The trip between now and understanding

Accepting that pain is the dominatrix of my life, and trying to get some of the power back

[thepathinfog-blog]

If painsomnia doesn't kill me, the utter crap I'm having to waste time watching will definitely be a big contender. My headache is too bad to read, or spend much time on the Internet, my synaesthesia means I can't listen to music too much, my constant shakes means I'm incapable of making a cup of tea. I feel like a child, counting down the minutes til home time, only I'm counting down til it's not too obnoxious an hour to call someone to come and help! I hate pain.

Thepathinfog

[chronic-confessions]

What is mental/brain fog?

The medical definition of Brain Fog is “feelings of mental confusion or lack of mental clarity.” It isn’t listed as a medical condition in itself, but a lot of chronic people consider it a major side effect of their illness or of the medications/treatment that they’re on. It can consist of forgetting things a lot, inability to form a clear thought, or a general feeling of ‘fog’ over your brain so you can’t grasp at anything. 

For me personally, I used to get such bad brain fog that I would forget my name, where I was, what I was doing, how old I was, the names of people I’ve known my whole life, what different things were called (like hands, feet, pencils, thing I’ve known my whole life, essentially), and other bouts like that.

[thepathinfog-blog]

You've been sitting there yawning, having done nothing all day except get up late, talk to your friends on the Internet, complain about being sick and tired, for the past 2 hours. When I tell you to go to bed, you feel the need to then drink half a bottle of wine. I do not understand your thinking, or lack thereof. I'm paying for the wine, and it really bothers me that it's your crutch. I'm so over this shit. I haven't slept more than an hour a day for at least the past year. I don't want to have a passing competition with you, but grow up, sort yourself out, and get your fucking priorities straight.

Thepathinfog

[thepathinfog-blog]

I'm so sick and tired of repeatedly asking you to share what you are doing online. You broke up with your ex for cheating on you. I cannot comprehend why you keep on doing secretive crap online but still be oblivious as to why I feel like you're cheating. I am sorry your life us stifled that because of my genetics, living us a struggle, but speaking more and nicer to the cats than you do to me is not convincing me that I chose the correct path.

Thepathinfog

[thepathinfog-blog]

Whilst I resent the fact I have an invisible illness that has broken me beyond repair, I can still contribute towards things that need to be done. I am so fucking sick and tired of you shirking your responsibilities, saying you "forgot" when I ask you to do something or don't even do the minimum of what your share is in making this work. I resent the fact you sleep all night, then have to have at least one 4 hour nap during the day. And I'm so angry I can't find the words that you won't go to the doctors regardless of the fact that you have done fuck all for 6 months due to "not feeling well". You're depressed. That's on you. You can get better (but are clearly choosing not to), where as my life from now on is a downhill slope measured only by increases in pain. No matter what I say, what I do, what I need from you, you still spend all fucking day (even when you are "napping") on your phone talking to people online. You're a fucking sponge and I don't know whether to leave, kill myself or kill you. You are the reason I have no confidence, you are the reason that I don't want a future, you are the reason I just don't care.

Thepathinfog

[spoonie-isms]

Something I despise

When people say dependency on pain meds is a concern for people with chronic pain. Like, hell yes, I depend on not being in pain! Why is it such a problem? Why do I get to suffer? I didn’t choose this pain. I didn’t choose this disease. So, suck a weiner and give me some relief.

[thepathinfog-blog]

I say let's deal with the addiction once the pain is gone. By not giving me (possibly) addictive pain meds, we're not addressing any issue, aside from my urge to repeatedly run the nay sayer over with my wheelchair!!

[fabwithfibro]

[thepathinfog-blog]

I really do struggle with your pathetic need to be “sick” when I’m going through flare up. Do you honestly need attention that much you have to “out do” my hell?? I truly cannot cope with this much longer. You say you love me…. I can only see you using me. I’m almost at the point of no return, and I do not know who to talk to, so that this is a rational issue, rather than me misreading the situation. I honestly believe that I hate you more than I love you.

Thepathinfog

[thepathinfog-blog]

I cannot get over how pathetic you really are, moaning and groaning when you aren't the centre of attention, and your blatant disregard for my wishes. You, sir, are the world's biggest fucking arsehole

Thepathinfog

[thepathinfog-blog]

Why do I find your secrecy, your need for attention, your incessant social networking so pathetic?? Because I do. And whilst I hate you for doing it, I hate me even more for letting you win. This has to end.

Thepathinfog

[thepathinfog-blog]

As an insomniac, claustrophobic, agoraphobic wheelchair user who isn't a fan of people, noise, irritations, the four walls of my earthly life are squeezing tighter than the walls of my mind. I wonder which will win. Will I go mental internally, or will I go postal at the prison my life has become, and the people who care for me? I'm scared that it will be external, which will mean physically hurting the people I love, but just as concerned about it becoming internal, as my mind is done with the bounds of earthly disabilities. What would you do?

The pain in the fog

[thepathinfog-blog]

When it takes two hours to psych yourself up for a shower, three hours to recover from one, how the feck are you supposed to moisturise? My skin is dryer than the Sahara. I hate my life.

The path in fog

[thepathinfog-blog]

What's my name again?

I started this post four times now. It’s getting a little bit irritating. You see, my brain, which was my one working thing (although, there are many theories as to whether invisible illnesses aren’t directly related to the amygdala - but that's a thought for another post!) has gone in to self-preservation mode. As in, memories are really upsetting me, as it's a life I will NEVER get back, so my brain has shrouded everything in a thick 70's horror movie fog, hiding a pool of the thickest treacle known to man. And I'm scared to go in there. Which is really scary. I'm in my (mid to late) 30s,and I'm too scared to trust my own mind. It plays tricks on me. For example, I woke up this morning, knowing that I had to write a list of things that needs to be achieved in order to move house. I've bought houses before, it's not that scary, but my mind no longer trusts me, my judgement, my ability, and I think it's probably right to. 10 years ago, I was in a high powered job, dealing with high powered people. Today, I'm so lacking in confidence, I can't even email a lawyer a basic response. Fuck it, 90% of the time I'm too scared to say anything to anyone because I'm so insecure of my being. I'm not sure I can deal with this much longer. Does anyone else know this feeling?

[thepathinfog-blog]

Sometimes I fear that I am no longer me, but rather a catch-all bunch of letters that basically allows doctors to drop me as soon as possible, because they don't have answers. Mostly I fear that those letters will be the death of me.

List in fog

[thatdisabledfeelwhen]

[ Image description: a pink image that reads “That disabled feel when it’s an accomplishment to shower twice in the same week, let alone two days in a row” ]

Submitted by death-star-canteen

[wnq-anonymous]

Sometimes people who need help look nothing like people who need help.

Glennon Melton (via wnq-anonymous)

True story!

(via fabwithfibro)

[spoonie-isms]

You might be a spoonie if...

People tell you they wish they had one small aspect of your condition when you wouldn’t wish any part of it on your worst enemy.

“I wish I could stay in bed all day!”

“I wish I could take as many naps as you!”