Nourishing the Soul

Posted on by SingleRheum

As this is my first blog post in ages, hello! Combination of reasons which I’ll maybe touch on another time, but long story short the urge to write just came & it can never be ignored so here we are again.

This was inspired in particular by a twitter post from one of my favourite historians, Dr Janina Ramirez, who is a joy to watch on TV & follow online; she comes across to me as bright, passionate, quirky, kind, & beautifully her own person, & I admire her very much. Her post is below, I’ve also typed out the text in full for anyone using screen readers.

I’ve not been on twitter much. It’s a combination of things. Anxiety over the state of things. A Covid response & going more into myself. A loss of interest in promoting myself & thinking my own interests pale against the concerns of so many. But I still send you all love ❤️

Dr Janina Ramirez 28 August 2020 twitter

Basically what happened is I started writing a simple reply & realised I had thoughts. Lots of thoughts – In essence what I wanted to say to Janina was simply please do whatever you need to keep yourself as well as possible. It’s what we all should do. And if that means breaks from news or social media then of course that’s OK 😊 These are trying times for us all, when you are able to share lovely art it brings me & others joy, but I totally understand that has to be when it feels right to you & you have the mental energy & space to do so.

But I feel quite strongly that the second point Janina makes is a wider reaching conversation; namely “a loss of interest in promoting myself & thinking my own interests pale against the concerns of so many”. I’ve seen other people in the public eye (I hate the word celebrities), people who I believe are decent & kind people make similar comments over the past weeks & months. It’s totally understandable, 2020 has been a shitstorm of epic proportions & by direct comparison is sharing a piece of art or poetry or a song or a dance routine or a recipe or a fabulous cocktail important when held up against against Covid-19, BLM, or the state of Politics?? Definitely not, & at the same time Abso-fucking-lutely.

I believe when we stop feeding our souls we start to lose our humanity. When days are dark & times are troubled & we’re uncertain about tomorrow is exactly when we must make time to nourish the best part of ourselves, the part that can lose our eyes in a painting for hours, be it Picasso or Van Gogh. The part that allows music to transport us to far off times & places; poetry to allow us to feel empathy & connect; comedy to remind us to laugh & that life itself is often wonderfully silly; ballet where dancers take flight to tell stories with no words; history programmes that continue to investigate our past & allow us to learn & improve & have hope for our future.

Often it’s what might seem trivial in comparison to the “big stuff” that brings us our daily moments of joy & the strength to put one foot in front of the other & smile, if we can but pause to take the time to notice.

So to end, I would ask anyone, not just people with a large audience, when you feel able to please share your small stuff – the cakes you’ve baked, the photos you’ve snapped, the art you love, the stories you write & the music you rock to, & if it happens to be what you do for work please don’t apologise. If you bring even 10% of your viewers, readers & listeners a little joy & a smile to their day then I think that’s fantastic!

Namaste 🙏 💙

Disability Friendly Cooking – Tin Can Cook

Posted on by SingleRheum

Tin Can Cook: 75 Simple Store-cupboard Recipes

1 June 2019 Format: Paperback

This is the 5* review I’ve also posted on Amazon & Goodreads.

Anyone who follows me on twitter will know I’m a big fan of Jack Monroe & her recipes, this is the third cookbook of hers I’ve bought & it’s already loved!

So impressed with this cook book. Written in Jack’s inimitable and endearing style it was intended to help those living on food bank parcels or with very limited budgets to create simple, nutritious meals in a short time and it does this beautifully. Pitched at the novice cook but in no way patronising for those with more experience it’s a lovely read and I already know I’ll be using this lots!

For me personally it hits another sweet spot though, and that’s in spoonie friendly cookery. For those of us living chronic life, suffering from disability and severe fatigue, cooking is a massive energy drain and often impossible. With rheumatoid arthritis in my hands food prep itself is a challenge I could do without, even with years of experience as a chef.

