Sleep, tea and toast

Today has been a long long day. I don't mind except that I'm pretty worn out and exhausted. Last night I got some confusing perplexing news. What I was told by one doctor was completely changed (COMPLETELY) when communicated to another doctor and the result was me in tears, ringing my psychiatrist bawlling to her on the phone for about 30 minutes. Today my eyes still hurt from so much crying. The problem for me with this major change in what they want to do is that I can't actually do it which could result in pain beyond what I can cope with which ultimately results in me feeling and acting in a very suicidal manner. For those that don't know, people with chronic pain (especially if its inappropriately controlled) are 30 times more likely to take their life via suicide. That's quite a high statistic. And in my case its all very unnecessary, I don't understand whats going on. It's stressful.

Yesterday I also found out that the Office of Housing wants me to put a different region on my form which is okay except I REALLY do not want to live in that region. I want to stay in the region I'm in now. I know the trains and buses, I know where to walk, I don't have access to all the nice restaurants like I did in my former location but still its familiar and safe and feels the most like home of any other suburb in the area that we live.

So I exist in this panic about what is going to happen and whether I can cope.

I know that some people would think I was selfish for even thinking about something like suicide in advance, they don't understand is what it coems down to. A lot of people say they do...but they don't because if they understood they wouldn't do things to inhibit it when it becomes (IF it becomes) necessary. Who knows, maybe my meds will all get sorted out easily and its all a mute point. I don't know.

But something happened today that made me feel good and give me some hope of just connecting and being cared for. It's so random it might not even make sense. But I got to the place where I was meant to catch up with someone and I fell asleep on the little couch. I was asleep for almost 2.5 hours plus another 30 minutes later on. I wasn't woken or stirred. I had a kitten tucked in with me keeping me a bit warmer and company. Then when I was awake, I was very politely and kindly given some herbal tea (oops a bit hot to begin with but nice to drink once it had cooled down) and some toast. This person was going above and beyond in caring for me. When I had to leave even then they put their conversation on pause and said goodbye for the day. It as all so simple, but so nice. So so nice to be in one of the safest places I have and just REST, just stop and chill out. I wasn't stressed that we weren't talking as was the plan, I wasn't stressed that I was eating and drinking....I just felt so much compassion and being cared for, it was nice.

I KNOW that people care about me....but something I'm strruggling with lately is that I am expected to fit into their idea of a friend or their idea of how things work but I'm not really allowed to have my own opinions....it makes friendships hard when that respect isn't very strong. It's tricky too because lots of people I know are hurt, sick or broken and they don't take criticisim very well, they either can't understand it or they get hurt by it, neither are my intent. But I need people to understand ME, all of me too (or at least all the parts I reveal to them) and accept ME as I am....someone who sometimes needs safe sleep more than a conversation.... (Note: I also need to find a way to be a bit less bitchy when people don't listen to me or understand me as I seem to have very little threshold right now.)


A song I once used to listen to a lot over and over for hours in a dissociated state... I want to share it with you.... life is hopeless and things we do are helpless....but ultimately there is one person that can help us and take us from the maddness, the craziness....into the light. (Please note the youtube video may be triggering for some people.)


Kenny Marks - World Gone Mad
http://www.youtube.com/watch?v=YBSl11GjedU

She's never been lonelier.
And the world's closing in on her.
Maybe she should just end it all,
she can't take anymore.
Now the dark clouds are everywhere,
And her broken heart hasn't got a prayer.

Oo, life ain't fair in a world gone mad.

She never knew love before.
And he's a boy that she's fighting for.
Doesn't matter that her momma says,
"He's a love you're goin' lose."
She never listen to her momma now,
It's her life, she'll make it work somehow.
She wants a boy and she wants him now,
In a world gone mad.

Chorus:
In a world gone mad,
It's a choice you can be the chooser.
In a world gone mad,
Be a winner or be a loser.
You can do as you please, be it good or bad.
In a world gone mad.

I never knew who my father was,
Never knew when it all because
He left a long time ago,
to chase the wild wind that blows.
It's the rage that I feel tonight,
It's the anger that makes me want to fight.
I'm goin' live my life in a world gone mad.

