You Don't Look Sick

Amy Caitlin Maree. Dysautonomia. POTS. Gastroparesis. EDS III. Chronic Migraines. Chronic Pain. Asthma. #ChronicallyFucked

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havin to fill out a 30 page form about your medical history in order to get an appointment to get diagnosed with an illness you already know you have

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Heads up: This isn't a happy post.

I don't have the energy to talk about the autonomic neurologist appointment in great detail, but so you know, it wasn't great. The gist of it is that she said I won't get better without adequate nutrition and fluids which we knew. There was some scarier stuff but I'm bit ready to get there yet. Today, I woke up feeling broken. I felt like I had to gather all the pieces of myself together before I was ready to try to get up. I was alone with two dogs today and they weren't coexisting very well. I was stressed, sad, and panicked. The feelings I have about this are causing tremendous amounts of panic. I focused on everything but the appointment because every time I thought about it, I got teary and forced myself to stop. I knew that I needed to cry about it, but I wasn't ready to. These days I'm so scared of allowing myself these moments because the last few times I've done that, I couldn't get up for several days. So when my mum came home and asked me why I was so quiet and flat, I told her what I was afraid of. And then I started to cry. I cried and cried and cried. And then I threw up because I'd cried so much. I thought I was finished crying because I'd stopped but I've just cried through writing this so I guess not. The hardest part isn't feeling like this though. It's that no one was around. I love my mum, but she can't watch me cry. It hurts her so much that I can't stand to tell her that I'm a little afraid of crying alone because I wonder if I'll lose control and hurt myself. My friends at this stage are all in the Northern Hemisphere. They were either sleeping or not answering their messages, which I do not hold them responsible for. However, it does bring home how truly alone I am in this battle. I didn't know if I was actually going to survive this episode tonight. I reached out to people I trusted and who I knew would be able to talk to me and help me ground myself. With none of them around, it was difficult for me to pull myself out of the panic enough to breath. I now feel numb. Cold. I am not angry at those who weren't around when I needed them. I am not the centre of their universes and that is absolutely fine because I don't want to be. I am saddened that I can't have them around to help though. They are comforting, most times. But in my current state, I am distraught and don't feel I can talk to them about it. This is not something I know how to deal with.

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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]

The Two Wolves

Many of you will have heard this story before, but I’m going to tell it anyway.

There is an old Cherokee story that I heard many years ago and that has stuck with me ever since. It goes something like this:

One evening, an elderly Cherokee told his grandson about a battle that goes on inside people.

He said, “My son, the battle is between two ‘wolves’ inside us all. One is evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.

The other is good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith.”

The grandson though about it for a minute and then asked his grandfather, “Which wolf wins?”

The old Cherokee simply replied, “The one that you feed.”

The more I think about dementia, the more I feel that this story applies. Whilst we all have the good wolf and the bad wolf inside us, dementia takes away your ability to feed the good wolf and causes you to lose control of your bad wolf. 

When I worked in an aged care facility a couple of years ago, there was a floor devoted to dementia patients. They had to be separate from other patients because many of them were aggressive. Sometimes it was verbal aggression, but for those who had suffered dementia the longest, it was always physical aggression. They had lucid moments too though. There was a gentleman in one room who had tried to urinate on me and hit me when we came to shower him in the morning. When I brought him his breakfast in the common room about twenty minutes later, he held my hand and told me I was a beautiful and kind young woman. They have no control over their anger, or over their emotions and behaviour in general. 

Yesterday, my mum and I spent most of the day with my grandma. We listened to her stories and complaints of what had happened that week, we diffused her meltdowns over my uncle not doing enough for her (he actually does more than he used to) by going to do her grocery shopping for her and getting keys cut. On the key thing for a second - she got really panicky earlier in the week and had all the locks on the doors into her house changed. When she asked the locksmith for thirteen keys and he said he could only give her six, she lost her temper at him. This is not the grandma I know, She is no longer rational. So yesterday we went out and had those other seven keys cut for her. I thought it would be nice to get her something different for lunch and we got her a bento box from a Japanese place that she’d eaten at before and loved. When we got back to her house, I set her up for lunch, and she told me she didn’t want it. 

