Simply Christmas 

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 đź’™

Finding Balance 

​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 đź’™


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

#rablogweek 4 – The Pain of Pain Meds 

The pain of pain meds – Pain medication prescriptions are difficult to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members? Tell your story today.

I saw today’s prompt and it immediately reminded me of how lucky we are here in the UK. I’m sure many patients here are unaware of just how difficult it is for our fellow patients, in America particularly, to obtain pain meds, or even just their RA meds. 

I’ve never walked into a doctors appointment thinking how much is this going to cost me. I’ve never been refused pain medication. I’ve never had to choose between getting this month’s meds or buying food or petrol. I’ve never had to be drug tested before being prescribed the next months pain relief. Unfortunately all of these are everyday day realities for RA sufferers in the US. 

I’ve posted previously about pain meds, and no doubt will do again, it’s a topic that is unfortunately treated with disdain and judgment by many, including the more ignorant amongst our  journalists and politicians out there who happily call us addicts with no knowledge of the very real decisions we take daily about our pain relief. 

I often think the biggest misapprehension about pain meds is that they take away the pain.I wish! What they do is dial it down. Think of it as listening to music really loudly, then turning the volume from 10 all the way down to 2. It’s still there in the background, but at the lower level you can work around it, and get on with your day. 

Second annoying misapprehension? We’re all getting high. Cue loud ironic laughter from across the chronic pain community. I have never gotten high from a pain med, not even opioids which I use daily. I’ve been nauseous, and occasionally even vomited.  Not exactly tempting me to up the prescribed dose or take extra for a laugh. Yet that is my choice when my pain is really severe, I can take oxycodone and stop wanting to cut a limb off, knowing that instead I’ll feel severely nauseous for the next hour.

But – at least I can get my medication. My GP prescribes my pain meds without fuss.  I’m guessing this is because we have a good doc/patient relationship, we discuss regularly how I’m doing and she knows I don’t overmedicate or abuse my pain meds ergo I have no problem with getting them. 

I honestly don’t find using pain meds scary. Maybe because I see them simply as one of the tools in my RA toolbox, they sit there alongside heating pads, voltarol gel, my RA meds, compression gloves, wrist splints, crutches, meditation, aromatherapy etc. 

I also don’t buy into the addiction BS that the press tends to throw around. I don’t know the figures for the UK, but I do know in the US addiction rates among patients who are prescribed opioids is less than 4%. Opioids just aren’t the big scary med they are made out to be. I worry more about the potential effects on my liver. 

So, yes, I will continue to use my pain meds, and I will do so without any shame. I will also continue to try and educate anyone who chooses to judge me, or anyone else,  for making an informed and rational decision about how I manage my pain. Walk a mile in my shoes….. 

Patients, not criminals 

​Interesting and thought provoking article from Piers Morgan on the current opiate situation in the USA. However I’m in two minds here. The illegal sales and addiction and over prescribing absolutely have to be dealt with effectively. 

However….by taking a play to the popular media stance the US government has sadly started treating genuine chronic pain sufferers like criminals. I speak regularly with a large number of people in the US, mainly with RA, but also other chronic pain conditions. There is no cure. There is no way out. 

The US media has in my opinion completely misunderstood and misrepresented the difference between dependence and addiction, just calling all opioid users addicts. 

I rely (am dependent upon) two opioids to allow me to achieve some level of comfort daily. Tramadol for regular daily use and oxycodone for breakthrough pain (when tramadol is not enough).  I am in no way addicted to either of these drugs – to be honest I don’t see the attraction. Tramadol just dulls my pain with no other effect at all, and if I on rare occasions need more than two doses of oxycodone a day (well under what my prescription allows) I feel very nauseous and slightly dizzy, neither of which are a pleasurable experience. I literally have to make the choice between turning down the pain and feeling sick or putting up with the pain and wanting to scream. Hobsons choice. 
Maybe I’m doing it wrong(!), maybe I don’t have an addictive personality, maybe my body metabolises drugs more efficiently, but I certainly have never gotten high (before oxycodone I used morphine but the nausea turned to violent sickness after one dose which is not amusing). 

