2. Eastbourne, West Sussex
2. Game of Thrones
3. The Walking Dead
4. Movies, especially good thrillers
2. Eastbourne, West Sussex
2. Game of Thrones
3. The Walking Dead
4. Movies, especially good thrillers
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.
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.
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 💙
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
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…..
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.
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.