“My pain doesn’t matter because…”

Since the bombing in Manchester, I have seen a lot of “but my pain is nothing compared to…” This should stop. Yes, there are people out there grieving and suffering from trauma. This does not mean that your pain does not still exist. This does not mean that your pain does not still matter.

I have had at least three friends in the past few days use this phrase, and even more acquaintances. The truth is that there is always someone grieving. There is always someone experiencing trauma. This does not mean your pain and your trauma are “less.” The only difference right now is that it is a mass tragedy. This means you are more aware of the pain of others because it has been amplified by the number of people currently suffering.

You are no less important. Your pain is no less important. Mine is no less important. I have spent weeks trying to grieve while being ill due to side effects of a medication for my brain pressure. I was no less sick because of world events. In fact, I may have felt more grief in my own losses because I know others are grieving for theirs.

I missed my fiance’s mother’s birthday because of how ill I have been. I missed my grandfather’s memorial because of how ill I have been. Am I to dismiss my own grief because others are grieving? No. We both grieve. We both feel pain. We both feel loss. It is okay to feel and not compare.

There is no real “more pain” or “less” because people each experience pain, both physical and emotional, uniquely. When you say “my pain is nothing compared to” you are minimizing your own worth. You are saying “I don’t matter because they hurt” and this is simply not true. Please know that you can experience what you perceive as ‘minor’ pain while others experience major tragedy and loss, and your pain is still real and it still matters because YOU MATTER.

We’ve talked about others invalidating how we feel, and how hurtful that is. This is you invalidating your own emotions and I hurt when I see this because you deserve to treat yourself better than that. You deserve to treat yourself the way you would treat someone you love. Your pain matters. You matter. You ARE important.

~Brutally Honest Eccentric~

Grief, love, and the UK

So I’ve had a rough go of things recently. My friend lost her battle with addiction. My grandfather passed away. My medication for my brain pressure is doing HORRIBLE things to my stomach. I am nauseous most of the time. Grieving most of the rest. One thing that I have always used when I’m not doing well as a coping skill is distraction. One such example is my phone games. One that fills my soul a bit more is discussing UK politics, although I’m American, I have many friends in the UK and their futures matter to me.

If you are in the UK, please remember that May 22nd (tomorrow) is the deadline for voter registration. Although I try not to be political in this blog, this ONE time I will (I promise, this will not become a habit). After watching many posts, reading some other things, watching the pain and suffering that has been happening to so many people, I do truly hope that the Tories are tossed out on their asses and Labour instated wherever it’s possible. I urge you to consider them, read their manifesto, listen to Corbyn, not just what the media says but what PEOPLE say.

If you don’t know what I’m talking about when I say to listen to people, please check out this blog – From The Many, Not The Few – Real stories from real women about the suffering that’s been inflicted upon them under the Tory administration. This is about more than a single issue, this is about helping to save lives, educate children, having a place to live, to feel safe, to have benefits that you can actually survive on. The Tory administration has caused a lot of pain for a lot of people, and it’s okay if you don’t want to vote Labour but I hope you consider it. If Labour isn’t a viable option in your area, consider voting tactically… but please, for the love of all of my friends and for the love of all of yours, overturn this administration moving forward.

I know this probably wasn’t what you were expecting when you opened this, and I’m only marginally sorry. I feel very strongly that there are injustices being done over there and I have watched it happen to people I love. What wouldn’t you do for people you love?

Again, voter registration deadline is tomorrow, May 22nd. Vote Labour, vote tactically, but please, please vote.

~Brutally Honest Eccentric~

#VoteLabour #ForTheMany #ToriesOut #SaveOurNHS #JC4PM #CutsKill #Labour #LabourManifesto

And just so it shows up when they search it: #torymanifesto

It’s a little harder for us…

Things you stop taking for granted when you have mental illness:

  • Sleeping through the night
  • Showering regularly
  • Getting out of bed
  • Getting dressed
  • Leaving the house
  • Going to parties
  • Finding joy in your own hobbies
  • Talking on the phone
  • Being able to make your own appointments
  • Feeling loved
  • Remembering to eat
  • Caring if you don’t
  • Being mildly annoyed instead of severely agitated
  • Smiling
  • Going an entire day without bursting into tears

There are so many more, but having the attention span to read long lists would be one of mine. I’m not saying that people should consciously appreciate the things that we can’t do and they can, but I wanted to just take a short moment to say, “Hey, we get that this comes easy to you, but it’s really hard for us, and no we’re not just saying that to get attention.”

