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

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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 🙏💙

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. 💙

Why I Don’t Do ‘Stuff’….

Posted on by SingleRheum

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 😊

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 🕉️

Acceptance is….

Posted on by SingleRheum

I was asked a question recently by a newly diagnosed young lady in her early twenties. She wanted to know how to find a way of living with RA – she was already in a lot of pain and her RA was quite severe which had her worried about her future. I was really touched that she felt able to ask me, and I was pondering what to say when it hit me – how blessed was I that RA didn’t raise its head until I was in my forties! I can’t even imagine how horrid it would have been to have found myself in these shoes at a younger age, when you’re still finding out who you are, what you think and where you want to be (Not saying I have those down now, but I worry about them much less!).

My initial thoughts were around Acceptance, as it’s been the key for me in finding a way to live alongside my illness. But how do you explain that to someone young and newly diagnosed? Someone who is upset, scared, angry and confused. “Just accept it, you’ll be fine” is not going to cut the mustard. So this is a much longer (and more edited) version of my reply to her, which I really hope might help not just the young and newly diagnosed but the older (!) ones amongst us finding chronic life the emotional as well as physical rollercoaster it often is. So, Acceptance.

Where to start? Meaning? Let’s give this some context. Chambers English says to accept in this sense is to tolerate, to take on board. Not exactly cheering words. I know people often see acceptance as giving in or giving up, and it’s certainly not that for me. Acceptance doesn’t mean stopping researching treatment options, chasing doctors or not eating healthily. Let me digress for a moment – often in chronic life Elisabeth Kubler-Ross’ seven stages of grief are referred to. Originally published in her book ‘On Death and Dying’ it was soon realised that it’s a really useful tool for understanding grief in any form, including grief for what and who we were after significant life changes. Diagnosis with a chronic condition certainly fits into that category. It helps us validate what we’re feeling as well as letting us know we’re not crazy, and we’re not alone.

The stages are usually described as Shock or Disbelief, Denial, Anger, Bargaining, Guilt, Depression and Acceptance. You can see a good explanation of those stages here, but I will just note that these are not linear, it’s common to jump back and forth between all of them, we process these in our own time. So whilst Acceptance is listed last, it doesn’t mean you have to cycle through the others first, although in all honesty it’s likely you will. It’s perfectly possible to go from depression to anger to bargaining and back to anger again, and it’s likely you’ll do it more than once. And that’s absolutely fine; there is no “right way” to grieve. Be kind to yourself, this is a lot to deal with.

It’s often a long road and I certainly didn’t get here overnight. Believe me I’ve ranted, railed, been depressed, had severe anxiety attacks, not wanted to go on, screamed why me – the whole box of tricks. I’m sure this shows in my earlier blogs! Acceptance is a tough thing to do with a chronic illness, but it’s such an important step, as it can bring us to a place of peace with our illness. Anger in particular is very wearing to carry daily, and hurts us emotionally.

You’ll need to find your own path to peace, no-one can do it for you. For me it’s been psychotherapy, leading to meditation and spirituality, alongside antidepressants and some great support from friends. For others it’s religion, counselling, psychology, support groups, medication, and sometimes just having a good scream! All of these are great tools. But I promise you too can make your peace with this.

Acceptance – to tolerate? So, eventually I’m back on track! Toleration suggests a kind of grudging version of putting up with, like your illness is an albatross around your neck. For me it’s much more profound and much simpler. Acceptance means non judgement. It means I stop attaching emotions to my illness. I accept it just is. Like a table or a chair, it exists, but I don’t have to feel anything about it. It’s not evil or bad or personal, and it’s not something I need to fight with or be angry at. Who has the energy for that?! Using mindfulness has made me much more aware of what I’m thinking, and if I find my thoughts are drifting towards anger or guilt I just return to my breath, and I remind myself they’re simply not helpful.

Acceptance takes work, it takes practice. It’s not easy, it means changing the way we think. Of course chronic illness has had a massive impact on my life, there are many things I’ve lost, so it’s important we choose where we focus. I’m fortunate; there are also so many things I’ve gained, including a fabulous support community across social media. I choose daily to focus on the good.

