Excuse me, I’m Dormant…

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 🕉️

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Healing begins with Love 💙

I’ve been pondering for a few weeks where to start with this blog post.  I know what I want to say, I’m just hopeful it comes across as I mean it to!

In March this year, following 18 months of chronic illness with RD, Fibromyalgia & degenerative disc disease all playing together, plus the recent death of my Mother I kind of reached a tipping point.  I’m deliberately not using the word breaking! But I’d had month after month of pain, depression, anxiety, aching, medications,  fatigue, painsomnia and nothing was really changing – I wasn’t feeling ‘better’.

It was a sink or swim moment.  I could either drift along as I was, feeling pretty miserable most days, or I could look for help.  But what? Who? Where? So I hit trusty Google and followed where it led.  And boy was the universe ready for me to reach out! I started looking at mindfulness retreats, found lots of very out there options which included raw foods and tents, which aren’t necessarily my scene!  But whilst stumbling from link to link I came across the wonderful lady who was to change my life.  There is no other way to put that, and I truly believe we were drawn together.

Demi Schneider is simply one of life’s good ‘uns, and an insightful, generous and empowering lady.  A Clinical Hypnotherapist & Psychotherapist, Metaphysical Life Coach & Author of “Beat Your Depression For Good” – she powerfully challenges and guides us to look within for our own joy. To care for and love ourselves.  To be happy!

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In simple terms what we think is all powerful. And it’s our choice! And that choice dictates how we feel, emotionally and physically.

It’s easy, rational and possible, but it takes learning, acceptance, meditation and work.  We have years of learned negative thinking patterns to turn around before we are able to allow ourselves to truly be open and actively listen to what our body is telling us. 

It’s known that the subconscious mind can’t tell the difference between imagination and reality.  So by changing our thought patterns to positive (for example repeating ‘I am calm and in control’ when feeling anxious), we physically change the chemicals our brain releases – increasing serotonin.  And when you feel better, you feel less pain. 

Does it relieve pain? A little, yes, and I’m in my early days.  Is it worth it? Absolutely, allowing peace and acceptance into our lives brings joy and happiness to our minds and our hearts, regardless of circumstances.  Loving ourselves rocks!

It’s not a magic cure, but it is a much nicer way to live, especially with chronic illness when things can seem very bleak.

Namaste 💙