“Okay, that’s fine grandma, what do you feel like?”

“Nothing.”

“Come on, if you could eat anything at all right now, what would it be?”

“*silence* *more silence* Lamb chops.”

So, I made lamb chops with vegetables - steamed, not roasted because that suggestion caused a bag of peas to be thrown across the kitchen. My mum took the dog for a walk. Honestly, that was the longest walk that dog has ever been on. By the time they got back, grandma was about halfway through her meal and I was barely keeping my shit together. It was getting dark and that made me nervous because our drive home is no longer well lit and it triggers my eye spasms. Mum decided that this moment (at 6:30pm) was her window to bring up the possibility of grandma moving. To be honest, I knew that she would be resistant. We all knew that. But I never could have imagined that my grandma would be so hurtful in her reaction.

Mum had said, “I’ve been worrying about you. I was wondering if it might be a good idea for you to move up with us? There are-”

That’s as far as she got. My grandma cut her off and started talking about how she would be going out of this house in a box and if she moved closer to us then she would probably die. This is not new. We’ve heard this. My mum picked grandma’s plate up and took it to the kitchen to save any of us from having food thrown in our faces (has happened before). At this point my grandma said, “You’re not suggesting this to help me, you’re thinking about your needs and not about mine. You’re not worried about me, you just want to make it easier for you!”

I heard a dish drop in the sink and I knew that this had hurt mum deeply. I looked at my grandma, a stranger to me now, and I told her that wasn’t true. I told her that mum worries about her all the time, that she wouldn’t be suggesting the move if she didn’t care. I wanted to shout at her to take it back, but I couldn’t. Her bad wolf is taking over. Mum came in with tears down her face and she looked at my grandma. She couldn’t even speak properly, it came out like a whimper. “How could you say that?” It broke me. Grandma said some other stuff but mum and I just sat there and eventually mum said “Fine, I won’t bring it up, I won’t ask you to move ever again.” A few minutes later, we left. 

My mum, who is so strong for me every single day, cried the entire way home. I talked to her about this Good Wolf/Bad Wolf story and how I felt it related to dementia. I told her that while grandma might have meant what she said, she’s only seeing it that way because her Bad Wolf is in charge. We talked about some seriously personal stuff. I told her that if grandma wanted to be mad or upset at anyone for us being further away, then she could direct that anger at me. I urged mum not to believe what her own mother had said - she is not putting her needs above those of others. We are in this situation because my dear mama put MY needs above hers. Living here means that she has to travel further to work, to see grandma, to visit her friends. She is no longer in the place she grew up in. She moved out of her comfort zone and is putting herself under immense stress because of her love for me. I cried at this point too. Not because I am feeling self-pity or guilt, but because I was angry.

 I was so angry that this monster called dementia has taken my sweet, kind grandmother away from us and left us with the echo of her that hurls hurtful words across the room like they are nothing. I am still angry. I cannot be angry at her because she has no control, but I am still angry. Of course I do feel a little guilty for being the cause of all this, but it is not an all-consuming guilt and I can live with that. I am feeling less angry and guilty than I was last night, even with no sleep.

I am working on feeding my Good Wolf today. My puppy is sleeping on my lap and when she wakes, I’ll bathe her. Not fun for her, but productive and being with water makes me feel good. I donated to some organisations that are important to me earlier today and that made me feel good, even if the donations were small. I also registered mum and myself for our importer’s warehouse sale that we used to love going to. I told her that I wasn’t well enough to go this year and while she didn’t say it, she looked very disappointed. She didn’t want to go alone so she told me it was okay. I feel that I can push through the day to give her some joy, even though I know I will hurt later. I was raised by a woman who consistently puts the needs of others before her own and now wonders, “Who will put me first?”

Easy, mama. I will.

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Dementia

It is a word that sends fear into the hearts and minds of most, and tears to the eyes of those that have experienced it. It is horrible and damaging, and there is no cure. 