What’s one thing you used to take for granted that you now have trouble with?

~Brutally Honest Eccentric~

Life after Neurology, or during it

I may have underestimated how much I have going on in my life currently. I said I would be back after my crash, but then Monday I had my neurology appointment and Tuesday was therapy, so they each came with their own downtime.  We’ll get back to my Sunday and my crashiness another time. Right now my high brain pressure is what’s overtaking my thoughts, so I’m going to go there for a bit. My neurologist, Dr. J., is consulting with another doctor, Dr. M, who I may be seeing as well to get his thoughts on my condition and my treatment issues.

I have to, at least temporarily, restart the medication that kills my sex drive as we don’t want this to worsen while we work on finding a treatment plan. The reality is I may have to continue with that medication the rest of my life. Not something I consider with any sort of happiness, but the reality is that between my vision or my sex drive, I would rather keep (both, but if not…) my vision. So, back on the pills I go, and immediately notice another side effect that I hadn’t realized. Yay. Trading pain for misery and pain isn’t high on my list of things to do, but we do what we have to in life.

Dr. M is a neuro-opthalmologist, so basically brain/eye issues, he works mainly across the river but has office hours on this side. I didn’t know whether or not there were any neuro-ops on this side, honestly, which was why I went to the Dr. J in the first place. He works at the same practice as the man that diagnosed me five years go – the one that retired… If you’re looking for a specialized specialist, it feels prudent to get the referral from someone else in the same field.

Explaining my problem to Dr. J. I broke down crying three times, maybe more… it’s a good thing they keep tissues on the desk. I was trying to explain the difficulties in making it to appointments across the river, the fact that although I have gotten past a lot of my agoraphobic issues, I can’t travel alone to the city yet, the difficulties with the side effects, how terrified i was that this was still happening…

I had to stop myself and just explain that I’ve been having a really rough month, that although IIH was plenty reason to be upset, I’m usually more composed in these situations. He’s a nice doctor, he just nodded and said “Well we get through it, right?” Right. So apparently, for my condition there are medication treatments (the other easy one of which I’d already been on for psych reasons and had an adverse reaction), there is putting in a shunt – which is actual brain surgery, and there is a type of eye surgery that I do not know much about nor do I know if that’s even a possibility for me. These are why I need to see Dr. M. … after I get brain scans and follow up with Dr. J.

I am scared. Often IIH (idiopathic intracranial hypertension) will resolve itself. In many patients, it does. For some of us, it doesn’t and then they try harder to find out why – is it a medication, is it something else? We don’t know. So right now my brain is acting like there is a tumor in it, even though there is not (hence the other name for it – pseudotumor cerebri). I am scared… That kind of scared where you just want to curl up in a ball and cry. But I won’t, not yet. I have too many other things to handle. Medications, finding a psychiatrist, discussing blood tests with my GP, grieving the loss of a friend, trying not to isolate myself even though I want nothing to do with people.

I may be preoccupied with my health lately, and my own life situations, but I feel like I have enough going on that it’s a valid way to react. I am used to putting myself aside for others and right now I can’t. The situations going on could land me in the hospital if I’m not careful so I need to put myself first. If others can’t see how this is a healthy way to cope, that’s just not my problem. Luckily, most of my friends, if I don’t respond to their messages, understand that I see and hear them, I just can’t invest myself right now. I have really good, very supportive friends. I am lucky in that while my health may be a problem, my support network is part of my solution.

~Brutally Honest Eccentric~

Ingress, Anxiety and My Plans

Sometimes even when I really want to go out to do something, it still totally freaks me out. My anxiety kicks up in all the wrong ways, even when my excitement is trying so hard to override it. Later this morning, I’m going to go “people.” I’m going out to play Ingress with some friends, and some complete strangers, in a place I don’t know.

I’ve mentioned Ingress before (How I Got Out), it’s the augmented reality game by the creators of Pokemon Go that was the precursor. If you have anxiety issues, I still highly recommend it. Besides handling my agoraphobia, it’s helped with self confidence, making local friends and creates reasons to socialize in both small and large groups. Today should be a slightly larger group than I’ve been with through the winter. It is a cross-faction event, which means both my team and the other team will be playing together and competing together.