Oh, oh, oh.
In a world gone mad,
Oh, oh, oh.
It's a choice you can be the chooser.
In a world gone mad,
Be a winner or be a loser.
You can do as you please, be it good or bad.
Yeah, In a world gone mad.

There's a truth that can answer lies;
There's a love you can recognize.
He came a long time ago for the good and the bad.
He's the way you can make things right;
He's the only truth in the darkened night.
My only prayer dispite this world gone mad.

Oh, oh, oh.
In a world gone mad,
There is hope for the broken hearted.
Oh, oh, oh.
In a world gone mad,
There is truth that can get you started.
This love's going to guide you,
to know the good from the bad.
Oh! Oh yeah, in a world gone mad!

Oh, oh, oh.
In a world gone mad,
There is hope for the broken hearted.
Oh, oh, oh.
In a world gone mad,
There is truth that can get you started.
This love's going to guide you,
to know the good from the bad.
Yeah! Oh, in a world gone mad.

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.

Exercise

So as some of you may be aware, I'm working on increasing my exercise. It's a struggle. It's just so hard when standing upright, even SITTING upright, is thoroughly exhausting, let alone trying to do exercise. I have a plan which goes like this....working up to hydrotherapy x 2 per week, yoga (via DVD at this stage) x 2 per week, a walk x 2 per week. Then I have my strengthening exercises from the physio and I'd be working up to doing 3 rounds (approx 15 minutes each) of them x 3 per week and stretching x 3 per week. Then eventually I'd like to increase my play on things like my wii, doing stuff like getting dance dance revolution, using my wii fit, getting a surfing wii game and I also enjoy playing wii sports. Now all this is a lot for someone who is almost housebound and when IN said house is almost entirely limited to her bed and the couch! So it'll take time. I am struggling with motivation and also with energy in general. The thing that keeps me going? I want to learn to surf! Like I really really REALLY want to learn to surf, I want to get good enough to use a short board (which is essentially the type of surfboard used in competitions) and I want to do something I truly enjoy....that means I need strength, flexibility and balance, so I think my exercise plan is appropriate.

A problem though? One of the biggest problems with me/cfs is that there is a delayed fatigue response in the majority of patients. SO even though they may be able to maintain some energy after a day's exercise, if you retest them 1-2 days later their capacity is severely diminished. This is called Post-exertional Malaise (PEM). With me/cfs if you push your body too hard for too long (this includes mentally as well as physically) your body WILL crash, it WILL go past the tipping point and things will not be happy. When you're past that tipping point and falling failing over the edge of the cliff, there is no way to really get back up that cliff, or at least in general, not for a very long time. I worry that with my exercise (plus study and friendships and therapy) that I'm going to send myself not just tipping off the cliff but with a flying leap! I really don't want to get any more unwell, I don't think I could take it....especially when there is no end in sight (which there isn't really for me....I just desperately hope that doing trauma therapy will help to reduce additional me/cfs symptoms that are exacerbated by trauma)....but I REALLY want to learn to surf. SO I'm trying to take things very slowly and build up very very slowly and keep my aim in sight. I mean once I learn to surf (and an amazing friend is going to do the surfing camp with me so we can learn together!), if all I get is two waves before I crash in a heap that day, maybe its entirely worth it. To do something that (hopefully) doesn't lead to dissociation, is something I enjoy and is something that's not about being unwell or working or money etc so on and so forth.

But I was reading this article (http://www.occupycfs.com/2013/01/18/comparing-exercise-advice/) recommended by a very good friend of mine about exercise in me/cfs. Because my heart is almost constantly tachycardic these days (even when I'm laying down, let alone when I exercise), I'm pretty much already at the threshold of physical activity just from EXISTING! Let alone trying to exercise. The article made a lot more sense and didn't discount exercise...but on the same page didn't advocate for it the same way GET does (Graded Exercise Therapy - a form of treatment often encouraged by older school me/cfs physicians and in some circles where patients are not quite so unwell...but the studies I've seen are poorly done and don't have very many participants and thus anecdotal at best). See I think GET has a place at the right time....and we could argue that what I'm trying to do is a form of GET and I guess it is...but thanks to this article I discovered, other than my heart racing is giving me a work out as we speak, that also the type of things I"m trying to do are perfect for me/cfs sufferers especially the hydrotherapy and yoga! Yay go me!

