourself to a copy – it’s food for the soul.

My Autumn Soup…

I’ve been asked a number of times to share #spoonie friendly recipes. I’m pretty sure this is my first. But what a great one to start with!

For me there is nothing that says Autumn more than a gently spiced root vegetable soup. It’s comfort food, a cuddle in a bowl. It’s healthy & warming. And so incredibly easy to make! I’ll give rough guides to quantity, but I rarely weigh or measure anything, most of my cooking is about being creative, and using what I have in the fridge/pantry.

It’s also about ability on any given day, & using short cuts where possible. For example I can’t chop hard veg anymore, my hands won’t allow, so my basic food processor is an essential kitchen tool. I sometimes buy pre chopped veg & other prepped foods – it’s often the difference between me having a meal of some sort or eating toast!

(I will try to remember to do a follow up post about some fab kitchen shortcuts if you’re disabled &/or low on energy).

So…. My Autumn Soup

  • 4 parsnips
  • 5 carrots
  • 1 onion
  • 4 pieces frozen spinach
  • 1 tsp garlic
  • 1 tbsp olive oil
  • 1 tsp ground cumin
  • 1 tsp turmeric
  • 1 good pinch of cinnamon
  • 1 good pinch of black pepper
  • 1.5 pints hot chicken stock (veg is fine too)
  • 1/3 cup of split red lentils
  • 1/4 to 1/2 pint of skimmed milk
  1. Use the food processor to chop or slice veg, (except spinach) it doesn’t matter which, we’ll be blending at the end
  2. Warm the oil in a large saucepan, stir & gently fry off veg & onions for a few minutes. Add in the spices, stir through well then add in the hot stock, and the frozen spinach (it defrosts in the pan).
  3. Bring to a simmering boil, throw in the lentils, stir then cover & reduce heat. Simmer gently for approx 25 minutes. Stir in the milk then remove from heat.
  4. Allow to cool, then use food processor to blitz to a thick soup. That’s it. All done! Easy right?

Today this has made me five portions, at approx 147 kcals each. It freezes beautifully, meaning on low energy days I can have homemade soup in a few minutes using the microwave, and that’s a definite win.

Changing it up

Any combo of root veg &/or squash works brilliantly, I don’t think I’ve ever had one fail me and I’ve been cooking variations of this soup for years.

I love lentils, & they’re a great source of protein, fibre & potassium. If you don’t like them I promise you won’t know they’re there, but for me they add a lovely thickness to the soup. If you really don’t like them you could add a couple of potatoes instead, they thicken well too.

Spices are fun to play with, I love the North African flavour of cumin, turmeric & cinnamon. It just adds a little kick without being ‘hot’. But you could easily swap for ground ginger, smoked paprika or chilli, don’t be afraid to experiment a little.

I like to keep this pretty healthy hence the skimmed milk, you could use full fat or even cream & croutons if you’re feeling decadent!

This easily changes to vegan by changing the stock to veg & leaving out the milk. I’ve heard coconut milk is a nice addition but I’ve not tried it yet.

Comments welcome as always, let me know if you try making this 😊

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 πŸ™πŸ’™

Somewhere to Retreat…

Hi there, apologies it’s been so long, between one thing & another I’ve struggled to find find the motivation to blog recently, mostly energy & concentration levels low due to ME, plus RA hitting my hips – you know the drill. But…. I wanted to post something about my most favourite place to be (apart from my sofa), & a tweet certainly wasn’t going to cover it. I suddenly realised I had something I wanted to say, so back to my blog at last!

Where to start? The short version is that my lovely friend Ian (pictured below), the owner of my local bar – The Retreat– celebrated 30 years in business this weekend, which is frankly amazing in today’s economy, & mostly down to the fact that they’ve consistently provided us with excellent food & drink, amazing staff & service & so much fun. Exactly what you want from your local, which coincidentally is 250 years old this year! 😊

I turned eighteen in 1988 which was the year The Retreat opened, and yes, I’ve been using it fairly regularly ever since! I’m still slightly stunned thirty years have actually gone by & I’m not completely sure where they went! I’m still only 27, right? 😁

Anyways… Why I am writing this here? Because particularly since I became chronically ill this place has been a literal as well as metaphorical lifeline for me, and it’s a massively important part of my support network, I’d go stir crazy without it.