For those who don’t know, my grandmother is suffering from dementia. She is 88 years old and lives in her home, just her and her dog. Over the last 12-18 months, we have used the phrase “her mind is winding down” to describe how she is coping with day to day life. Earlier this year, she hurt her back bending down to feed the dog and her pain was so great that she needed to go to hospital. From the hospital, she was sent to a rehabilitation facility that was close to home. She was furious about it. I believe I talked about it a little here, how she was so mad that she shouted at me to get out of the room. She was there for one week and we saw her every day. Mum and I traveled between grandma’s house and the rehab facility every day because every day she told us that she needed something. Except that she didn’t say it like that. She would say “Oh well nobody’s even thought to bring me *insert trivial item like a pen or a comb here* so I suppose you don’t want me to have anything.” The same thing, every day. And then she couldn’t remember who had been to see her in the morning (as far as OT, physios, dietitian). It was around this time that I started to feel seriously concerned about what would happen when she went home. 

As you know, I am chronically ill and know a fair bit about the medical community. My history and the study that I have done both in nursing courses and outside of it has allowed me to understand how things work and to know what the abbreviations and everything mean. My particular area of experience is aged care. Despite not being well enough to work or attend university, I offered to take over management of grandma’s care. This is strictly a family matter and there is no physical responsibility so I felt like I could do it. All it means is that I spend half my life on the phone to the DVA, home nursing, cleaners, doctors, and therapists. And then I call grandma because she needs to know who is coming to see her and when. I set everything up so that it was permanent. I can change her level of care any time, but to keep her happy, she also has control. She can cancel her nurses or cleaners if she doesn’t want them or she can change the time they come, or how often they come. But by law, they are required to inform me. This isn’t as stressful as it was towards the beginning because we have everything set up and grandma now has a bit of a routine. 

However, she has been losing weight again in recent weeks and is becoming more verbally aggressive and argumentative. We now live an extra 20 kilometers away from her and it has been stressful for my mum to visit her regularly because the travelling takes up time. Grandma’s need for regular visits and care is increasing each week and we have been concerned about her living alone, especially as she had an accident and now has another wound on her leg. Yesterday, mum and I went to visit her and tried to broach the subject of having grandma move closer to us, to an independent care facility or a housing development. Read my next post, “The Two Wolves” to learn more.

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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. 

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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.

[dropitlikeits-pots]

The New Chapter

When I last wrote, I was in a deeply depressive state and just about to leave my home of 17 years. It feels like that was an age ago, but it was really only a few weeks. Since then, I have gotten a little better. Our new house does not quite feel like home at the moment, but slowly things are happening that make it more ours. The majority of our furniture has been ordered and just today we had our television connected (finally), a new heater installed (warmth!!), and my rocker arrived. My bed has been the greatest thing, aside from the fact that the amount of space in this house allows me to use my wheelchair when I need it. The new bed is memory foam and has helped a lot with my dislocations and subluxations. It has also helped with my generalised pain as I no longer have springs sticking into my body as I try to sleep. I still suffer from painsomnia and still have four or five eye spasm episodes each night, but the comfortable bed certainly helps me otherwise. 

I saw my gastroenterologist a couple of weeks ago too. That was a bad appointment... It was bad enough that I cried through it and but held off the complete meltdown until we left. Then I collapsed and sobbed before having to go get blood drawn. The gastro refused to consider any intervention and upon hearing that I’m managing my nausea with marijuana (despite the fact that it’s making me miserable), told me to “suck it up” and use the marijuana twice a day if it would make me eat. It doesn’t guarantee that the food will stay down. Just that I can eat it. She also wants me to see a psychiatrist and go back to the awful gastro who told me my inability to drink water was a psychological issue. She also wants me to go back to see her in July. Mum says I have to but at this point, I don’t want to see anymore doctors because quite obviously they can’t do anything and I’ve already been referred in a circle. Now it seems that I’m going to be referred back in the other direction. 

In the meantime, Tashi Anna has been bitten by a mouse spider, had diarrhoea for ten days, and needed a heavy duty course of antibiotics. She’s doing much better now and is back to her normal cheeky self. A lady in our street comes and takes her for a walk five days a week which has been a massive help. I’m not pushing myself to take her out when I don’t feel like I can do it. And I don’t feel bad if she doesn’t go because I know that she gets a walk almost every other day. Mum and I walk her on weekends and she likes to run in the yard, even though it’s not as big as she’s used to. She’s been helping me a lot more at night and comes to lay on my chest when I start having a panic attack without me having to tell her. So that’s a plus. 

