I’m trying to remind myself that I’m still that small bit calmer than usual. Things have changed; they’re still better. I’m still trying. I’m not sinking as fast or easily as I used to.
But I’m falling… The depression is agonising. I’m exhausted. My muscles are heavy, uncomfortable and sore. My mind is the same. I’m tired of closing myself off from the world. I’m tired of choosing between letting in the sunlight or being able to think slightly more clearly. It’s so sad to think that I’ve reached a point when a single car journey can set off all my ME/CFS symptoms and leave me like this the next day. The past two days it’s taken me hours to get out of bed, only to return and stay here for most of the day. I’m tired of feeling the guilt and depression from making the choice of not getting up and doing the slightest thing, because it only makes me worse… or starting, only to fall back almost immediately, feeling more wretched and left to wait for it to gradually improve. I can’t bear being so self-absorbed. I don’t like the fact that so many of the things me and my family do revolve around my issues. I don’t to live with this illness. I don’t want everything to come back to the pain and the struggling.
My body has made an enemy of the world. Any bright light, any sudden jolt of movement, any loud noises… and I’m fading further and further into confusion and pain. I checked the local ME/CFS group webpage and they’re discussing a talk where people can share tips on pacing and energy conservation. I’d started to come around to the idea of having this for the rest of my life, but then I heard of people being cured and started to build hope. Meanwhile I got more ill… now the idea that it could last indefinitely is unbearable.
Today I don’t want to fight. I don’t want to keep making the effort to come closer to peace, to slowly heal… to slowly join the world again. To cut away my life in one quick moment, like cutting a hair, is the best thing I can imagine today. The pain in my mind is too real, too overwhelming. Today I’m living as my former self: I can’t bear facing the pain. I don’t want to keep trying to transform it. I don’t want to keep trying to learn. I just want a childish dream to be fulfilled: for the pain to end of its own accord.
Part of me wants to fall further. I don’t know how far I’ll get from fighting. If I could know and feel where it might lead to, maybe I’d never pause on the way. But my imagination is lacking.
It’s the funeral of one of my grandparents’ neighbours today. She lived across the road from where I used to live. I hardly knew her. I’ve seen her since, but the last thing I heard her say was when she was calling, ‘I hope you have a lovely Eid,’ to some of the neighbours. Lots of neighbours were going to go today. I said I wouldn’t because I knew I’d crash quickly after I got there. I felt selfish. Some people think it’s lucky to have this illness. They don’t think about all the symptoms, but even feeling physically stuck and staying in the house is hard. Not every day is like this, but you never know when you’ll crash again. Time goes by so slowly.
I feel like suicide is haunting me. When trains roar past I think about their impact.
I feel awful physically. My muscles hurt so bad whenever I try to sit upright. My head is spinning. This is one of the very rare times that I feel on the edge of tears and completely full of frustration because of the pain in my muscles. It would help to eat, but I feel so nauseous. I’ve lost a bit of weight lately. I used to eat so much despite the nausea, because it gave me the tiniest bit more energy and kept the dizziness slightly at bay. But it’s harder now.
It’s the evening and the light is low, so I’m going to finally open the blind to let some light in. Hopefully I can eat and the painkillers will set in. I’ll lie down and practice working on the negative thoughts and desperation. I’ll keep trying. I just wish some of this could leave without my input, without my waiting. It’s futile but that wish, and all the pain behind it, is eating me inside.
31 comments
Our world is a rollercoaster, Trix. Sometimes my body is okay, but my mindset isn’t (most of times my biggest problem is my emotional health, since I’m basically used to my chronic pelvic pain by now), sometimes it’s the opposite, and then everything falls apart. Finding balance is almost impossible.
I still blame myself for staying home when one of my friends committed suicide a few years ago. I was so depressed. I couldn’t deal with that… Her loss… Her family… And especially with the “selfish” thought that she had died and had finally found peace while I was still stuck here in this limbo. I understand.
You’re going to face days and days. I know you’re strong though, even when you feel like all you can do is stay inside and feel all these emotions and all this pain… Sometimes we need that too; sad, melancholic days of apparent defeat to remind us to keep going strong in the next morning. I truly think you’re inspirational.
Big hug
Thank you Tris. My emotional health is by far the thing that affects me the most. I’m trying not to let this push me over the edge. You’re right, finding a balance is so difficult.
I know I’m strong enough too. I can create a kind of force to push through it now, but it’s difficult. When you slip fast and fall deeply, it’s a struggle to make remember any of it. Thanks for the reminder.
You are never selfish. You’re sick. You have real problems. Only assholes look askance at people who are sick. Fuck ’em. Fuck ’em all with a bassoon played by a very large hairy ex-con named “Tiny.”
I’m sorry the pain is so bad. My Dad has untreatable rheumatoid arthritis and ever bump on the road hurts him terribly and he’s too weak to get out of the passenger seat so I have to lift him out ever so gently. So while I’m standing around horrified about his fragility, he thinking more about which coupon to use for lunch than his pain. Amazing, huh?
I wish I had a giant roll of cotton puffs held together by marshmallows and baby clouds. I’d build you a giant soft cocoon to protect you and keep you safe. And no matter how much I wanted to, I would never inject the eggs of my kind in your thorax because you are my friend.
Many hugs!
It’s amazing what a healthy mind can do, isn’t it? My dad has chronic pain, yet he’s still so happy. He went through quite a long (at least, it seemed it while I was watching it) phase of drinking at one point. He hardly talked to me and seemed hopeless and introverted… until he drank. Then he got an unrelated illness, nearly died, had a couple of weeks in hospital and came out a completely new person. He was forgetful and grouchy for a while, but he had his drive back. Now he’s back to himself and he has that quality about him every time I see him.