Am I dependent on these drugs? Absolutely.  I have multiple joint damage, cervical and lumbar spine problems all from RA. Should I have to sit here in agony because some idiot wants to get high using the same substance? Absolutely not. Leaving patients in pain when there is an effective drug available is inhumane. 

Yet that’s exactly what’s happening to my friends in the US. I’m talking about doctors and consultants refusing to prescribe pain relief. Patients being sent to specialist pain clinics. Middle aged housewives being asked to take urine tests every four weeks before they can get their next prescription. Disabled patients having to travel distances in discomfort just to get to the nearest person who will prescribe them pain relief. 

Yes, the massive over use of opiates needs addressing, but there must be some way to not make patients feel like criminals just for wanting some relief.

As usual thoughts are completely my own and do not proffer medical advice. 

Facet Joint Injections – the Low Down! 

Am currently laying on a hospital trolley post procedure, so I thought I may as well lay this out here for anyone else who is facing the option, or just likes my ramblings 🙂 

My back pain is literally disabling. It’s because of my back pain that I can’t walk, and either use crutches over short distances or my scooter for longer. The last time I tried walking without my crutches was over a year ago, and I was in tears of agony after a very short time. The pain starts in my outer left hip, then sets fire to my lumbar spine which is where the actual mechanical damage is. Using crutches keeps weight off my left leg, so stops this process. However I’m constantly in pain in my back, standing hurts, sitting hurts, etc.  That’s not even a moan, I am so used to this now it just is. 

So the damage. My L5/S1 disc is prolapsed (herniated),  the two discs below that are completely dehydrated. This is known as Degenerative Disc Disease, DDD essentially means my lower lumbar spine is bone on bone. And that’s the bit that hurts! 

So today as a day patient I have just received two sets of facet joint injections.  In simple terms the facet joints join the vertebrae together, they contain synovial fluid, and they become inflamed,  just as any other joint can  with RA.  Is this caused by RA? Opinions do vary. However the disc degeneration is known to not only be more common in RA patients, but to progress more quickly.  And I don’t believe in coincidences, my back pain started about two months after my first RA symptoms. It would seem strange to me if the two weren’t linked, and my orthopaedic consultant said YES. Good enough for me. 

Once the local had been injected (small ouch) the consultant worked closely with a radiographer who was taking almost continuous xrays so she could direct the four separate injections in obliquely to exactly the right spots of my spine. I could see the xrays on the screen beside me which I  found fascinating, but I’d recommend turning  away if you’re squeamish!

Did it hurt? Yes. Each time the needle got near the affected joints. I kicked the table I was laying on at one point, but I  managed to stay still and not swear out loud, which I’m calling a major win!

Half an hour on a bed then discharge. They advise having someone drive you and stay with you in case of adverse effects. I know different people react differently to medication.  Having had this done today I’d happily drive myself there and back if there’s a next time. 

As it was my amazing Dad drove up from Wiltshire to take me, bless him! Thanks Dad 🙂 

Prognosis? Apparently it can take up to  two weeks to know if this has worked. The options are – it gets better, nothing changes, it gets worse. No guarantees in any direction.  I’m keeping in mind that I’m generally steroid resistant, but as this is applied directly to the problem as it were it may be very different. I hope so. So why go ahead with no guarantee of an outcome? 

Lots of reasons. Mainly boiling down to life’s too short. If there’s a chance of long term pain relief I’ll take it please. 

If you’re looking for further reading Spine Health is a site I have found really clear and helpful (no affiliation). 

Edit – as I check this for the usual typos before publishing it’s about four hours post procedure, and I’m just about to pop some tramadol. Just the usual pain level at this time. 

*As always these are simply my personal experience and opinions and should never be taken as medical advice.