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.

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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. 💙

Dear Newly Diagnosed…

Posted on by SingleRheum

You obviously feel in need of support.
I do remember that feeling – that you are really struggling with the whole idea of having RA – of becoming chronically ill.

So you’ve joined a support group, seen a few posts about surgeries and disability and people trying their third biologic, now you’ve gone from slightly concerned to terrified!

It’s important I think that newbies to #chroniclife are made aware that it tends to be those with more severe symptoms who gravitate towards support groups or twitter, and stick around. It’s important we acknowledge that around 40-60% of those diagnosed with RA and treated early will likely achieve controlled remission with medication. That’s actually pretty good odds. And those people often never feel the need to look for support groups online or to stay around if they do.

So our tribe tends to be those who’ve been a bit battered, often suffering with mental as well as physical issues that ergo cause emotional as well as physical pain. It means sometimes posts and tweets can seem dark or bleak, but it also means we have a fabulous empathy with each other and are able to give outpourings of love and support and prayers whenever they are needed – we’ve been there, and many of us have come out stronger for it.

And that’s a really important thing to know – we do come out the other side. My first year with RA was dreadful, I lost my job, I was made homeless. My depression spiralled. It was a dark time, perhaps not dissimilar to where you may find yourself now, and without my online tribe (not forgetting my wonderful IRL family & friends!) I’d have collapsed. These fabulous, generous strangers kept me putting one foot in front of the other when I couldn’t see the way forward. They held up a light.

It was hard and it was sad and it was painful, I won’t pretend otherwise. Antidepressants helped, my GP helped, psychotherapy helped, group therapy helped, and very gradually my feet found new, firmer ground. On balance now I can honestly say chronic illness has brought more good into my life than bad.

The worst happened and the sun still rose and set. That’s life changing right there. Survival. Some great therapy led me to mindfulness which lead me to meditation and gratitude. Despite being ridiculously ill and in constant pain I am genuinely happier with myself than I’ve ever been in my life.

RA was the brute force needed to make me stop & smell the coffee. I know it touched me for a reason. I live more spiritually and much more slowly, I treasure my friendships, I’m more sympathetic, more patient & more kind. I’m grateful for the smallest things, a warm bed, hot coffee, a good book. I’m no longer impressed by the material, but hearing a bird sing or watching the clouds move can and frequently does fill me with with joy. My path has been irreconcilably altered by RA and I’m the better for it.

Yes I still have dark days. I’m very ill, with RA, ME, Fibro & other conditions. So I have constant pain and take a lot of meds. I’m still on antidepressants and fully expect to be for life, they boost chemicals I need to be me and I’m more than fine with that. But my darker days are just that now – days. In the past they would have been weeks or months, my coping strategies developed and yours will too.

I wanted to share this with you not because you’ll do the same or feel the same – we all walk our own path through this life. But to hopefully reassure you a little that you absolutely will find your way. Chronic illness is not an end but a shift to a new beginning, an altered life does not have to be a lesser one.

My newcomer tips?

  • Get enough rest.
  • Listen to your body, if it hurts, stop.
  • Build your pain toolkit – meds, gels, ice, heat, tens, marijuana, movies, whatever works for you.
  • Let go of worry about what others may think – it really doesn’t matter.
  • Look after you – baths, chocolate, candles, pamper yourself.
  • And always, always remember to be as kind to yourself as you would to others – we are way too hard on ourselves.
  • Practice #selfcare daily

Sending blessings, Namaste 🙏🕉️💙

Behind The Illness is Me…

Posted on by SingleRheum

Thanks to Emma, who is part of my twitter tribe and a fellow person with ME for tagging me in #behindtheillness – it’s a lovely reminder that all of us living #chroniclife are also very human! You can find her great blog at NotJustTired

So you can find below some interesting & totally not useful facts about me 😊

Four places I’ve lived:

1. Stroud, Gloucestershire (my actual & spiritual home).

2. Eastbourne, West Sussex

3. Clifford’s Mesne, Gloucestershire
4. Constantine Bay, Cornwall

Four places I’ve worked:

1. The Swan Inn – chef & barmaid extroidinnaire!
2. Stroud College – Lecturer in Floristry
3. JHP Training – teaching then management across the South West
4. Athena, Bournemouth – book retailer

Four favourite hobbies:

1. Reading
2. Knitting (very much a learner)
3. Writing – my blog, poetry & occasionally stories
4. Meditation

Four things I like to watch:

1. Criminal Minds

2. Game of Thrones
3. The Walking Dead
4. Movies, especially good thrillers

Four things I like to read:

1. Fantasy – swords & sorcery – Feist, Eddings, Hobbe, Douglass
2. Spiritual – Thich Naht Hanh, Ruby Wax, Russell Brand, John Kabat-Zinn
3. Thrillers – Koontz especially
4. Poetry – most recent discovery is the C14th Persian poet Hafiz – sheer beauty through words

Four places I have been:

