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 😊

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RD Blog Week #1 – The Medicine

RD Blog Week #1 – The MedicinePatients 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…

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…

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 😉

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

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

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

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

Update – 8th June

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

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

Why I Don’t Do ‘Stuff’….

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

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

However…

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

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

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

It always costs one way or another.

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

Mandala Metaphor…

We all know what Mandalas are, right? Those pretty round pictures that come in mindfulness coloring books? They have a number of interesting historical meanings, they are said to be a visual metaphor for the innate order and beauty of the universe, as well as metaphors for political, psychological and social statements. Buddhists, who patiently create them in coloured sand tend to use them as a metaphor for transformation and enlightenment.

It’s the transformation and enlightenment aspect that has grabbed me today, though not in that particular order. It’s fascinating to me that this little enlightenment has come through the form of the mandala, which has made me reflect on transformation. Sometimes the universe sends what we need 🕉️

Below is the link to a video that was shared today by the lovely Lene – please do follow her @TheSeatedView , you won’t regret it! It starts at 7m32s so you can see the exact segment we were viewing, which very beautifully shows hand exercises in the form of mandala shapes – clever and easy on the eye.

However… I watched, then went back, paused, watched again and all I could think was ‘are they really bending their hands that far?’. Yep, I can confirm they are, I’ve viewed it verrry closely. And what hit me was that they hadn’t searched the country for four models with “super-hand” abilities, this was how other people’s hands move. All the time, without them even thinking about it.

I tried. And my hands can’t do these movements, and trying hurt. I’ll be honest, I welled up for a moment. The enlightenment here is that I’ve simply failed to consciously notice over the past couple of years just how bad my hands have become. So in a way it was like a sudden… revelation. Almost a shock. Weird huh?!

I think a lot of that is down to the very gradual nature of the transformation (you knew I’d get there!). Had I gone to bed last night with my hands of three years ago, and woken up with my hands of today I’d have been screaming for doctors to fix me. Over three years I’ve slowly made adaptions, changed the way I do some things, stopped doing others, used tools to support etc.

A mish mash of coping methods that has added up to my odd ignorance of just how bad they’ve become. It’s mostly that the RA damage to my tendons and enthesitis have massively restricted my movement, leading over time to loss of hand agility and strength. So I wanted to review exactly what coping methods I use… And to share the extent of how much RA has changed a myriad of small daily tasks to raise awareness. They might even help you, bonus 🙂

  • Changing the bed – my cleaner does it, I can’t even put a quilt cover on or stretch on a fitted sheet
  • I have no grip strength – earlier I needed to open a flat plastic tray of bacon, I made the mistake of trying to grip the corner & pull the plastic film up – rookie error, that finger thumb grip kills me. Its like opening a yoghurt pot or a carton of milk, teeth or knives are needed
  • Kettle – I no longer can use one. I have a Breville One Cup, and when I fill it with water I have to use a plastic jug half filled and use both hands to hold it to pour
  • Tin opener – can only use electric one, the other was binned long ago
  • Jars etc – I have an amazing rubber square from my OT which will grip much better than I can, but occasionally I can’t even open with that & I give in or grab a neighbour
  • Cooking – am slowly giving it up, I last peeled & chopped veg a few weeks ago, then sat down & ordered some pre prepped food & some ready meals. Of course I also can’t move hot saucepans, another reason to keep it simple & safe
  • Cleaning – getting a small stubborn stain out of the carpet recently lost me the use of my wrist & elbow completely for three days – from now on my lovely cleaner’s job if needed
  • Sewing – not that I do loads, but machine only, small movements for hand sewing & even pinning hems really hurts
  • Reading – my biggest love but damn, holding a book is hard. Moving more & more over to my kindle app on my tablet
  • Dressing, washing, doing my hair… the only way I can can dry my hair is to drop my head down and use my knee to support my arm holding the hair dryer. It’s complicated 🙄😅
  • Writing by hand for longer than about three seconds… 🤣

I’m sure there are other people things that will occur the minute I publish this, but frankly I’d bore myself, you get the picture. Yeah, so my hands, pretty crap and mostly painful. So I definitely won’t be doing the Mandala hand workout anytime soon.

