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
Some of you may know I have Myalgic Encephalomyelitis, or ME/CFS. Many of you will have no idea of what that actually means beyond “being tired” which is so far from the truth. For too long the medical profession & the media have treated ME/CFS as a joke, a mental illness, or fakery. It is none of the above, and the mindset is insulting to every single one of us.
It affects waking & sleeping. It affects cognitive thinking and speech, memory, writing and listening. It causes seizures and myoclonic jerks. Clumsiness. Bowel problems. Joint pain. Muscle pain. Exercise intolerance and PEM (Post Exertional Malaise) which can last for weeks or months. Flu like symptoms. It affects every minute of waking life every single day.
In the face of ignorance and incompetence from those with whom she sought help, Jen did what many of us do. She went online and found a tribe. Somewhere where we are heard, seen and understood. Where we are validated.
She then went much further, eventually creating and filming Unrest. This is her story, but it’s also our story. Thankfully I’ve never been as severe as Jen, I pray I never am.
But I have periods of days when I am invisible, when no-one sees me. I don’t get dressed or leave the house. When I wake from an 18 hour sleep then have a three hour nap. When holding a conversation is impossible. When simply sitting up is just too hard, let alone leaving the bed or sofa. I am too often one of the #millionsmissing
Please watch #Unrest – it’s now on Netflix. The link to the trailer is below. Yes it’s hard viewing. But it will open your eyes to the reality of the lives of millions with ME.
I was trying to find a theme or quote that represented what 2017 has meant for me to use as a starting point, but nothing seemed quite the right thing. I know New Years Eve tends to bring us bloggers out of the woodwork, I think it’s the creative urge to somehow capture where we’ve been, and perhaps plot where we want to go. Combined with the creative muse that won’t let us know what the next sentence is until we write it.
My year has above all been a catalyst for change, and wending through it has been a series of lessons I hope I’ve learned from. I think I’m a better person than I was twelve months ago, and I hope in twelve months time I can say the same again and mean it as fully as I do now. There’s a lovely aboriginal proverb that says “”We are all visitors to this time, this place. We are just passing through. Our purpose here is to observe, to learn, to grow, to love… And then we return home.”
I have, with the support of some wonderful people, finally discovered the real Joy of Now. Not the superficial trimmings of mindfulness that is pushed by mainstream media, but the real living in the moment stuff. It’s mind altering. Life changing. And it’s so amazing! But I wouldn’t have been ready for this had it happened earlier in my life, I firmly believe that we have to become open and ready to welcome in the new and let go of the old, and do this with with self love and self compassion. Even when it’s as challenging as f*ck. Which it often is.
So how did I get here? I am forever grateful to Demi Schneider my wonderful therapist, who helped me become ready to open these doors almost two years ago now by teaching me how to love myself fully. To Ruby Wax whose fabulous book “A Mindfulness Guide for the Frazzled” gave my logical brain the understanding it needed of what was going on in my head and how to start rewiring those neural pathways. To the wonderful Calm app which helped me start meditating and sleeping again. To the beautiful Essia for leading me to The Now Project. And to Adrian from the Now Project who held my hand (literally & metaphorically) through one of the darkest hours of my life. And to the whole Now Project Team for just being here.
Does that give you a glimpse of how it all fits? How what seems random and disparate is beautifully interconnected. The Universe guides us to where we need to be even when we have no clue what we need. We can’t rush it, things will happen when they are supposed to. All we need do is live, right now.
For those that don’t know I was diagnosed with a serious lung condition in June, which at the time was believed to be terminal. It wasn’t a shock to me as I’d been expecting it for months, but even so it was definitely one of life’s “oh shit” moments. Thankfully I already had mindfulness and meditation in my life, without either I know I would have spiralled back into severe depression.
And here’s where synchronicity comes in. I attended my first retreat with the Now Project the day after I had this news. (See, I did have a point!) That evening during our informal meet and greet we were asked what we hoped to get from this weekend. As I listened to the others share a voice in my head (mine, of course) suddenly shouted “Nothing, I’m going to die, you can’t help me” In that moment everyone and everything else seemed trivial. Knowing I was about to either sob or scream I quietly left the room.
I went outside and sat under a beautiful willow, looking over the fields in front of the house. And I sobbed my heart out. Until gradually I realised I was watching the midges dance in the twilight. Above them Swifts circled and dove, catching their evening supper. And I found a measure of peace, my feet bare against the grass, grounded in nature.
Of course when someone came to see if I was okay I melted again. And Adrian, a complete stranger to me, sat with me for nearly an hour. Holding my hands. Bringing me back to my breath continually. And that is when I finally understood that we only ever have Now. None of us are guaranteed tomorrow. Nothing else is real. Catalyst.
I’m incredibly grateful to say that further testing has (at least for now) ruled out any significant impact on my life expectancy. I have Interstitial Lung Disease caused by RA, which in turn causes a lot of breathing issues, but they are manageable by moving slowly. I’ve also been formally diagnosed with ME this year, so fatigue impacts my pace too. And that helps me continue to live in the moment.
So in simple terms facing my own mortality brought me deep joy. I know I’m not the first or last to say this. And others will walk different paths. The one thing we’ll have in common is that realisation of just how essential it is to live Now. Not today or next week or next year – they don’t exist. When we combine that with real love for ourselves exactly as we are we become invincible. Even death holds no fear because it’s just another step towards enlightenment.