My friend Pretty Bit who has helped bring me to many events now, especially the larger ones, will be bringing me to “First Saturday” (on a Sunday) in PA. I’m glad she’s my ride, being with her makes me feel a bit more comfortable going into a situation where there will be many people I don’t know. There will be some I do, but meeting new people can go one of two ways for me. I could feel fine with it and seem a social butterfly the entire time, or I could withdraw and meet people one at a time, head down staring at my screen. Either way, I am determined to go, to have a good time, and likely will pass out when I get home.

No matter which way I outwardly handle this, I know it will take a lot out of me emotionally. I’m good with that though, it’s worth it. I want you to take note note of that… whether you have anxiety or know someone that does… I want you to hold onto the thought that sometimes no matter what you see from the outside, our emotional selves are being used and drained – that feeling I best explained in I can’t always be there for you.. We will need to recharge, whether that’s some time isolating, passing out, reading a book. That time to reclaim our emotional selves is important, especially if you are expecting to “people” again soon.

I will let you know how everything went soon. We can find out if I was a butterfly or a wallflower, or if I won anything (there are contests and a raffle). I suppose when you find out will be a pretty good indicator of how long I needed to crash for. Anyhow, this is me, checking in with my weekend, please feel free to let us in on your weekend plans as well and how you are coping with them.

~Brutally Honest Eccentric~

Invalidation.

Yesterday, I was told that I don’t care about anyone but myself. This wasn’t by some random acquaintance or anonymous internet troll. I got told this by my mother. Last week we got into an argument, yesterday after a week of not speaking, same argument. She was telling me how to handle my doctors. I was telling her that I had it handled.

Any of you with chronic mental illness or chronic pain, you know the multitude of appointments it comes with. You know that sometimes you need to change treatment plans or doctors. I need to change psychiatrists and I am also going to a neurologist on Monday to work on a treatment plan, if possible, for my brain pressure that causes migraines. I’ve had all of this going on for weeks to months. The psychiatric issue has been half handled, the neurology is scheduled. Somehow I was being told that I’m not handling it correctly, that I’m not listening and that – and this one gets me good – I’m going to the wrong doctor for my brain. The reason that last one gets me is that she’s known about this appointment for six weeks.

Sometimes, yes, I do ask for help when it comes to where to go when I am unable to do it myself. This time, however, I had a plan. I had appointments. I hadn’t asked for anything. For some reason, this plan that my mother had been made aware of weeks earlier was not good enough.

This has happened before about a lot of things in life. It’s probably happened to you as well. You make a decision and people support you and back it and then they change their mind. Maybe it’s about a job and your best friend doesn’t think you should quit even though you already put in your notice. Maybe it’s about a guy and your dad doesn’t approve when you get engaged… Whatever it is, all of the sudden it’s as if your choices aren’t good enough. Obviously, being treated this way is going to create disagreements.

Sometimes the change of heart is because of something that is happening or has happened in the other person’s life. It’s okay to change your mind and change your views. It’s not okay to invalidate someone else’s choices because you change your mind though. It’s not fair to either of you. If you want them to hear you, you may need to hear them too.

I work hard to advocate for myself. I work hard to advocate for others. I am assertive when it comes to anyone’s healthcare. I want us to find the professionals we need to get the treatments that are necessary. I have also spent the better part of seven years running peer support on facebook. I have stayed with family to help care for them when they were unable. I have acted as extreme emotional support for people who have been unable to get it professionally. I have shown up on the doorstep of a suicidal friend so they would not be alone. I do these things partly because I can, I have the knowledge and capacity. I do them because it helps me cope with not working. I do them because I love.

So, now, I’ve been treated like I can’t deal with my own medical treatment and told I don’t care about anyone but myself. Honestly, I have been in pain for over a month almost daily. My medication was incorrect due to a differing opinion with a doctor, and a friend of mine has passed away. I don’t really have the emotional capacity to handle the problems of others that I usually do. This doesn’t mean that I don’t care. It simply means that I need to practice self care right now and have boundaries.

I draw the line at anyone invalidating my choices in life, my choices in healthcare and my opinions on how our interactions are going. Why am I telling all of you this? Because people WILL invalidate you in life, and I want you to see that it’s okay to stop letting them. This is me trying to explain to you that it is okay to make your own choices and your decisions ARE good enough.

~Brutally Honest Eccentric~