Self care for the parts of myself that can’t look after themselves.  

People try to remind me I’m trying really hard and a big part of me wants to believe it.  A part of me even feels a sense of pride when people say ‘well done’.  I know logically that I am doing a lot of things to try and improve my situation –  from spending the last year working hard to get a pa system set up that works well,  to my attempts to initiate Dr myhill’s protocol,  to my attempts to manage my energy.  I am trying,  that much is true.  
What I struggle with is that there are a few basic things I find really hard.  These are things that are considered really basic things to help you manage and heal with M.E.. Those things are rest,  sleep and pacing.  I think my possible autism is a big factor in my trouble resting/pacing (though that’s a blog in itself),  and I covered a bit about it in my blog about sleep issues. 
I have tried many supplements and dietary changes.  These are certainly not simple.  Whether it be side effects,  the emotional  impact of switching from veganism to meat eating, or the long winded research and considerations that go in to trialling something new; this is not an easy path to follow.  Whilst I do commend myself for that (and writing it out this way also helps me realise how much of a big deal it is),  there is a part of myself that is determined to tell me over and over that I’m just avoiding the hard work.  All I’m doing is pill popping.  I’m not even cooking the meals myself,  so what are a few dietary changes anyway!?  This part of my brain reminds me that energy management is the pinnacle of management for this illness no matter what other treatments you do.  My brain reminds me of the pages on my Dr’s website that state that nothing else will work unless the basics are put in place. I end up feeling like a failure and like nothing else I do matters (though that’s not how that information was intended at all I’m sure). 

So I need to learn ways of being kind to my mind and taking care of myself… When I can’t take care of myself.  Of being gentle with myself when I cannot do the things that are most healing,  and to try and give myself recognition that I an genuinely struggling with those things and not just taking the ‘easy route’. 

Something isn’t working.  I desperately want to be able to rest better,  to sleep better,  and to manage my energy better –  but how?  I’m thinking perhaps I need to stop putting so much pressure on myself about it,  stop shaming myself,  and stop discounting everything else I do for my health simply because I am struggling with some of the rudimentary skills.  How can I learn to do these things whilst also respecting how hard it is? 

Any advice is welcome.  

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Sleep issues –  the naughty insomnia 

I was inspired to write this blog after reading a blog by ‘the tudors make me tic’. (the name of the blog makes me smile every time due to the play on words) Thetudorsmakemetic.WordPress.Com

I have insomnia.  That’s something I find difficult to say, for reasons that you might not expect.  You see I have what I’ve termed as ‘the naughty insomnia’.  This isn’t the type of insomnia where you lie awake in the dark for hours unable to sleep,  nor is it the type of insomnia where you wake up frequently or sleep badly (though I experience this too).  Instead it’s the type of insomnia where you put off going to sleep for reasons of anxiety and issues with executive functioning.  I feel ashamed when I say I have this type of insomnia.  Because of the fact I struggle to follow sleep hygiene rules I feel like this is my fault.  Occasionally this will be triggered further by someone lightheartedly saying something such as ‘you’ve only got yourself to blame’,  the odd post online of someone saying that this isn’t insomnia,  or even seeing others have success with sleep hygiene techniques.

Previously I’ve called it ‘nocturnal anxiety’ but that is just one of the issues.  Here is a long list of the problems I have with sleep.  

Delayed sleep phase issues –  throughout my life I’ve had difficulty sleeping at a reasonable hour.  I never made it to school on time and I’d sneak downstairs to watch TV when everyone was asleep even when I was 5. I also know that my sleep quality is usually better in the mornings.  I know this in part because I often fall asleep quite quickly after breakfast.  

Issues exacerbated by lack of light.  

Due to severe light sensitivity I live in low lighting with the curtains shut.  The only natural light I see is that whicu comes around the curtains.  It’s not enough to help my brain work out what night and day are,  or to prevent things like SAD. I just don’t get the cue that it’s night time and so it’s time to sleep.  

Anxiety and being triggered 

This is a biggy. I become anxious at night.  Additionally if something happens before sleep or during my pa assistance for the evening my brain and body go in to a state of anxiety.  If something triggers me (even something small) then I can find myself unable to sleep until 5,6,even 11am. My brain starts telling me I have to stay awake because  it’s not safe not to –  except it doesn’t do that in words so I have no way of reasoning with it.  It’s just a deep sense of dread of sleep along with feeling quite awake and/or becoming less able to identify signals that sleepiness is happening.  

Depression –  clinging on to doing things in the hours I am more capable 

I’m more capable in the early hours.  I don’t know how much of it is adrenaline but for example I am writing this blog at 3.40am and although I know theoretically that I’m exhausted,  I’m also formulating sentences and ideas so much better than I would during the day.  Why sleep when my day has contained so little and yet right now I feel able to do stuff?  The motivation just isn’t there.  Of course that doesn’t mean there are not repercussions if I do overdo it!  Like many people with depression feelings of loneliness and isolation are worse at night.  Switching things off makes me feel the most alone.  

Resting during the day

I have no choice but to rest during the day.  Total silence,  total darkness,  lying flat.  Sometimes I fall asleep, sometimes I don’t but i know it disturbs my body’s sense of when it is time to sleep.  

Executive functioning issues – lack of body awareness.  

This is an interesting one as it ties in to my experiences of physical illness.  I am not very good at knowing how I am feeling both emotionally and physically.  I don’t often experience hunger for example (i eat on a schedule),  and I rarely experience tiredness in the form of sleepiness. When I do it gets muddled with the sensations of debilitating fatigue. I don’t experience the normal healthy person experience of feeling tired before sleep and then refreshed after sleep.  In fact one feature of my condition is unrefreshed sleep and I can actually find myself feeling more tired when i wake up then when I first went to sleep. This again doesn’t help motivate me to try! 