It’s quarter to midnight on New Years Eve 2017, the moon is bright and full. I have candles burning gently and the enchanting music of Deva Prema playing in the background. All is well right Now.
Wishing you all a blessed 2018.
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.
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!
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.
Having just started to come out of a bad incidence of PEM I realised it’s something I’ve not specifically posted about. Yet it’s been a huge part of my life for over three years. So I’m going to try to explain in personal terms just how incredibly debilitating it is. A little background is probably necessary.
According to the NIH* “Post-Exertional Malaise (PEM) is a cardinal symptom of the illnesses referred to as Myalgic Encephalomyelitis (ME), Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic fatigue syndrome (CFS).”
A cardinal symptom is one that must be experienced by the patient to confirm diagnosis of the condition, in this case ME. Although my official diagnosis of ME wasn’t confirmed until about eighteen months ago, my GP and I are both in agreement that this has been ongoing for me since the time of my original RA diagnosis.
So, what exactly is it? And how does it differ from the fatigue experienced by patients with RA or other autoimmune conditions?
The NIH* states that “Unlike generalized fatigue, PEM is much more profound and reduces daily functioning. This symptom is characterized by a delay in the recovery of muscle strength after exertion, so it can cause patients to be bedridden for multiple consecutive days.”
And this is exactly what I’ve just been through. More recent studies into PEM recognise that the earlier criteria of ‘exercise’ was misleading and led to confusion amongst patients affecting diagnosis, ‘exertion’ is now used to provide a clearer picture, and it’s recognised that this can be mental or physical exertion, and that the physical exertion has a much lower baseline than in the standard population, as patients with ME are rarely able to exercise.
So we know PEM is profound and reduces daily functioning. But what does that look like? And how does it feel in real patient terms?
The NIH* describes it as “a worsening of ME/CFS, ME and CFS symptoms including fatigue, headaches, muscle aches, cognitive deficits, insomnia, and swollen lymph nodes. It can occur after even the simplest everyday tasks, such as walking, showering, or having a conversation.”
Seriously? Showering? Having a conversation? Actually yes, and in my experience having conversations, chatting, talking, call it what you will is incredibly draining. That doesn’t mean it can’t be enjoyed, but it does mean I’ll often pay for it later.
I’ll try and describe as clearly as I can how I was affected this weekend. I came home Sunday evening from visiting my Dad, which involves more driving than I would usually do. I want to make it clear here that I’m not blaming you Dad!! ❤️ Going to Waitrose or even popping out for lunch can have exactly the same effect. That’s the point. It doesn’t take much. And it doesn’t have to be physical. Dealing with simple paperwork for a short time can do the same thing.
So, Sunday afternoon. The first sign for me is usually yawning. Before I had ME I never thought of yawning as being a physical thing, but this can drop me to my knees. It’s like my whole body yawns with me. A couple of friends in my regular social circle will spot this a mile off now, and they’ll simply say ‘time to go home’. Apparently I suddenly look exhausted. Always attractive!
I’d say that on average within twenty minutes of this yawning starting I’ll be asleep, there is no choice, no putting it off. It’s like my whole body is simply shutting down. My head stops thinking, my muscles go heavy, and I can barely walk.
I lay down on the sofa at about six pm on Sunday, and only came to properly at about 6am this morning. So that’s 36 hours of basically being unconscious. I know I woke twice when my alarms went off to take my meds, and I know there was a third alarm I ignored so I missed a dose. I know I briefly came to and made a coffee at about 7pm on Monday, and it took everything I had to get into the kitchen and back. The rest is a blur of weird dreams involving a pub fire, going swimming in Italy and a trip to a theatre. Strange but true.
So that’s 36 hours lost so far. When I woke at 6am this morning I knew the worst had passed, the almost coma like feeling had gone, and my mind is awake to some small extent. Enough to slowly write this at least. But I have zero energy, and little concentration. From experience it will take another 24 hours at least before I’m able to actually get up and shower. I won’t be able to read or follow a TV plot properly, and I will probably sleep a lot today, though hopefully more refreshing sleep, not the passed out exhausted-ness of the past two days. Although it’s not an experience I’ve had I imagine I probably feel about the same as a marathon runner the day after, when everything hurts and you can barely move!
This is not a rare occurrence, it happens about once a week. I can lose from one to three days. I do pace my activities quite carefully, plan down days around days I have to be up and out, whether for medical appointments or social. I live alone so I try to get out three times a week for a couple of hours each time, usually a couple of coffees or soft drinks with friends. It’s incredibly easy to become isolated with chronic illness and it’s so very important we don’t.
So today will be a ‘sofa day’, as it happens it’s very rainy and dark outside so a perfect day for a couple of daft movies and snoozing. Then, fingers metaphorically crossed, I’ll feel human again tomorrow 😊
Footnote – it’s curious but common in #chroniclife to feel the need to validate ones symptoms and experiences, especially with something like ME which is incredibly still dismissed by some doctors. In this instance I’m actually glad I was wearing my sleep tracker, which has recorded 23 hours of sleep for yesterday. Proof!
*I have referred to and quoted from the American NIH or National Institute of Health because I find their website carries clear and up to to date articles. The full text that I’ve quoted from can be found here.