Thank you. <3 As usual thanks for the totally bizarre images, I love it. You always know how to make people feel better.
Trix… You are honestly such an awe-inspiring person. Even when living like that, you still reach out to others here with kind and loving words, when no one would blame you for being be bitter and mean.
I have such a mad respect for you, if you’re falling then I’m putting out the trampoline so that you bounce back…
Thank you freeroma, that’s so incredibly sweet. 🙂
I’m not good with words, instead i’m giving you a big hug. You’re a wonderful person. Don’t give up! Please!
Thanks Darvin. 🙂 🙂
Ohh dear Trix, you just described exactly what I am going through. I admire your resilience dear, you have a kind heart. You always have the right words to heal our wounds and hoist us from our vegetative states. *Bear hug*. Be well sister
Thank you so much. I’m so sorry you’re going through it too. Consider yourself bear hugged too. 🙂
It amazes me how much easier it’s been writing my story than coming up with the perfect response to practically anything you say a lot of the time -_- … I swear, it amazes me every single time we talk, how you have such a kind and gentle and caring soul, when you have all the rights to be a complete grouch (summary of freeroma’s thoughts). I, in no way, shape, or form, will ever be able to fully comprehend what you are going through (especially after I looked up what ME/CFS is, and got a little scared when I read that there is no way to tell if a person will ever completely recover) but know that whenever you want to just talk, I’m willing to drop what I’m doing, just for a little while, and try to improve you situation somehow… You are inspirational, you are wonderful, and I am so glad that I’ve gotten to know you a little better over the past week or so.. I send lots of hugs and my love your way, always…
Thank you for your lovely words. <3 You're a breath of fresh air in my life. I'm very grateful to have you here. You're precious to me.
I have ME/CFS, I know exactly how you feel. I’ve had it almost 9 years. (Sorry it’s a short reply my friend has just arrived). x
Thanks for the reply, Snowdrop (sweet name). I’m sorry to hear you have it too. I’ve only been ill for 1 year.
Do you mind me asking what triggered it?
Compared to a lot of people it came on quite gradually and I don’t know the exact trigger. My mum (who got it post-virus as a child) thought it could be my depression/anxiety, since they say it can be caused by psychological trauma. I was actually at a much better point than I had been with both, so it would be a strange time for it to come. It was last summer that I started getting ill, but I remember less than six months before that visiting my dad in hospital and being tired each time I came. (Bright lights affect me really badly now, so I don’t know if they could have made it worse even back then.) My brother commented that I was always tired, which I was, but I always thought it was the depression. I’ve been that way for years. I don’t think it was close to being mild CFS, but I did wonder at one point, although there weren’t any other symptoms. I really started getting ill last summer though. Nothing happened – I just started finding it hard to sit upright or make sense of anything I read anymore. Since then I’d say it’s gone from mild to moderate.
I wonder quite a lot about the trigger, because there isn’t an obvious one and it took months before it really kicked in.
My ME was mild before it became moderate too. If you’re indoors a lot be careful you don’t become deficient in vitamin D because the body generates most of its vitamin D from sunlight (I found out the hard way – tiredness and body aches become worse when vitamin D is too low). I don’t mean to preach. Feel free to ask me any questions, any time. x
Thanks for the offer. 🙂 I had ridiculously low levels of vitamin D at my last blood test. I took tablets and ended up taking too much just before I was meant to start cutting down on the tablets, so I had a week or two where I literally never stopped drinking, haha. I was hoping that it would help my aches and pains a bit but I didn’t notice any difference.
If you get D vitamin deficient try to get it from foods. P h a r m a version of it is plain out poison.
Generally I’d always rather get something by eating healthy foods than taking supplements, although foods high in vitamin D are disgusting… but why do you say it’s poison? Just curious.
Read it in several places and it just kinda made sense to me, same with folic acid. A synthesized vitamin is not the same as the natural one, and the synthesized version of D is used for rat poison as well. This one might be me wearing my tin foil hat but you can never be too careful, check your levels regularly and you should be fine tho.
I see. I just asked because I tend to think of supplements as being less sufficient rather than damaging.
Yup, that’s the other thing. You put extra stress on your liver in order to gain nutrients that aren’t the same as the real ones. Funny how with all the technology that we have nowadays, one of the main things we should have improved on (food and nutrients in general) is getting increasingly worse day by day.
Oh God, yes. I strongly agree with you there.
I could not, and cannot, imagine what you are going through… i mean, depression fatigue is one thing, but what you are going through…I hope that one day soon your body will reflect your soul- something that is beautiful and resilient and glowing and bursting with a drive to live. You inspire me to be a better person Trix. Thank you for your ever present words of wisdom, and for being a beacon of strength for all of us. Many hugs to you, love. 🙂
Thank you so so much. You inspire me too. Your words always help me rise up and feel more of that drive to live. 🙂
That’s what I’m here for 🙂
Sorry to here you are going through so much. Open those blinds a little and take in what light you can. The fading day, the starry sky, the warmth and glow from a bunch of sad souls on a suicide forum… Take in that light and hold it dear so it may get you through your darkest moments. Even if you can’t move forward, remember that light. Let it guide you enough to reach out. When it’s too much, we’re always here to help you through the darkness.
Take care.
Thanks, you. That comment means the world to me. 🙂
Need to talk?
Thank you for the offer. 🙂 I’m doing okay (not an emergency situation or anything), but I’d be more than happy to talk.