1. Guardalavaca, Cuba
2. Marrakesh, Morocco
3. Vienna, Austria
4. Ghent, Belgium

Four things I love to eat:

1. Chocolate
2. Steak & roasted vegetables
3. Indian food
4. Lamb Tagine

Four favourite things to drink:

1. Coffee especially cappuccino!
2. Green Tea
3. Havana Club aged rum (very occasional treat)
4. Mango & Passionfruit Juice with soda and ice

Four places I want to visit:

1. Budapest
2. Iraq, Iran & Syria (ancient Persia, pictured below)
3. St Petersburg
4. Canadian Rockies

Four bloggers I’d like to tag:

1. The very lovely Wren at RheumablogWren
2. The wonderful disability advocate Shona at ShonaLouise
3. The fabulous & focused Sally at SallyJustME
4. The boldy tweeting and often amusing Elise at TheFragileBones

There are lots of other bloggers I’d love to tag, I’m just hoping I’m not duplicating the tag with my choices!

I initially thought this would be a quick five minutes, then started thinking, reminiscing….. It’s been good fun.

Namaste 💙

Excuse me, I’m Dormant…

Posted on by SingleRheum

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 🕉️

RA & Lung Disease, or my struggle for breath

Posted on by SingleRheum

Firstly my apologies for sneaking in a wildcard at the end of RA Blog Week, but I’ve been suffering badly with fatigue which is unfortunately not conducive to blogging!

It’s been a long year already, and it’s left me a little tired. Let me take you back almost 12 months….

October 1st last year I started coughing. An irritating dry cough that was constantly annoying. By the beginning of December my GP ordered a chest xray ‘just to cover all bases’ and prescribed a steroid inhaler to help with the cough, which we thought might be Bronchitis.

Around Xmas I started getting breathless on exertion, and over the next few weeks this got worse. My xray came back showing ‘some scarring’. I’ll cut a long story a little shorter here but over the next few months I had a number of attempts at spirometry tests which failed as I coughed too much, though they did indicate a restrictive breathing pattern. At this point I was referred into the hospital, and after more detailed HRCT scans, Fleuroscopy, a bout of pneumonia and extensive lung function tests it became apparent that the RA has attacked my lungs.

In the last meeting with my thoracic consultant I got to see the scans, including a short “video” of my lungs breathing. It’s fascinating to see, you know me and wanting the fine detail! What it’s also shown is that on top of the lung damage – which is very likely from the RA – my right hemidiagphram is significantly elevated, though still thankfully working. The diaphragm is essentially the muscle that moves your lungs when your brain says breathe.

I’m saying it looks like RA damage because the jury is still out, there’s still a small chance it could be pulmonary fibrosis and not interstitial lung disease – further tests will keep an eye on progression of the lung damage and help identify the cause.

But essentially parts of my lungs have become inflamed, and then hardened, reducing my lung capacity and making it harder to breathe. On top of that the raised hemidiagphram is squashing the bottom of my right lung which just increases the breathlessness. We don’t know why that’s elevated so investigation is needed there too.

There is no fix, no cure. Lung tissue can’t be repaired. At the moment my consultant doesn’t feel this will significantly shorten my life, but we all know life don’t come with guarantees. I’m not being negative here, just sharing the facts as they’ve been put to me.

Unfortunately whether I live another four years or forty, I will have to live with this constant breathlessness. It was particularly difficult the first few days here in Cyprus as my lungs struggled with the hot air, making breathing incredibly hard even on mild exertion. This has now eased somewhat, hopefully in part due to the new inhaler I’m on.

But daily life has become that much harder. What makes me breathless? Making a coffee. Having a shower. Getting dressed. Turning over in bed. Walking short distances on crutches. Cooking. Basically everything. I’m also increasingly tired, probably due to low oxygen saturation levels which are being monitored, but on top of ME/CFS this has been a big drain on my already limited energy. I’m slowly learning to take pacing activity to the nth degree, quite literally tiny baby steps.

There have been moments when this has been very scary, but I’ve come to realise it’s almost like starting over again with a new chronic illness. Except this time I’m better prepared. I don’t need to slog through the ups and downs of adjusting mentally because I’ve been there. I’m certainly not willing to allow – or even in a place where – this can knock me down.

So, both mentally and physically I take those baby steps forward. I still meditate regularly, practice mindfulness and gratitude daily and these help keep me sane (ish!). In all seriousness without these I’d have been floored by yet another chronic health issue, but living in the now definitely reduces stress reactions. I’ve had my moments believe me, but they’ve been mostly manageable.

I think it’s important to remember that as with my first diagnosis of RA, this isn’t an end but the start of a new, slightly tougher path. And with the support of some amazing friends and family I can learn to live with this too.

Please remember as always nothing on my page is intended as medical advice and any errors are my own!

Showing Phil Mickelson where to shove his Nine Iron and other neat tricks. 