As someone who’s spent years ‘cooking from scratch’ it’s been a big adjustment to buy pre-prepped food without losing control over what’s in it (see ready meals – useful but not every day!). So discovering Jack on Twitter a couple of years ago felt like fate was smiling. I now happily eat tinned potatoes, olives, mushrooms, lentils, chickpeas, fruit, along with frozen peppers, stir fry veg, and spinach. Often cheaper, nutritionally sound and so easy as it’s already peeled \chopped\sliced and often partially cooked, it’s helped me cut down on wastage and save pennies! I also make my own wholemeal seeded bread and pizza bases – with a stand mixer and a slow cooker bread is an effortless wonder.

Additionally as I’ve followed Jack’s books and picked up more of her vegetarian recipes I’m only eating meat a couple of times a week, good for the environment and my budget! Highly recommend this, a fabulous variety of breakfasts, breads, soups, meat and vegetarian main courses, plus desserts will not leave anyone wanting for variety.

I’d highly recommend buying a copy for your kitchen, & if you can afford to donate one to your local food bank too it will be very gratefully received, or you can donate the cost of a copy to Jack’s GoFundMe & she’ll get it delivered through the Trussell Trust.

Yes, This Hurts!

Posted on by SingleRheum

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

Defined by?

Posted on by SingleRheum

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 💙

Whispering Darkness…

Posted on by SingleRheum

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.

My Autumn Soup…

Posted on by SingleRheum

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 😊

RD Blog Week #1 – The Medicine

Posted on by SingleRheum

RD Blog Week #1 – The Medicine – Patients with autoimmune disease often are not treated well by Doctors & Pharmacists when we ask for or receive pain medication. What has been your experience?

This is a blog I drafted last Friday, whilst it may seem a smidge off topic I feel it accurately reflects the experience of so many of us with chronic pain.

I recently watched a half hour TV programme called ‘Britain on Painkillers – The Silent Epidemic”. I truly wish I hadn’t bothered. I should have realised from the title that this would not be a balanced & factual scientific look at pain medication, with input from all sides of the pain management arena, but instead an incredibly biased piece of presenting laughingly called journalism. Thanks ITV 1, this is exactly why I no longer watch you. I was literally pausing every few seconds to check I was hearing correctly, then stopping to make notes, the more I saw & heard the angrier I became. Hardly my usual Zen Friday evening!

*I’m trying very hard as I proofread this to remove any sarcasm, please forgive me if it can’t help slipping in.

Very early in the programme we were addressed by Dr Frances Cole, a Pain Rehabilitation Specialist who started by saying that whilst Opioids are effective for short-term pain, for chronic pain they are “pretty useless”. She went on to say “People & pain become a muddle of hopelessness, unhappiness, despair, loss of jobs, loss of income. Are Opioids really going to address that? No!” I’m guessing that she meant people IN pain, but same difference. I don’t disagree with her observation that people diagnosed with chronic conditions suffer emotionally, this simple fact is a known truth within the chronic pain community, both anecdotally & from scientific study. Receiving a chronic health diagnosis is life changing.

However…Her question at the end of that statement seems to deliberately obfuscate the point. We do not require or expect effective pain relief to fix our emotional responses, expedite our way through the grieving process or regain employment or mobility for us. We simply want to stop or at least dial down the hurting for some of the time. Not an unreasonable ask, surely?

The presenter then noted that an estimated 43% of British people are suffering with some form of chronic pain. No data or qualification was given so I’m unable confirm or deny this number, but it would seem logical to me that it would be inhumane for any medical professional to expect 43% of the population to just ‘live with it’.

The programme then segued into filmed conversation with a patient; I’ll just call her AB. The presenter stated AB was “plunged into dependency” on Opioids after damage to nerves in her back. Repeated shots of AB lifting blister packs of tablets from a plastic box were shown, interspersed with shots of her playing toddler to emphasise the ‘danger’. The medications she specifically mentioned were Tramadol & Codeine. She said “I have to keep it (the tablets) in the box locked up high because a lot of this is very dangerous, for most people it can be fatal…. I was given these drugs with no guidance or support on how to use them” It was also mentioned that once she’d started taking the meds she suffered with drowsiness, nausea & memory loss.