But that doesn’t mean I can’t appreciate the very clever beauty of it. Namaste 🙏💜

https://www.pscp.tv/w/bZo90nR3LTcxMzA5MjM2NHwxTW54bmVhZXp2akpPRqjkRT1-GsBc73pklr4lZ3TaiR4bYZj_G6gv3S73Mew=?t=7m32s

NYE 2017 – Reflections

I was trying to find a theme or quote that represented what 2017 has meant for me to use as a starting point, but nothing seemed quite the right thing. I know New Years Eve tends to bring us bloggers out of the woodwork, I think it’s the creative urge to somehow capture where we’ve been, and perhaps plot where we want to go. Combined with the creative muse that won’t let us know what the next sentence is until we write it.

My year has above all been a catalyst for change, and wending through it has been a series of lessons I hope I’ve learned from. I think I’m a better person than I was twelve months ago, and I hope in twelve months time I can say the same again and mean it as fully as I do now. There’s a lovely aboriginal proverb that says “”We are all visitors to this time, this place. We are just passing through. Our purpose here is to observe, to learn, to grow, to love… And then we return home.”

I have, with the support of some wonderful people, finally discovered the real Joy of Now. Not the superficial trimmings of mindfulness that is pushed by mainstream media, but the real living in the moment stuff. It’s mind altering. Life changing. And it’s so amazing! But I wouldn’t have been ready for this had it happened earlier in my life, I firmly believe that we have to become open and ready to welcome in the new and let go of the old, and do this with with self love and self compassion. Even when it’s as challenging as f*ck. Which it often is.

So how did I get here? I am forever grateful to Demi Schneider my wonderful therapist, who helped me become ready to open these doors almost two years ago now by teaching me how to love myself fully. To Ruby Wax whose fabulous book “A Mindfulness Guide for the Frazzled” gave my logical brain the understanding it needed of what was going on in my head and how to start rewiring those neural pathways. To the wonderful Calm app which helped me start meditating and sleeping again. To the beautiful Essia for leading me to The Now Project. And to Adrian from the Now Project who held my hand (literally & metaphorically) through one of the darkest hours of my life. And to the whole Now Project Team for just being here.

Does that give you a glimpse of how it all fits? How what seems random and disparate is beautifully interconnected. The Universe guides us to where we need to be even when we have no clue what we need. We can’t rush it, things will happen when they are supposed to. All we need do is live, right now.

For those that don’t know I was diagnosed with a serious lung condition in June, which at the time was believed to be terminal. It wasn’t a shock to me as I’d been expecting it for months, but even so it was definitely one of life’s “oh shit” moments. Thankfully I already had mindfulness and meditation in my life, without either I know I would have spiralled back into severe depression.

And here’s where synchronicity comes in. I attended my first retreat with the Now Project the day after I had this news. (See, I did have a point!) That evening during our informal meet and greet we were asked what we hoped to get from this weekend. As I listened to the others share a voice in my head (mine, of course) suddenly shouted “Nothing, I’m going to die, you can’t help me” In that moment everyone and everything else seemed trivial. Knowing I was about to either sob or scream I quietly left the room.

I went outside and sat under a beautiful willow, looking over the fields in front of the house. And I sobbed my heart out. Until gradually I realised I was watching the midges dance in the twilight. Above them Swifts circled and dove, catching their evening supper. And I found a measure of peace, my feet bare against the grass, grounded in nature.

Of course when someone came to see if I was okay I melted again. And Adrian, a complete stranger to me, sat with me for nearly an hour. Holding my hands. Bringing me back to my breath continually. And that is when I finally understood that we only ever have Now. None of us are guaranteed tomorrow. Nothing else is real. Catalyst.