I made it out to the zoo with mum and her friend’s daughter this last week though. I spent the day in my wheelchair which allowed me to get the whole way through, but it definitely knocked me around. And then of course I hit my foot on a chair on Saturday which cause the skin on my toe to split (I have no idea how), cut myself shaving my legs so more blood loss and poor healing, and sliced my finger open on a clip lid crate that I was lifting. It was empty, but apparently very sharp. Not much else to report, other than that I’m thinking about a trip to LA next March to learn from some more doctors. I will start saving but won’t make my decision until around October. Hopefully by that point I will have a better idea of where I am and will have seen the Neurologist that knows about dysautonomia. 

That’s all for now, I guess!

[dropitlikeits-pots]

Childhood Memories

Yesterday I felt so anxious and depressed that I just had to clean. The depression is part of the exhausted feeling. When I am overtired, I get into a depressive state. Even when I was little this was the case. And cleaning used to help me manage that feeling. The problem now is that my body suffers if I clean. I react to chemicals very badly and become tired easily but yesterday I pushed through. I cleaned for over five hours. I scrubbed my desk and drawers and baskets and walls until my hands were red and wrinkled and my wrists were popping out of place. Then I put a splint on my worst wrist and cleaned out the fridge and freezer. I pushed through so much that by 6pm I couldn’t walk. I was crawling on my knees and elbows and whimpering in pain. I hadn’t eaten since Monday afternoon. Mum was upset when she saw me but not nearly as upset as I was. See, when I scrubbed the underside of my desk, I realised that I hadn’t been under there since 2003. In 2003 I was bullied quite severely by my whole grade at school. I told no one until the school year was almost over. It left me raw and over emotional so it was easy for either of my parents or my brother to upset me at home. When I got upset, I would drag the pillows and blankets off my bed and lay down under my desk and doodle. I drew little pictures about what I wished my world looked liked. Seeing them yesterday, I realised something that broke me. These doodles were my biggest dreams at that point in my life. The biggest thing that Little Amy could ever dream up was the idea of having friends. I cried. I sobbed so much. Because the thing is, I’m here 14 years later, and I am lonely. I am so lonely. I am less lonely now than I was in December last year, just before we got my puppy. She became part of our family to keep me company. And she does a good job. Unfortunately, she is not human. She cannot hug me or talk to me, or help me when I need a hand. She is faithful and loves me and is a lovely companion. But she doesn’t stop me feeling lonely. Seeing all those “big dream” doodles yesterday brought all those feelings back. And all the words that were said to me. How even now, I struggle to keep myself from believing what was said to me. Those feelings are still with me today and I have had a hard time being human. I am grateful for the friends that I do have, I acknowledge that they are few in number. I can think truthfully of four friends. Only one of whom lives in Australia. And even she is going on exchange later this year which will put all my beautiful sources of love and light and guidance on the other side of the world. While one of my friends is coming home to visit her family in September, I do not expect to see her much. She is hoping to bring her boyfriend here and I know she would prefer to spend her time adventuring with him than at home me. And then she will be gone and I will again be on my own. This isn’t to make my existing friends feel bad, I appreciate them chatting with me more than I can express. What it is supposed to do is tell people how isolating chronic illness is. I am not the only one who feels this way, I know that. But it’s astounding how many friends fall out of your life when you’re sick. People still make promises to you and eventually you just stop believing that they’ll turn up at all. So to sit under my desk and feel those same feelings I did when I doodled those pictures, it was a lot. I had nightmares all last night, along with blood sugar crashes and a few vomiting incidents. Today I am too tired. I am deeply sad. I am angry with the world and with myself. The only thing I can think of to smile about right now is that my puppy is chasing her own tail and growling at it.

I hope to have some good news to share with you soon. I don’t like feeling like this.