Where do I begin? I can indeed confirm that both Tramadol & Codeine if taken incorrectly can be fatal. So can paracetamol, arsenic (cherry stone anyone?), sugar, nutmeg and water. Earth is fatal if you are buried in it, in fact life itself could accurately be described as a fatal condition. Ridiculous and more importantly irrelevant nonsense. I think it was at this point my BP rose to nuclear.

To address her other points:

  • No-one in the UK can legally obtain Opioids without a prescription from their doctor. They are a controlled substance. A prescription, by its very nature prescribes (stipulates) how many pills you should take, and how often, as well as if you need to take them with food, or avoid alcohol or driving. If this isn’t enough ‘guidance’ for you, then the instructions are also printed on a label stuck to the box, and warnings about the dangers of not taking them as prescribed are on the patient information leaflet, along with common side effects and advice to report these to your doctor
  • Drowsiness is a common side effect of Opioids and is clearly advised on the prescription label, the box & the leaflet. However drowsiness, nausea and memory loss can also be caused by severe pain. Scientists know that pain interrupts the neural pathways that store information in our memory. This is why so many chronic conditions cause what is known as brain fog, it’s a common & frustrating issue. So whilst it is true that Opioids may have been behind these symptoms, it’s at best disingenuous not to mention another very likely cause

The programme did briefly attempt to explain the way Opioids work by both blocking the way we process the pain signal, and activating a release of Dopamine, saying that this causes a ‘feel good’ feeling, which we then want more and more of, and this is what causes addiction. I’ll leave my very simple response to this claim to real science, using the voice of Dr David Ley – “Dopamine serves many complex functions in the brain, and only kindergarten brain science describes it as an addictive drug.”

Dr Cole was wheeled out again, this time describing how long term Opioid use can cause horrid side effects such as becoming sickly, groggy, confused, drowsy & muddled. As at least two of these terms mean sleepy, and two mean confused one suspects hyperbole. She went on to say Opioids also cause depression, suicidal thoughts, that they affect the “mind through to the body”. Am I saying it’s not possible for them to do this? Absolutely not. But – speak to any chronic pain patient. In fact speak to anyone who has ever received a life changing diagnosis from a doctor. They will all tell you that it sometimes takes weeks, months or even years to grieve. We grieve for our healthy selves, our previous lifestyle, our loss of employment, our sense of identity, our activity levels, our mobility, and many other emotionally impactful changes.

You don’t need a medical degree to be aware that life-changes cause emotional distress, anxiety & depression. Now add in constant debilitating pain. Trust me, life initially feels very bleak. Depression causes among other things an urge to sleep, confusion & suicidal ideation. I’m not saying it’s either/or, but that both need to be factored into a patients mental state – if mind affects body then certainly the reverse is true, body affects mind. Have I said disingenuous already?

Moving on, a Pain Consultant stated that Opioids only work for 1:10 patients anyway. No idea what data was used to make this claim, but even if we accept this as factual I would offer the following comparison as food for thought. Less than 20% of people diagnosed with cancer types which are difficult to diagnose and/or treat survive their cancer for ten years or more (2010-11).  Recent CDC studies show that flu vaccination reduces the risk of flu illness by between 40% and 60% among the overall population. Both of these measures save lives. No-one is even suggesting that we stop offering treatment or vaccinations because they don’t work for everyone. Yet this is the view offered here. Does one have to be in a life threatening situation before medical professionals will allow us to play the odds? Ask almost any chronic pain patient if they’d like to try a pain relief medication that has a 10% chance of being effective & the answer will undoubtedly be yes please. (The latest data I can find {NIH,2017} suggests Opioids will be effective for 30-50% of Chronic pain patients).

The presenter then talked about an increased number who are addicted to Opioids, again no data was given. She stated that the biggest problem with long term Opioid use is addiction and that ¼ of a million people in Britain are currently struggling with Opioids. Even if one ignores the fact that “struggling with Opioids” is hardly a scientifically defined term, this number seemed very low to me. I’m no maths genius, but, if Great Britain has 65 million folks, and we calculate the % of the population that a ¼ of a million are, we find that according to the programmes own numbers in reality only 0.4% of our Opioid patients are ‘struggling’. I truly feel for those who become addicted to legal painkillers, but this is hardly what one would reasonably describe as an epidemic.