I’m incredibly grateful to say that further testing has (at least for now) ruled out any significant impact on my life expectancy. I have Interstitial Lung Disease caused by RA, which in turn causes a lot of breathing issues, but they are manageable by moving slowly. I’ve also been formally diagnosed with ME this year, so fatigue impacts my pace too. And that helps me continue to live in the moment.

So in simple terms facing my own mortality brought me deep joy. I know I’m not the first or last to say this. And others will walk different paths. The one thing we’ll have in common is that realisation of just how essential it is to live Now. Not today or next week or next year – they don’t exist. When we combine that with real love for ourselves exactly as we are we become invincible. Even death holds no fear because it’s just another step towards enlightenment.

It’s quarter to midnight on New Years Eve 2017, the moon is bright and full. I have candles burning gently and the enchanting music of Deva Prema playing in the background. All is well right Now.

Wishing you all a blessed 2018.
Dee 💙

Excuse me, I’m Dormant…

I sort of feel I should start by apologising for being so quiet recently, especially with blogging, but the spoons have been really low for a couple of months. I feel the balance is tipping towards more ‘bad’ days than ‘good’. I dislike using those terms as they feel like I’m judging, I’ve hit the trusty thesaurus, how do dormant days and wakeful days sound?

The definition of dormant seems particularly apt – adjective: dormant (of an animal) having normal physical functions suspended or slowed down for a period of time; in or as if in a deep sleep

That accurately sums up about 40% of my time. Maybe more. At the moment I feel like I’ve hit a medical stalemate – another great word – any position or situation in which no action can be taken or progress made.

I saw my GP (who is fab) on Friday, we ran through a few symptoms where her answers were, not unreasonably, that there’s nothing that can be done. Of course if a,b, or c get worse let her know, if not do my best to continue to live around them. She has the option to refer me back into the hospital Fatigue Management team so to keep that in mind for the future.

FYI I’m not being ignored, I have ongoing support from Thoracic (lungs), Rheumatology (joints & lungs), and Orthopaedics (spinal surgery, sciatica) as well as my GP.

But none of these stop me doing this. Sleeping for 16, 18, 20 hours at a time. I track my sleep now because I’m not sure people believe me, but I’m genuinely out for the count, I don’t wake to pee, drink or eat, and a bomb could go off without me stirring. Usually after a sleep like this I wake but can barely move, it takes everything I have to stay upright just to make a coffee and maybe toast. It’s like the worst flu feeling quadrupled. I literally stagger to the kitchen and back, almost on my knees.

And every time within two hours I’m passing out again. I use passing out deliberately because that’s exactly what it feels like, it’s almost as if I can feel my body shutting down, to quote the Borg “resistance is futile”. I spend approx two to three days a week like this.

To be clear here I’ve been diagnosed with RA, Fibromyalgia, ME/CFS, and RA-ILD (Interstitial Lung Disease). All of which will be contributing to this dreadful fatigue, though my suspicion is this is much more ME than the others. I’ve attended pain management sessions and fatigue management sessions which mostly revolve around pacing and CBT. Unfortunately as anyone with ME knows the use of CBT as a tool to improve fatigue has been totally discredited. And pacing just doesn’t work.

Pacing is actually a very simple technique. One monitors one’s activity and fatigue levels for a few weeks on a chart, then you calculate an energy ‘baseline’. So let’s say the average day allows you three hours of low activity. You plan around this and you slowly work on building up. Sadly this model assumes a number of modes of behaviour are manageble for the patient – such as getting up at the same time every day, sleeping for the requisite number of hours per night, ceasing to nap during the day, and that after sleep one feels refreshed.

None of this applies in my case. When I mentioned to the fatigue team that I can spend two or three days a week sleeping (dormant) they told me this “wasn’t usual” for ME. I thank the stars for the Internet, there is a lively community online who very quickly taught me I’m not alone, and I’m definitely not an aberration. In fact I’m fortunate, there are people with ME who’ve not left their beds for years.

