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.  

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.