Unsurprisingly to anyone familiar with this topic about two thirds of the way through the tone of programme changed from vague to patronising. Almost anyone living with chronic pain will have experienced these pearls of wisdom many times, from not only medical professionals but their friends & family. Trust me, frustrating!

At this point viewers were treated to the opinions of a Dr Rebecca Hennessy. She was very keen we realise that she as a doctor had a ‘responsibility to say no’ when long term pain relief is requested. She started by saying that is easier for patients to take a pill rather than undergo long term courses of therapy. She followed this with “we have to help patients understand why no is in their best interests. The challenge comes when you’ve got someone who is overwhelmed…. they haven’t got much resilience to lose the weight, do the exercise, meditation, all the other things we look for”

At this point I was torn between saying ‘what the f*ck’ a lot, laughing hysterically or sobbing. The words I actually scribbled down were patronising garbage.

The same NIH study linked above also says “It is important to emphasize that the term “pain management” has not been clearly defined and sometimes is used erroneously to denote solely pharmacologic tools. Yet pain management may involve the use of a number of tools—both pharmacologic and nonpharmacologic—to relieve pain and improve function and quality of life. Before proceeding to a review of these various treatments, it should be noted that, while each may be used on its own, their integration in multimodal strategies that cut across medical disciplines and incorporate a full range of therapeutic options—including cognitive-behavioural, physical/rehabilitation, pharmacologic, and interventional therapies—has been shown to be most effective in the treatment of chronic pain”

It goes on to state that unsurprisingly US insurance companies are very reluctant to sign off on nonpharmacologic interventions. A simple equation that unfortunately also afflicts the NHS – money. Mental health care, CBT, massage, physiotherapy etc all cost far more than opioids. So essentially some parts of the medical profession want to remove medication without providing patients with the NIH recommended holistic approach to pain. Quelle Surprise.

Those who know me (& regular readers) will know that I am incredibly open minded when it comes to managing both my illness and my mental health. The two are inextricably linked. However – I also respect real science, and know that treatment for one should not be confused with treatment for the other.  I practice relaxation techniques, I meditate, I practice gratitude daily, and I’ve mostly come through my own grieving process. All of these things take time, and are often a steep learning curve. Do they help me cope with being in pain every single minute of every day? Yes, without doubt. Do they relieve my pain? Not in the bloody slightest, I’m mostly able to process it in a less invasive & emotional way, but it is still there, a constant unasked for traveling companion.

The only things that provide actual pain relief are Tramadol, Oxycodone and Marijuana. As one is illegal here obviously that’s only guesswork(!), but I can confidently assert that the Opioids always turn the pain down by 40-50%, and I always take them as prescribed by my doctor. I don’t even use them daily, not because I’m pain free but because I’ve built up quite a high level of pain tolerance and would rather keep the meds in reserve for when I’m in real discomfort. My choice.

The most frustrating thing for me was that throughout the programme was conflating methods for reducing pain with methods for coping with pain, as well as using the terms dependency and addiction interchangeably. They are all very different things and should be respected as such. I can only surmise that the intention was to deliberately confuse the average viewer.

I’ll finish what has turned into an opus with one of the last statements made by the presenter, which illustrates my last point beautifully. “The long term gain (of reducing Opiod use) will be fewer people trapped in the circle of dependency, a relief for them and their families.” Believe me no-one minds being dependent on a medication, they save lives. Millions of us are dependent, diabetics on insulin, on immunosuppressants, on inhalers, even cardiology patients on simple but life saving aspirin.  We need those medications to survive, to live, to thrive. This is the way in which the majority of chronic pain patients are dependent on Opioids. We are not addicts.

Butler Wanted…

Posted on by SingleRheum

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 🙏💙

Somewhere to Retreat…

Posted on by SingleRheum

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…

Posted on by SingleRheum

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. 💙