#chronically fucked

[rebelrose398]

My heart is hurting...

[mycolo-gee]

Fibromyalgia and pots are kicking my ass into the pits of hell, man. I just want grilled cheese ;-;

[unfilteredrealities]

Wait…what??? POTS AND EDS/HEDS ARE COMORBIDITIES???

wtf 😭 why do I still find out more shit I didn’t wanna figure or find out >:((

Like uh I don’t wanna know how chronically fucked up this meat flesh suit that carries a carcass of broken dreams and hopes around is 😩

[iamforevercaptured]

Could someone send me the sleep thing bc my damn insomniac brain lost it, again.

[dropitlikeits-pots]

Doctor Shopping

I want to talk about “doctor shopping” for a minute. The concept of “doctor shopping” is something thrown around a lot in the medical community, particularly if you have one or more chronic illnesses.

A friend of mine had a really awful experience with a doctor the other day. When she sought comfort from a friend of hers, her friend accused her of doctor shopping, saying that she was jumping from doctor to doctor so that nobody ever got to know her case. This made me insanely angry because it’s such a common misconception. Finding the right doctor for your condition and bouncing from doctor from doctor looking for sympathy, pity, and attention are very different things.

I am calling bullshit on the idea that doctor shopping is negative. I am a doctor shopper and I’m not ashamed of that. I don’t do it because it because it’s fun – far from it. I do it because it’s necessary. And if you disagree, I’d like you to hear me out. A general practitioner (or a primary care physician depending on where you live) is not going to cut it for me at this stage, not unless what I need is a simple script. I need specialists. And specialists are expensive. Tell me, why would I continue to pay hundreds of dollars to see a doctor who decided ten minutes into my first appointment that they couldn’t help me? When they have recommended a different doctor, have written a referral and faxed it through, have stated that there is nothing they can do for me – why would I keep going back to them???

Chronic illness is not simple. Especially not when you have a collection of conditions and symptoms that next to nobody knows about. Doctors are afraid to treat me because of how sensitive my body is to medications and how complex my symptoms are. They send me along and do not ask for a follow up appointment. And the chances are, if they don’t want to see me again, I definitely don’t want to see them. So I move on to another doctor in the hopes that they will know a little more than the last one, or will have some insight into what I can do to get symptom relief. My problems are not psychological, they are very real. At this stage, I do not feel like I am living. I feel like I am struggling just to exist and I am being refused treatment in my country because I am not thin enough. Having always had an issue with my weight, this was a particularly difficult thing for me to come to terms with. So I’ve been looking at doctors overseas to see if I might be able to get some more insight into my symptoms and conditions from then, because some of this stuff is more common in the US than it is in Australia.

You can go ahead and call me a doctor shopper. That’s okay. I am a doctor shopper. I refuse to accept substandard care when my illnesses are preventing from living a normal life. Would you honestly return to a doctor that didn’t want to see you? Would you go back someone who dismissed you as “psychotic” because you revealed that you had counselling for a previous traumatic event? Would you keep taking your child back to see someone who made them feel like they were a burden on their family and community? Like they were waste of space or time? I hope you haven’t answered yes because if you did, I can’t imagine what kind of lonely life you lead.

Do not assume you know what is best for someone. If they want your opinion, they’ll ask for it. We deal with a lot of shit, we don’t need your bad attitude on top of it.

[genderfluidvortex]

Anyone else with a migraine at 4am ready to fight someone(your own brain) over this shit. I'm Fucking done with it and about ready to hang myself

[dropitlikeits-pots]

Today my parents have gone to Newcastle to look at investment properties. I was going to go with them and so was Tashi. That was always the plan. I was dressed by 6am. Then my father decided that he didn't want me or the dog coming with them. Rather than letting me learn how to manage obstacles and figure out a way to cope with 3 hours driving there and back, my father chose to list the reasons why I am difficult to travel with. It's only one day. I had already set the back of the car up with things that would help ease my symptoms in the car. I had my bag packed with safe things for me to eat and drink and toys and treats for Tashi because she hasn't been in the car for such a long period since we brought her back from Goulburn at 7 weeks old. I have had a miserable couple of weeks and yesterday's testing was horrible. This was supposed to be a highlight for me. I thought I had managed to figure out a way to go that made me feel a little more like a human and a little less like a burden. As I'm writing this, my father just came in and listed all the reasons I shouldn't be going once more. He keeps leading with "You don't travel well." Yes. Please, rub it in more. Tell me more about how inconvenient it is to have a grown up daughter who can't do regular stuff. And he said that by the way. He said, "It's not convenient to take you the way you are." Mum has promised that we'll go away for a weekend, and I'm trying to figure out a way to tell her that I don't want to go anywhere with my father ever again. He ruins things for me, constantly. He doesn't even let me try to do things, he just tells me that he won't take me or I can't do something. And the reminds me of all the reasons why my illnesses are inconvenient. No need to remind me, I never forget them. Never.

[dropitlikeits-pots]

I want to talk quite urgently about a notion that's been popping up in my groups fairly frequently. More and more, I'm seeing posts about friends and family members not including their chronically ill buddies in conversations about their lives, or abandoning informative conversations altogether. This means that when the chronically ill friend finds out that their friend/family member has been struggling with something, they become upset that they weren't told. I understand that healthy family and friends may be trying to protect us Spoonies, but I assure you, that's not the way it feels. We want to know what's going on with you, what your worries are, etc. We care what happens to you and we want you to talk to us. Let me give you an example.  

A friend of mine recently broke her nose after having a seizure and falling forward. Seizures are not uncommon for her and she has a few symptoms that medical professionals have not been able to diagnose a root cause for. Today, the 7th day after her fall, she started having double vision accompanied by nausea. My immediate feeling was one of concern.

Now pay attention, because here comes the important part:

My concern for my friend's well-being was not diminished by the fact that I experience these symptoms every day.

Don't ever think that someone who is chronically ill is incapable of worrying about you or sympathising with you or showing any form of concern for you. Though we may feel bitter towards the medical community from time to time when we are struggling to get the help we need, this does not mean that our experiences have  left us unable to care. I am constantly worried about my friends. And the majority of my friends have chronic conditions, giving me even more reason to worry about them.

Please don't think because we are "always sick" that you are not allowed to talk to us about your problems. Now and then when I'm having a really bad day I might say "I can't talk about this right now." This doesn't mean I don't care, believe me I do. It means that I am literally unable to give you my full attention because my symptoms are too bad for me to concentrate. I promise you that I will check in with you as soon as I'm able to focus again. I care about you, I want to know what's happening.

I've written before about how isolating chronic illness is. I don't do it to sound like I am all "woe is me". I do it because it’s something that I see so many of the people in my support groups suffering because they feel so isolated. And it isn’t talked about enough publicly. People don’t understand that without their company, we are alone. Company doesn’t necessarily mean that they need to be with us, it could include just a text to check in and ask how we are, if we need anything. I am suffering with superbly bad symptoms today, and have barely moved from my bathroom floor. That does not mean I do not care about my friends. 

I’ve spent my day thinking about them and wishing that I were well enough to be with them and support them. I haven’t said all that much to them (and right now is the best I’ve felt all day because I’ve had some heavy duty medication) but I hope that they know me well enough to know that I am hoping for nothing but the best for them.