So discouraged

I’m not having an easy time lately. My mental health is iffy with a lot of anxiety, for months now, and depression setting in pretty hard this week. I’m in constant pain because of my back and something is going on with my CFS/ME. I’m completely drained and mostly bedridden. Because of this I missed three physiotherapy sessions, plus one of my DBT coping skills classes.

I’m so very, very frustrated .  I have no answers. I just have to try to hold on, rest, get to physiotherapy and class when I’m able, and wait till January 10th to see my psychiatrist for possible solutions to lessen this gnawing anxiety and boost my mood a bit. Having my paxil poop out on me after 10 years has created a real disruption in my mood and trying all these new drugs has been a year long, not to successful trial.

My suicidal idealisation is becoming stronger each day as I feel I’m just too worn out to keep trying. If the thoughts get too strong I’ll have to go to the hospital, but I really don’t even have the motivation to deal with all that shit. Hours and hours waiting and I’m usually told there is no space, so they just increase my meds and tell me to go home. I’m just so tired of it all. I only keep going for my family. I’ll end this on a note of gratitude for them, the support they give me, the love and understanding .

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Struggling 

I have not been well the last 2 weeks and only managed 3 walks  (6 min) per week. I feel completely drained.  I think it’s from the very busy days I have on Thursdays. I go to physiotherapy, have a 2 hour class and drive 1 1/2 hours plus usually run an errand, like picking up my mail, after weeks unattended.

Anyway, I am bedridden 3 day’s after, not able to cook or even get enough fluids down me. I feel extremely weak. I don’t know if the severe fatigue is from having such a busy day on Thursday or the core building exercises the physiotherapist gave me, or a combination of both.

I HAVE to do the exercises though. My back has been so bad since January, and the pain is not helping my fatigue or overall mood. They would be easy exercises for most, but they are difficult and tiring for me because of my severe deconditioning. I do still do them almost every day, even if it’s the only thing I can do.

I’m really worried about this week as I have physiotherapy tomorrow and Thursday plus class. Wish me luck.

Update: missed Tuesday physiotherapy session as too exhausted.  Am becoming increasingly depressed, agitated and anxious.  I have no motivation and barely care about anything. I don’t see my psychiatrist till mid January. I don’t know if this is S.A.D, my my dad’s recent death or medication related. Sucks.

Deconditioning 

My CFS has left me so deconditioned.  I need to reverse this as I’m getting older and need to be as strong as possible for the journey ahead. I figure it might prevent some of the many problems that come with old age, especially loss of muscle mass. I’m hoping it will also improve my balance so I don’t end up falling, breaking a hip, and then in a nursing home. 

I’m 50 but I desperately need to improve my overall physical condition now, no matter how long it takes, so I can have a better quality of life as I age. If I walk daily, and keep adding a minute a week, in one year, hopefully, I’ll be able to walk an hour a day. Then maybe I’ll add in some gentle strength training or tai chi etc. I just hope my body cooperates with me.

PACING WITH CFS/ME/FIBRO

Pacing is so hard. I only know too well. I spent my  first 5  years with CFS  driving myself beyond even what a healthy person would.  I was in complete  denial and thought the more I forced myself that it would go away. Of course, it just became worse and worse and make my CFS chronic and severely ingrained.   

Since then I struggle heavily with trying to pace myself. I just can’t seem to do it. I get really, really overexcited when I’m stimulated in any way, like listening to good, upbeat music, etc.  In company I  I get so overexcited I wear myself right out and  crash for days and am tired for weeks after. Overactive sympathetic nervous system they say. Kinda a constant  fight or flight thing. Neurons firing in a frenzy.

So for me to pace myself I need a very calm, routine, almost hermit like life so that my energy can  stabilize. Once my CFS become stable (my baseline) I can then work on slowly building myself up.

Too bad I have to choose between having a life, going out, visiting, and just having fun, or a quite, lonely, but paced life, where I don’t constantly crash. I swing between these two poles all the time.

I really have to master the pacing strategy before its too late, before I get worse and worse. I find I’m getting worse as I get older. I am becoming weaker, have no endurance, and need to sleep/rest more and more, after doing less and less.

I guess this means I’ll have to lean far to the more lonely side of life for maybe a year.  And also learn to better control and calm my nervous system through meditation, mindfulness etc., which I take classes for.  Then I can slowly start exposing myself to, and hopefully withstanding, more outside stimulation without it making me crash. Wow. This is a huge long post. Sorry.  Hope it makes sense.

  

Walking to Pace 

​Walked 6 days this week. Only 5 minutes at a time but it is a start. Today I can increase to 6 minutes each walk. Feels stupid to set my timer for 3 minutes, walk till it beeps, then turn around, but if I just keep on going till I’m tired, I have an extraordinarily hard time getting back.  Then I spend 3 days in bed and  there’s no walks. 

So by pacing myself like this I get out every day. Dr’s orders….pace,  pace, pace. Build up very slowly. Be patient. I did miss one day as I was badly crashed from tramping through the woods. Mostly walking at night which I love….and so bright last night from the supermoon. It was magical.

Immersion 

How exquisite it would be to release myself out upon the welcoming ocean,

Drifting on my back, unencumbered,

by clothes, or thought,

Buoyed by the waters, embraced,

the five senses my only companions.

Lick, and taste my crusty, salty, wet lips.

Breathe, and smell salinity, slight tang of fish and seaweed,

Ocean air seeping into my nostrils, infusing my body.

Feel the softened old baby blanket of the waters caressing over my body,

licking across my belly and nipples, tickling the hair between my legs,

under my arms,

Gently cupping my back, legs, head, buttocks.

My hair, languid, spreading out  and mingling with the sea that softly combs through it, like my mother’s fingers when I was young. 

Faint call of the seabirds,

Low throm of the wind,

The musical swell that accompanies the ever so slight rise and fall, 

Ascent and descent of my body,

A low rhythm, almost imperceptible, 

Tiny waves creating tiny slaps, as water meets flesh.

And in my vision blue-grey skies, sprawling on and on into infinity,

Sun piercing down through ever changing clouds, warming my moist exposed skin, heat on eyelids, making them sweetly heavy,

And the very sea itself, mimicking the sky, endless, carrying me gently on into eternity.

 © 2016