[dropitlikeits-pots]

Tilt Table Test

Tuesday was one of the worst medical experiences of my life. My cardiologist (who I only went to see because my gastroenterologist faxed over a referral and insisted that I go) wanted me to have another Tilt Table Test. TTT NUMBER 3! I agreed because I’m in this period of doing what the doctors tell me to do to see if this gets me what I want faster than arguing with them. It also saves me time arguing with other doctors when they ask for Australian results only. Honestly, it’s the same equipment and the same method worldwide. It measures the same thing. It gives you the same results.

Anyway, the test was awful. Some time into it, my right arm started having those weird spasms that it does. I told the registrar (who didn’t seem to understand what autonomic dysfunction actually meant) that it was happening because I was concerned that it might effect the results of the test. She told me that everything on their end looked fine and that I should just calm down. So then I had to explain that these episodes are not accompanied by anxiety. I did not mention that my eye episodes come with a panic attack because I already knew that she wasn’t someone who can understand that. And I was explaining that I wasn’t anxious but she just kept saying “Calm down.”

These episodes usually last between 20-30 minutes so some time later when my arm stopped shaking, the whole room turned on its side. I had no idea what was happening and was panicking. This was not a panic attack. And I also don’t believe it was an abnormal response. I panic when I lose control of my vision. It triggers my fight or flight response and that turns into an anxiety attack the longer that feeling continues. But as I said, this was not an anxiety attack. I cried a little because I was frightened. I had to look up at the ceiling and my nausea had flared up so badly I had to get the tech to get my emesis bag from my backpack. The registrar continued to tell me to calm down and then asked me if I’d seen anybody for anxiety. I told her I’ve seen everybody. And I wasn’t exaggerating. As she continued to demonstrate her inability to understand my conditions, she pushed and pushed, telling me I needed to see this doctor or that doctor. And I would respond “oh yes I’ve seen five of those. And yes, three of those ones. Ohh I see that one every week.” She was quite clearly neither familiar nor comfortable with chronic illness. With the room on an angle and me feeling like I was either going to pass out or puke, the last thing I needed was someone telling me that they couldn’t see any reason for my symptoms except a fast heart rate. Oh yeah. No shit. What had I been saying the entire time? “This a neurological issue with primary gastrointestinal symptoms. It is not a cardiac problem.” My POTS is not severe. My autonomic nervous system however, is so out of whack that it is causing all my other symptoms. I knew that already. This was not news to me or my mum (who came in unannounced towards the end of the test - to my delight and the registrar's annoyance). By this point mum was rolling her eyes and looked at me and said “What a fantastic waste of an hour.”

We escaped and mum told me that during my test, she had gone up to neurology to find out more about the only neurologist in Australia who understands my conditions. Also to demand to know why I was deemed “not sick enough” to see her TWICE - once last year and once just this past week on Friday. And why I had been shouted at over the phone by the secretary. My mum says the whole lot of them are a bunch of assholes. They refused to talk to her and told her that if the doctor thought I was worthy of her time (yes, you read that right. “Worthy” 🙄) then she would have called to make an appointment. As far as I am concerned, the whole lot of them can shove their opinions up their rear ends. I was exhausted by the time we got back. And I made it much worse the next day.

[dropitlikeits-pots]

I wrote this on Thursday but didn't have the energy to post it after I'd finished.

The last couple of weeks have not been easy. Things have happened that caused my body to fight against me more than usual and it has been a constant battle. Last night, I found myself giving in to the demons that accompany chronic illness and this morning they won. The key sign that I am struggling with everyday life is withdrawal. I remove myself from situations to avoid having to talk about anything, and also to avoid losing people that are close to me. This often backfires, but I find it infinitely better than the alternative. On the rare occasions that I don't withdraw, I have ended up hurting people I care about. I say and do things that I would never normally say or do and that I definitely don't mean. It causes irreparable damage to the relationship. I have very few true friends left. I can count them on one hand and not use all my fingers. For this reason, my friends are more valuable to me than my own health. They are what keeps me going. Having said that, they need to know that if they were to try to get to me while I was in one of these funks, it would make everything much worse. Although it's probably true that in these moments I need my friends more than ever, I am actively choosing not to associate with them. I believe that this is the best decision generally and I am afraid that forced contact would destroy the bond that we have. Today, I muted my friends on social media to make sure I didn't feel any urge to reply or contact them. This allowed me to have space for most of the day and I could work on calming down and bringing myself to a place where I could contact them in a rational frame of mind. And that was just today.