I can sleep four hours or twenty, I never wake feeling refreshed. I can’t choose to not nap when I can be awake and say, reading one minute and the next it’s six hours later. Yes, my internal nap monitor is screwed too, it’s never just twenty minutes! I can’t work to a normal “sleep pattern”, when I’m dormant I not only sleep through alarms, I’ve slept through my cleaner coming and going, and a few weeks ago just crashed on the sofa whilst a friend was building me a walk in closet, thankfully he understood as his mum has ME so he finished quietly and tiptoed away. Bless him.

But I think these examples clearly show this is not down to me giving in or not trying. I don’t see anywhere to go from here clinically. So my only realistic option is to continue to flex and enjoy my Awake around my Dormant.

Yes this makes planning difficult. There are hospital appointments I’ve had to reschedule, blood tests I’ve missed. More important to my sense of engagement with life is the birthdays, the weddings, the lunches and the family events I’ve missed. It’s been a long time since I’ve felt guilty for these, I know now I have to listen to my body, but it still saddens me to have to cancel.

Is this difficult to live with? Yes of course, saying otherwise would be disingenuous. I think anyone faced with the reality of losing maybe three or four days a week, every week, for the rest of their life would be floored. I think the blessing here for me is that this hasn’t been a sudden notification, it’s happened gradually over the past few years and whilst I’ve railed and wept I’ve also become accustomed to these limitations being my life.

It’s just that this conversation on Friday finally drove home that this is here to stay. There is no magic pill or potion, therapy or faith that will make this change. Stalemate.

And so comes acceptance. So I will continue to try to see my dormant days as necessary recharging, to allow my wakeful days to happen. I will continue to try every day to find both gratitude and joy in my world. I will continue to use my toolbox containing items as random as meditation and tramadol, heating pads, mindfulness and antidepressants. And I will continue to find my joy in the smallest and often unlikeliest of places. Eyes wide open.

Namaste 🕉️

Things I wish I’d known.. 

What do I wish I had known at diagnosis? This started out as a short response to a seemingly simple question and ended up here, I guess I always figure why use ten words when you can use hundreds!

1. That there is a fantastic, amazing and committed online support community. That these strangers would become my home, my family, my friends. There is an amazing bunch of people out there, living #chroniclife just as I do, and they are all passionate about providing support, information, safe places to chat and vent, and somewhere to go at 3am when the regular world is asleep.

2. That getting the diagnosis is not the end, it’s the beginning. Just after I very first joined a wise RA’er told me that this is a marathon, not a sprint. Three years later I get it.

3. To take all the RA stuff seriously, but learn to laugh at it at the same time. It’s very easy to get bogged down under it all, so spot the funny moments and treasure them, they do help! (Getting stuck in a hotel bath springs to mind!)

4. That everyone’s RA is different. There are similarities within recognised parameters, but you may suffer some things badly and others not at all. That doesn’t make you odd or weird, we all feel this differently
5. That #selfcare is the single most important thing you’ll learn to do. You can’t pour from an empty bucket, so look after you properly, then you can be there for others. Putting even family before yourself is a mistake, I always think of the airplane oxygen rule, you first, children next.

6. That it’s perfectly possible to have even severe RA and live your life with love and joy and hope. You’ll find your way, and there are others who are here to help, always.

7. That it’s OK to scream and rant and rave and be angry too. We all do it, venting is welcome! Letting off steam occasionally is I believe an essential part of processing and accepting your diagnosis

8. That no one can tell you how a medication will work for you. Not your rheumy, not your doctor and not us. Unfortunately RA treatment is trial and error – many people hit their magic med first or second time and probably never join online groups because they don’t need them. Others will have meds fail them over and over, or provoke allergic reactions. The only way to know what will work for you is to try it with your rheumys support and guidance.

9. That you will find your way through this. You’ll learn how your RA behaves, what helps and what doesn’t, when you need to rest and when you need to work through. It’s not a quick or easy process, but I promise you will get there 💙