Diagnosis of Potential Myalgic Encaphalomyletis and Emotionally Dealing With It

My Public Journal

So, I had my doctor’s appointment. I asked my doctor about my Vitamin B deficiency and she said that whilst left untreated I could develop anemia, I’m not really deficient enough to be this exhausted and fatigued all the time. In fact she doesn’t think taking the supplements will create a huge difference in how I feel, and thinks that the root cause is something entirely different.

My doctor told me that she originally thought the extreme tiredness was a side effect of the complex post traumatic stress I was under, but now that I am almost pretty much back to normal psychologically she has started looking into other potential causes. She says she still thinks I could either have narcolepsy, but she also asked me if I had considered Myalgic Encaphalomyletis aka ME. I had but not pondered on it much more. But she is referring me to an ME clinic nearby to do more tests on me.

My doctor is amazing honestly but the thought of living with this disease for the rest of my life has really been getting me down. And I know that even if I do have a remission it won’t be forever. So yes I will have good days but I will also be disabled for most of my life. It’s absolutely horrible realising that I will never have a normal life and never get to do what I want, will never have enough energy to go to university, to be a scientist, to even have children. Just looking after my dog is hard work enough. When I got her I was in remission and thought I was getting better. Now I can’t even take her out for walks. It’s awful. I’d been wondering if I made a mistake getting her, but she’s my baby now and can’t imagine life without her.

Anyway, so I’ve just been feeling really emotional lately about all this. I have to admit that sometimes suicidal thoughts flash in front of me at times as I wonder what the point in being alive is, if my entire life is just going to be extremely sub-standard. To be honest I’ve found myself weighing up the pros and cons of offing myself versus just staying alive and barely getting by. But I’m really too much of a coward to do anything about it. I just fantasize sometimes, but usually when I feel really bad I struggle with thoughts of self-harming again. I’ve been four years clean so I try to let that keep me going. Besides it would just be awful if my boyfriend saw any scars and I’d just end up feeling worse, so it’s not worth it.

I am trying to stay unaffected but it’s such a battle when every day you’re fighting with your own body to work properly. And to be honest I blame my mum’s ex-husband the full way. That doesn’t mean I don’t forgive him, because it’s been so long now and I want his mental illness to be cured just as much as I want my own condition to be cured. But it’s a jarring realisation that one person fucked up your life for good. Maybe genetically I am wired to experience post traumatic stress, and wired for stress to trigger ME in me, but at the same time if my mum’s ex husband had not treated me so awfully, I would not have been triggered in the first place and struggling for the rest of my life like this.

I also sometimes think of my ex and whilst I don’t really blame him, since my step-dad caused the main damage, I still do blame him at the same time. If I hadn’t have met him… but it doesn’t matter. I was already on the wrong path. It was all my own fault for becoming psychotic in the first place. It was just his rejection of me that made everything spiral a whole lot worse. I guess I was already depressed and didn’t realise it. Maybe I was always just a ticking bomb waiting to explode. Now I’m just trying to pick up the remaining pieces but too exhausted to have a chance of putting myself back together again.

The worst thing too is people not really realising how sick you are. What I have is essentially an invisible illness so all they see on the outside is that I look fine. I really wished I’d seen a doctor months before it was too late, maybe I would’ve prevented this disease being triggered inside me. But I was deluded and thought I was ‘healing’ myself through spiritual techniques. In fact I now firmly believe that I was messing with my own nervous system through the power of belief/thought without having a clue what I was doing and just unlocked hell on my mind and body.

Well, it was a lesson learned, but unfortunately I will be living with the consequences for the rest of my life, and again I still can’t help but feel resentful towards my mum’s ex-husband. But on a positive note, she is getting married again this year to a really nice man who deserves her, and I am starting to see him as my step-dad now in place of the horrible father figure I had all those years growing up. So that may be healing on the psychological side of things at least.

Another thing is that I was feeling really insecure about my relationship with my boyfriend after realising I may be like this always. It was a difficult conversation for me but I asked if he still sees a future with me despite my condition. It’s fair enough if he didn’t. But he said although he wasn’t thinking about the future he didn’t see why not, and that my illness wouldn’t have sway over him either way. So that set my mind at ease. At the same time I still feel really insecure about the whole idea. About being dependent for the rest of my life, of never having independence, of feeling like a burden to those who love me because they will always have to care for me. I guess again I just don’t see my own worth outside of the illness and let it define me in some way. But I have always been like that. Blame my childhood – growing up surrounded in a haze of pain makes it the norm to identify with the negative in life.

To be honest, I feel like I just need to find a purpose for living. I can’t study and no online college has gotten back to me which is probably just as well since these days I’m so exhausted that even part time study makes me sick. So put human enhancement technological studies on the back burner. I will likely never get to do that. Also since I am pretty much atheist there is no purpose anymore in spirituality for me, and I don’t want to keep clinging onto it as a habitual distraction. I don’t know. Maybe I need to think about it a bit more, but those things are ruled out for sure. So now what? Hopefully I will find something again to light the spark in me again and give me reason and hope to keep living.

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