Posted on by SingleRheum

My beautiful RA friend Billie has started blogging. Her honest, pull no punches approach is speckled with humour. Please read 😊

RA in the Raw

You’ve all seen it. TheEnbrel commercial. You know the one, where Phil trots merrily over miles of manicured golf course without a care in the world thanks to Enbrel all but curing him of his Psoriatic Arthritis! Take it from me; one wrong step over something as minor as an anthill is going to have you wanting to wrap that nine iron around ‘ol Phil’s head quicker than Tiger’s wife when she busted out his window to ‘save him’ that Thanksgiving day.

On one hand, seeing a celebrity come forward with a like-minded affliction fills us sufferers with hope. Maybe nowsomeone in the funding department will take notice of what we go through. Maybe nowreal money will go into research! But, more than likely what will happen nowis our peers will look at us and say (or think) ‘If Phil Mickelson can do it, why can’t…

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RA – My Story… 

Posted on by SingleRheum

​Talk Health, the patient voice online asked for responses to a questionnaire recently, which I duly sent in. As today is Rheumatoid Awareness Day I figured it was a good time to share my story here too.  

1. Personal details – I’m keeping those ☺️
2. Tell us about you and your condition? I’m 47, happily single and two years ago I was diagnosed with Rheumatoid Disease. Three months later I had to sign off sick from work due to daily pain and fatigue, and although I’d love to return to employment at present I consider myself medically retired. Shortly after diagnosis I started sharing my story through my blog, Singlerheum,  and have been delighted to have had over 9000 views. The online spoonie community is an amazing support network that I’m proud to be a part of. I’ve since been diagnosed with Fibromyalgia, ME/CFS, DDD and Sjorgens, all  of which are commonly linked with RD. 

3. What treatment or therapy do you use? I’m on biologic medication for my RD, plus a number of other medications daily including anti depressants, pain relief, and meds for hypertension, Factor V Leiden and IBS.

Alongside these I have found more holistic practices helpful including conscious breathing, meditation and chanting as well as an electric under blanket, heating pads,  voltarol gel and compression gloves. 

4. What impact has it made on your life?  This could be a book! In more or less the right chronological order I’ve had to face up to daily

  • constant pain
  • fatigue that knocks you off your feet
  • losing my job
  • losing my house 
  • being officially homeless for three months
  • having major anxiety attacks
  • worsening of my depression. 

Becoming physically disabled, needing crutches to walk and a mobility scooter,  a raised toilet seat, a shower chair, a bed  rail,  a raised sofa and grab rails outside my front door.  

Not being able to wash or dress myself some days, sleeping binges of up to 18 hours and conversely insomnia. Loss of an evening social life, it’s normally pyjamas by 6pm. Loss of a friend who felt I was ‘sick & needy’.  Missing friends weddings and cancelling my own birthday due to fatigue and RD flares. 

5. Is adherence (sticking to your treatment regime) a challenge? Not at all, it’s a pain, but a manageable one most days. Alarm for morning tablets,  eye drops and mouth spray. Fybogel powder drink an hour later.  Alarm for evening tablets,  night eye gel, Lax powder drink.  Alarm every two weeks for biologic injection.  

Then self managing pain meds as needed,  using Paracetamol, Tramadol, and Hydrocodone for breakthrough pain. It would be a real struggle to  manage around working or a family, but living alone means my life can be very simple, it’s become a necessity. 

6. What side effects (if any) do you have to manage? Headaches, dry skin, dry eyes and mouth,  bowel pain and issues, GERD. 

7. Are you getting enough information about the meds that you take? Yes, but mainly because I self educate. 

8. Are you looking for an improved treatment? I’m looking for a cure!  But in the meantime an effective treatment would be great, I’m on my fifth RD med with no experienced improvement so far. 

9. Do you think that the pharma industry listens to you? Honestly? I don’t think they care. I’d love to be proved wrong. Simple lack of thought given to containers and packaging alone causes millions of patients hardship just to open their meds. Certainly as both an active patient and Advocate with RD I’ve never been asked a question by the pharma industry. 

However I have recently signed up for a new med packaging trial this year, so we’ll see! 

10. How would you like to see communication with drug manufacturers improved? I don’t think there is any. Certainly here in the UK you are prescribed a med and you take it. You have no say in brand, manufacturer, packaging etc. 

I would love to see more patient friendly packaging and plain English information  leaflets. I’d love to see customer service advice lines on packaging. I’d love to see drug manufacturers with patient friendly Facebook pages to encourage open and unsolicited communication. 

11. Do you remain hopeful? Yes. Despite worsening mobility and physical health, and thanks in no small part to a fabulous GP and some great private therapy I’m working on gratitude for the good in my life and achieving peace. Acceptance of my multiple diagnosis’ has certainly gone a long way towards that. So yes, I am in pain daily, fatigued daily, limited  to what I can do by how I feel daily, but I have the support and love of friends and family as well as the online RD community and that keeps me moving forwards each day!