Last week, my grandma went into our local public hospital on Monday with severe back pain that she described as being worse than childbirth and gallstones. The public hospital transferred her to a private hospital for rehabilitation. She did not go quietly. The sudden change of plan made her furious and she took it out on the rest of us. She is starting to get dementia which is a difficult concept to deal with on its own, without the fact that her strongest sign is unprovoked aggression. My sweet, shy grandmother was suddenly snapping at doctors and nurses. And at me. When we went to see her the first night she was in, she told me to leave. I stood in the hallway outside her room and cried. When she eventually let me come in, she told me that she'd never forgive any of us for her having to be there. Even though we didn't admit her and didn't know that that's where the hospital would send her. She was like that the whole week she was in there. We were rushing back and forth trying to get her everything she wanted and needed and none of it was good enough. She was allowed to come home this past Monday (April 10th) and my dad and collected her. Getting her from the hospital and settled back home took three hours. Three hours where I was being snapped at by her while trying to make phone calls to sort out her home care nurses, cleaners, and pharmacy orders for a supplement that she desperately needs. She actually told me that I was being just like everyone else and ought to leave her house immediately. My grandma and I have always understood each other and I have always been able to calm her down and explain things to her which makes her unravelling mind very hard to deal with. I have spent most of this week on the phone with people on grandma's behalf. She receives home care nursing three days a week now and is not doing as well as we had hoped. She is resisting our efforts to change her routine to make it easy to manage her blood sugars (she is a Type 2 diabetic) and help her gain weight. She started off so well and even apologised for shouting at me, telling me she'd really try and stick to the new guidelines we needed her to follow. She feeds her dog three times a day. It's as simple as eating at the same time her dog does, and she still refuses to do it. I am afraid and frustrated and I feel like I am wasting my time organising all this help for her when she won't even try.

During this ordeal, I have been battling with my own emotional demon. My birth mother did not collect the letter that was sent to her on my behalf. This was the third letter and there had been no response. The post office attempted a reminder three times before sending the letter back. This effectively puts a stop to any communication I might have hoped to have with her. I am now trying to compose a message to her daughter (my birth sister) in the hopes of initiating contact so I may receive some answers to my questions. These questions are now medically urgent. If my illnesses are genetic, it will change the treatments that I can receive and will make it easier for me to get in to see a geneticist. At the moment they are refusing to see me because I have no family history. That hurt.

With my body refusing to accept solids at all and purées starting to make me sicker every day, I have no energy. I have been having horrible low blood sugars in the middle of the night that are becoming increasingly difficult to manage. My gastroenterologist has put me on a medication that I have tried twice in the past, both times with awful side effects. This time has been no different. My fatigue is much worse. After taking the medication and during the morning after "hangover" period, I am told that I cannot remember my own name, where I am, or control my bodily functions. It's frightening.

With all of this going on, I have not been coping. Muting my friends and removing myself from their reach is one of the only things that makes me feel like I'm doing something right. My dear friends know who they are and if any of you are reading this, I am so sorry. You have no idea how sorry I am that I cannot control myself enough to be trusted not to hurt you in these moments. When I don't talk to you, it is not because I do not love you. It's because I don't want to lose you. It makes little sense, I know, but it's the way I am.

EDIT April 17th: I am feeling a little better, still have my dear friends muted but not for much longer I promise. I stopped the medication on Saturday and I am starting to feel a bit more like myself and have started to regain a bit more control. Grandma is still difficult.

[dropitlikeits-pots]

Moving with Chronic Illness Pt 1

So as I’ve mentioned, we are moving house. When we signed the contracts for the new house on Tuesday the 21st of February, I was very aware that this was not going to be an easy process. My mum had a trip away planned for the following week, which would be the week where we needed to work hardest to get our house ready for. She left on the 25th, to return on the 4th - the same day as our first “Open for Inspection”. That week was hell. I pushed myself through it, cleaning things out and packing boxes. That was from the moment we signed the contracts. So really, it was two weeks of hell. But everything got down, the house looked as presentable as I could make it look and our house went on the market successfully on the 4th of March. 