We all know things will change, chronic life throws us new symptoms and challenges frequently and I’ve found that if I try to accept and roll with these rather than fight them my life becomes calmer. Does it work every hour of every day? Nope, I still have anxiety triggers and a recent new diagnosis had me reeling for a few days. But previously that would have sent me down the rabbit hole for weeks if not months, so I call that a win.

Life is precious and there are no guarantees for anyone, so certainly for me the best thing to do is enjoy every moment. Really enjoy it. Even on the worst of days we have choices about what we focus on and how we think. So on my less easy days I’m really grateful that friends drop shopping off and I have a warm bed. On better days just sitting outside and feeling the sun on my face or the breeze on my skin reminds me I’m alive, and I make a conscious choice to be happy.

Simply Christmas 

Posted on by SingleRheum

I just wanted to let every one of you, my lovely readers, know that I am thinking of you this morning. I’m here in Cyprus with my brother and his family, we’ve opened presents by the tree, Christmas music is playing and I’ve had a long phone chat with Dad so all is right in my world today.. Except.. 

Of course RA is here, muscling in on the festive season – we shouldn’t expect differently I guess, though one can always hope! So yes, meds with breakfast as usual, and because I’ve had a couple of fairly active days with the kids every joint is grumbling along with my spine which is just slightly on fire. A lot. 

But today I choose to be happy. I adore spending time with family, making new memories and remembering old is so important. So my wish for you is that you can do the same today. Forget stressing about Xmas, I’ll let you into a secret – if it’s not perfect no one cares! 

Spend time with those you love, whether that’s in person or on the phone. Relax, enjoy and yes, eat too much of your favourite foods! Use that heating pad or tens machine,  have a glass of something lovely, put your feet up and please remember #selfcare, none of us want to be flaring badly tomorrow 💙

Finding Balance 

Posted on by SingleRheum

Yesterday I cried and wept, illness taking friends is so bleak

Today I (chair) danced and sang with friends who filled the room with life
Yesterday was for death and dying
Today was for love and joy

Balance is so important. Anyone with a chronic illness sees too much darkness. We lose time, we lose careers, and sadly sometimes we lose friends.

There are those who might say that if we’re singing and laughing then we can’t be that ill, or we exaggerate the pain. There are those who would say if we can do this today we should be able to do it again tomorrow.

They will never understand the joy of grabbing a few hours in the sun when the rest of our time is darkness. And I hope they never do. It’s absolutely necessary for our mental health as well as physical that now and again we simply say FURA!!

Spending time with people we love whose company delights us, and recharging our joy in living is probably the most important thing we can do for ourselves. No, it’s not easy. Yes, we’ll pay for it afterwards, often very painfully. But when you spend many days alone and hurting so bad you don’t actually want to even speak to anyone, dipping our toes for a time into positive, loving energy is truly restoring.

It’s very easy, especially on days like yesterday to focus on the dark, when someone passes so young and has the same condition you do you are frighteningly aware of your own mortality. It was coincidence that lead to this ‘sad day, happy day’ weekend, today being birthday drinks with lovely people, but it made me feel blessed.

So I believe that loss, as awful as it is, also acts as a reminder that we are still alive. And that’s so incredibly important. See that movie, kiss that boy, hug your children, visit your family, phone your friends, tell them you love them. Not in morbid fear, but in sheer joy that we live another day. Think of those we’ve lost, and rejoice that they were in our lives, celebrate how very fortunate we were to know them.

I’ve always loved this poem, it reminds me of those that have gone on, and how very wonderful it was that I had them in my life, however briefly. Namaste 💙

She is gone

You can shed tears that she is gone
or you can smile because she has lived.

You can close your eyes and pray that she’ll come back
or you can open your eyes and see all she’s left.

Your heart can be empty because you can’t see her
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday.

You can remember her and only that she’s gone
or you can cherish her memory and let it live on.

You can cry and close your mind,
be empty and turn your back
or you can do what she’d want:
smile, open your eyes, love and go on.

David Harkins, © 1981