It’s somewhere I try & visit two or three times a week depending on how I’m feeling. It’s somewhere that as a lone female & a disabled person I feel completely safe. Better than that, I feel loved. I get table service & have my own personal cappuccino mug 😍

Most of my friend network is based from here, The Retreat has always attracted a wonderfully eclectic crowd of people as regulars & long may this continue. Ian also employs some truly fabulous staff & I love them all dearly, they’re family.

Whether I drop in early lunchtime or later afternoon there is never not someone I can chat to. Sometimes after two or three days in bed you just need human contact, and this place is it for me, it always lifts me.

Because of meds it’s very rare I have alcohol these days, I haven’t drunk “properly” for over three years, but I’m still made totally welcome for my coffees or soft drinks. My wonderful GP is well aware I use the place & often checks in with me on appointments that I’m still getting out at least a couple of times a week – we both know how important that is for my mental health, it’s way too easy to become isolated when disabled.

Any good pub or bar is always a community hub, & The Retreat certainly fills that role beautifully, whether you need help with the crossword or to find a plumber this is definitely the place to be.

So, I absolutely wanted to be present as much as possible this weekend, and I managed both Saturday & Sunday afternoons. Evenings are unfortunately a bit beyond me. But I’ve spent time with some of my favourite people in my favourite place, & that’s what was important to me.

Have I come home and crashed? Horribly. Everything hurts, I’ve barely moved since I got home this afternoon & I’ll probably trade at least a few days for these two afternoons in a row. And you know what? It’s worth every bloody spoon I’ve used, pain included.

Because sometimes life has to be about more than illness & pacing & doctors & tests & meds. Friendships & love are so important, I treasure them & the joy they bring me.

I’ve said before this is my equivalent of the TV bar Cheers, “where everybody knows your name”. So I guess what I really want to say is not only Congratulations Ian, or “I bloody love this bar”, but mostly Thank you, for being my respite, my social life, my Retreat.

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 πŸ˜‰

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 πŸ™

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. πŸ’™

The Gift of Being Present

There’s a campaign which raises awareness for ME (Myalgic Encephalomyelitis) called #millionsmissing. There will be events around the country next week on May 12th, with many sending in shoes which are laid out in public areas to represent those who are unable to attend. Others will post online, anything we can to raise the public (and sadly medical) awareness of just how devasting ME is. Details can be found at:

http://millionsmissing.meaction.net/

In essence there are millions of us across the world who feel we are missing from our lives. Many are bed bound, some for years. I often thank the stars my ME isn’t quite that severe, although there are many days I’m unable to walk around or get dressed, let alone leave the house. I’ve made a pact with myself that I will try to see other humans twice a week, even if just for coffee and a short natter, because I spend so many hours at home, alone.

I’m a natural introvert who has always enjoyed my own company, even as a child, so thankfully I don’t often feel the loneliness of many. But it is incredibly hard to maintain friendships when even a phone conversation can be exhausting, and sometimes the thought of replying to a message feels about as doable as climbing mountains. So I keep my pact with myself as best as I can, and will do for as long as I can, we all need human contact and shared laughter is a beautiful medicine of it’s own.

Over the past few years I’ve missed weddings, birthdays, lunches, and have completely lost my once active social life in the evenings. It’s difficult sometimes when you know your social group is all together having fun and you are yet again laying down quietly to conserve the precious little energy you have.

But…!! Today I wasn’t missing. Today I made it to a friends annual wedding anniversary barbecue (first time in three years I’ve been able to go) and it was so, so lovely. The sun was even out which is miraculous for a British May Bank Holiday! I managed to find myself a seat in a corner in the shade, I treated myself to a rare alcoholic drink and enjoyed a heavenly Mojito, surrounded by friends, dancing children, chatter and laughter.

I left when things were still in full swing but that’s okay, I know even on better days not to push too much and it was starting to get a little louder which I struggle with (background noise can be draining).

So I’m home now, windows open, sun shining, listening to the birds tweeting on a quiet Sunday evening. And I’m incredibly grateful for today, for these few hours of sunshine and laughter with people I love.

As always, Namaste πŸ™πŸ’™