Realisations of the health kind

**Please note that this is quite a bit of venting and frustration here, it is certainly not what it would be hoped this type of post this blog will consistently have, not because there is any shame, but simply because its quite intense and personal. Plans to return to more informational posts soon!**

Struggling to juggle University study with having ME/CFS and trauma (and whatever symptoms that brings with it) is starting to radically take its toll. CFS is the WORST name for this illness, if you think its just about being tired beyond the point where tiredness could remotely be considered something called tiredness (trust me, ME/CFS fatigue is NOT that nice type of fatigue that you get after a hard day at work, yes I did say NICE because you do something, you feel tired and you rest and you recooperate...with ME/CFS you feel more like a few 16 wheelers drove over you, then backed over you, then you got hit by a train and then someone decided that you had to be chased you for hours on that already absolutely exhausted state, then you might come CLOSE to the fatigue of ME/CFS....and that doesn't account for the dozens of other symptoms related to ME/CFS, its not just about fatigue....) anyway, today I was up at 4am to start studying and working on my assignment. Why so early I hear you ask? Aren't you tired? Shouldn't you sleep in?

Well see I have found that if I allow my body to go into a deep sleep (which seems to occur around 6am-7am int he morning) then I am useless for the rest of the day. I can go to the toilet, maybe watch some tv (on my computer) maybe even talk to someone for a bit, but I'm pretty useless in the thinking department. So I need to wake up after I've had some rest in the dark and quietness of the night but before my body can go into the next stage of sleep. So I wake up early and study and rest in the afternoons (sometimes in the morning AND the afternoon). It works, in the sense that with medication interventions and this routine, I can just get my uni work done, usually with quite a few tears.

But I'm struggling more and more and more, everything is getting harder every single day. When I'm very unwell I start to get swelling over my body, which ironically makes me typically look healthier and more awake then I feel! How is that for fairness! But my mum knows the clues...she looks for blue around my mouth. Basically the more tired I become, the more cyanotic I become. I have proven this in the emergency department time and time again as my sats will drop below 80% but I'll be sitting up and talking, or at least staring into space....nothing to indicate that my sats are so very low (and no its not me wiggling my finger on the pulseox machine!). Today, apparently I was blue around my mouth, down my chin, up my cheeks and all around my eyes! This is pretty extreme. It is only week 3 of university and already I'm getting extreme cyanosis, this isn't good. This is of concern and yet I have NO idea how to deal with it.

I know that with ME/CFS that oxygenation is problematic at a cellular level, even though its classified as a neuro-immune disease, the mitochondrial cells do not carry oxygen around the body properly because they're deformed (in a very basic sense)...NOT HELPFUL. I also know that many people with ME/CFS sit on the edge of heart failure when sitting up and standing up and when laying down have the same capacity as normal people who are sitting and standing....and given my heart is already struggling with the prolapse and tachycardia, this really isn't a great combination of unfixable symptoms.

So I have some understanding whats going on but I have no real idea what to do....I feel like I'm slowly killing myself and there is nothing I can really do about it. When I say slowly I do mean slowly, very slowly...but its uncomfortable and difficult and unpleasant...I want to get through university, I want to complete this course....but how I just long to hibernate.

I know that trauma symptoms can also be adding to all this, but so much of me wants to hide from all that too, like if the DID was protective, why am I screwing with a protective system? Maybe I SHOULD hibernate and just do what is absolutely essential for existence right now. I don't know. Know answers but I seriously do not feel okay...I feel odd...things are wrong, things beyond my understanding and things that make me want to hide out of sheer desperation. What a mess.

My recommendation to you, don't get ME/CFS, don't get DID...and if you do... be super careful and don't push the envelope to hard, the payback is an absolute bitch.