Executive function issues – task switching

I also have trouble switching tasks which relates to being neurodiverse. I struggle to just decide to switch to an audiobook and turn the screen off for example.  Part of it is forgetting this is an option because I’m hyperfocussed, but also interestingly its these small transitions that are the biggest ‘change’  related anxiety in my day. My brain often just melts at the thought of it.  If you think of sleep and rest as a task then in the same way it’s very difficult for me to just switch abruptly from one activity to sleep. Something I am working on is transitioning from one task to another.  For example putting a podcast on whilst browsing online,  then gradually moving to just listening before sleeping.  One of the problems with this is remembering to do it.  One feature of neurodiversity and in particular autism is becoming obsessive and hyperfocussed on a topic.  I haven’t had a ‘special subject’  as such for a while but when I start looking in to something I get totally engrossed and can do this for hours.  The last few nights this has been powerchairs.  I know quite a lot about the higher spec chairs available on the market and seating systems available as I’ve researched so much over the years in similarly obsessive streaks.  I do the same with health treatment related things (though I can’t read research). This carries the additional problem of being an emotive topic because I am quite unwell at the moment and a powerchair is quite a way off… But my brain is obsessing about finding something that will eventually meet my needs,  so that I’m prepared (as if that will somehow move it closer) .  

I dont fall asleep whilst doing things

I don’t naturally just fall asleep in front of the screen or whilst listening   to something like others do.  It’s incredibly rare,  no matter how tired I am.  I fall asleep quickly when I am not occupied –  as long as it is timed right.  ‘But this is what sleep hygiene and the no screens rule is for!’  I hear you cry!… Nope.  I am working on it,  I truly am but right now there are many reasons why I find myself online late at night,  some of which I’ve mentioned and some I have not.  Crucially I do not know when that magic moment is when I would be able sleep. My best guess is that I am doing things for several hours after that point but due to my anxiety I’m scared to stop when I won’t fall asleep.  

side effects from sleep medication 

I think it’s possible I’m having paradoxical side effects and they’re keeping me awake after I’ve taken them. Also though I feel absolutely awful when I first wake up on these meds –  more so than previously.  This leads me to need sleep or else I will feel very ill.  This leads to me usually not starting my day until 4pm or 4.30pm as I’ve needed to sleep straight after a (fast as possible) morning routine which perpetuates the cycle of staying awake.  

I hope this blog has given you some insight that not following sleep hygiene doesn’t mean someone is lazy,  and there could be a variety of reasons why they can’t sleep besides the more widely known forms of insomnia.  

Depression –  finding things hard at the moment 

This was written off the top of my head and so may not be as articulate as I’d like.  

​I’m having a hard time and have realised recently that I’m depressed.  I think I have a natural tendency towards depression,  but I’ve been significantly more so recently.  

The pressure of living in a continual crisis regarding my care has taken its toll.  First it was managing why inadequate care and fighting for more,  then agencies dropping me at short notice,  or the repeated threats to do so. The accusations from agencies that I had behaved in ways I had never done.  Next came managing with temps,  then endless recruitment; then training,  management and retention.  Now more recruitment. 
Im pooped.  I’ve become so used to being in that crisis mode of thinking that I apply crisis thinking to everything care related.  If something isn’t quite right i worry it is a symptom of the bigger problem – a sign I need to fix things.  But I guess that’s more stress than depression. 
The depression has gripped me.  It’s taken the isolation I experience from not seeing friends and amplified it to tell me nobody really cares about me and I will never have a fulfilling life.  I’ve seen the hashtag #ichoosejoy around a lot, and it’s a philosophy I’d love to live by but right now my brain chemicals are all screwy,  and I just can’t.  As someone confined to bed with very little energy and functional ability I don’t do very much.  I wish I could find joy in the things I am able to do.  I guess I do sometimes find joy in the conversations with  friends or music I listen to but it doesn’t feel the same as joy as when I’m not depressed.  When my brain is in its less depressed state these things give me emotional energy, and help me build resilience… But that’s not happening.  They’re more of a distraction from the stress and pain with little moment of feeling the clouds lift,  sometimes even giving clarity but never light.  
My options for dealing with this are limited and that scares me.  I don’t have many people I can speak to about my mental health (though I’m trying as of today with one) though I would never expect a friend or relative to become a therapist for me.  Therapy is also near impossible.  I cannot manage social visits let alone a therapist visit.  I cannot so telephone or Skype.  I tried an online asynchronous chat for therapy but it was high energy for little support.  What support I got felt generic and not really understanding my situation.  Another option would be email therapy.  Perhaps this is worth it occasionally but tricky to do it regularly.  I found a site that does it for £30 for up to 1000 words.  I have written to the samaritans but my email has yet to get through their system let alone receive a reply.  
I wish there was a magic pill to take to improve things.  Unfortunately I have bad reactions to Ssris and don’t feel those are an option for me.  I was told years ago that if I wanted an alternative medication I would need to see a psychiatrist.  That’s not really an option right now.  Aside from the energy this would take,  it could also go very wrong if I didn’t receive a psychiatrist who was understanding of ME/CFS as a physical illness.  There is plenty of disbelief in my social care folder and I assume medical folder already.  I have also committed to trying to stay away from any new medication as I am trying it decrease my toxic load from the many medications I already take.  I realise this isn’t an option for everyone and for some mental health medication is life changing or life saving,  but given the above and the bad reactions I tend to have to new medications,  I don’t feel this is an option for me right now.  
Unfortunately this leaves me feeling lost.  I want to do more than just survive.  I don’t know how to improve my mental health.  
My mental health has also been worsened by sleep problems,  and a string of viruses impacting my physical health.