ME/CFS is such a complicated illness and is complicated further by a great many other things. But it takes away so much from so many people. It's a hideous horrible illness. I'm doing 2 subjects this semester (although one is a year long subject) and I wonder if I'm even going to make it to classes regularly! I'm anxious to say the least. Then on top of that I want to do exercise! AND learn french (topic for another day).... I'm starting to think I'm being a bit ambitious...but at the same time, I think I need to try. Because resting plus therapy isn't quite working...I know that entire bedrest for cases like mine have anecdotal evidence of helping, but its COMPLETE bedrest which means I would need a very compassionate, patient slave (or set there of) to help me out. So I'm a bit mixed up about it all, but I do hope that I can get my yoga DVD (waiting for delivery) and start there...and just keep going as I can... I used to love exercise, even with the horrible pay back...besides, having more flexibility will help my joints and my bones, doing some weight bearing exercise will help my osteopenia and hopefully some of the bone pain (although the later is dubious at best) and more strength, especially in the core muscles, will hopefully improve my posture a bit (although I think as well I need to keep remembering about the Ambassador as well as not needing to become invisible and at one with walls also)...

I guess the thing is, exercise is important, in the right setting with the right help...lets hope this turns out to be a positive experience! I really really want it to be!

Insomnia and hypersomnia

For a very long period I've suffered with insomnia and hypersomnia. Its incredibly frustrating. If you don't sleep night after night after night, you learn to adapt and as frustrating as it is, you put things into place to get you through the night. Similarly if you sleep for way longer than is normal you can also put things into place to get yourself through, like making appointments later in the day, going to bed earlier. But what do you do when you suffer from both? That is me.

With me/cfs its pretty normal to not sleep well at night and then end up sleeping throughout the day. I think it comes down to not having as much stimulation at night and thus it is easier for the body to stay awake. For me this is further complicated by the DID which leads to parts being hypervigilant and staying awake even when I think I'm asleep and for parts getting up and doing things in the night while I think I'm asleep. None of this is helpful to a good nights sleep. I can't plan. It doesn't seem to matter how much sleep hygiene I employ, I still can't sleep regularly or consistently and right now....it's driving me crazy!

I'm so very very tired and I want to sleep, I NEED to sleep. I was put on bed rest on Wednesday and really I didn't start it until Saturday so I still have a few days of bed rest to catch up on, probably more because I didn't do so when I was told. But I can't sleep! I take medications to help me sleep and I still cannot sleep :(. This is driving me crazy. I hate going out during the day because I'm too tired. People who catch public transport to me, well they have SOME energy, maybe not lots but they have some, why? Because I can't do it. It makes me so much more sick then I already am. I can barely even walk 20 meters at the moment without wanting to pass out. All of this makes me tired. I know i have multiple illnesses that can account for all this, I know its not going away anytime soon. I know I'm going to continue to have nights where I don't sleep at all, nights where I don't sleep until 7am and nights where I'll sleep for 16-32 hours straight without the aid of medication (no joke)! I know that I can't pick these nights. I know that it doesn't matter if I nap in the afternoon or if I don't....none of it changes whether I feel like I'm going to collapse from sheer fatigue that is beyond just being a "wee bit tired"....most of all none of it changes the frustration I feel on nights like tonight where holding my body up to even write this post is causing so much pain and so much fatigue but laying down is driving me batty.

I don't know what to do, I don't know if there are answers, I'm leaning towards a "nope" in that department for now....but I know that I can't keep doing this. I need rest. My body needs rest. I need REAL rest too, where not just me but all the other alters/parts also rest. I need it to be consistent and helpful....I need to know that I'm going to go to sleep and I'm going to cry out of sheer and utter frustration. And this is just one thing that I'm dealing with right now, there are far too many things to list, FAR too many. I just think that some of those other things might be a tad easier to exist with if I could get some damn sleep!