Since then, we’ve had regular open houses on Wednesdays and Saturdays, and all our stress levels have been incredibly high. We don’t have as many interested buyers as we had hoped for and we are getting nervous about meeting our goal price which would enable us to fix up the new house to make it as safe as possible for me, and also to be mortgage free. Our real estate agent thought he would be able to get us the amount we wanted but he is now unsure (which honestly pisses me off quite a lot). As it is, there is little left to do but to sit and wait. We are hoping to sell before auction, but our auction is this coming Saturday (the 25th of March) so I don’t know how likely it is. I am exhausted and my health is suffering under the stress. I will be very glad when this process is over!

[dropitlikeits-pots]

Expansion on Micro Update

Okay, so here is the rundown. Christmas was small last year and I enjoyed it. Particularly because on the 19th of December, we brought home my brand new 7 week old puppy! Here she is on the first day:

Her name is Tashi Anna and she is now 4 months old. She’s growing well and is very smart but also very cheeky. She is 75% Toy Poodle and 25% Pomeranian. She was desexed last Thursday so she’s a bit sore at the moment and I am struggling to keep her quiet. Still, she is wonderful company for me and is adapting to her life as an emotional support animal very well.

My health is not so good. I can no longer eat solids without some form of backlash from my body so I am on pureed foods and mostly liquids. I can no longer drink water as it makes me throw up immediately and I have been having trouble keeping myself fully hydrated since February last year. I saw a gastroenterologist on Thursday who told me I needed to see a psychiatrist because she believes I have psychological issues. Both mum and I were unamused by this. I will not be seeing her again.  After that horrific incident, I decided I need to do more EMDR to help with my reactions when doctors say this to me. I wasn’t able to stick up for myself because I was too busy trying not to cry. This will be addressed in the coming weeks. I also saw an acupuncturist on Thursday who has given me some hope that he will be able to balance my body to give me more energy. I will continue seeing him once a week for a couple of months and reassess the effectiveness of the treatment at that time. On Tuesday I have an appointment with a gynaecologist to investigate PCOS and Endometriosis, and to discuss a more suitable birth control (I’m now on a 3 month pill to lessen the impact of my periods on my health and I am still having breakthrough bleeding). Hopefully this goes well and I will have a few more answers and things to try.  I will update here as things occur. Or I’ll try to, at least.

The break that I intended to have did not go to plan. I wanted to give myself time out but I definitely went about it the wrong way. It didn’t click in my brain that taking a break form medical professionals is fruitless when I can’t take a break from chronic illness. There’s no break from the way my body is at the moment and no amount of time away from appointments is going to change that. So although I had time off from doctors, it didn’t really feel like a break at all. Especially with my hospital trips for fluids and antiemetics and GP trips for medication scripts. I am fighting everyone at the moment to try and get IV fluids at home but I think I will have to go to my Integrative GP in Gosford to get an idea of how to make it happen. She seems to be the only person (medically speaking) who is open to other treatment options and who might know a way of getting me what I need. This trip will have to wait until after the house is sold, possibly until after we move. 

And that brings me to the big thing - MOVING. I will write a whole other post in just a minute about this process (that’s still happening) but I will mention here that we went to the house on Thursday evening and every time we go back, I just love it more and more. 

Be well!

A xxx

[dropitlikeits-pots]

I stood at my desk this morning, looking out my window as my mother lectured me from the kitchen about my negativity. This negativity that she was referring to is me saying “no” when a new treatment or doctor is suggested. This isn’t something I say for fun. I have usually thought about it in the past and come to the conclusion that it’s not for me or isn’t something I’d like to try. My mother has been reminding me quite frequently that I am ruining her and my father’s lives. I’m not enjoying this and I don’t know what I can do about it. Sometimes I say no to something because of a gut feeling. Sometimes it’s because I’m scared. This morning, this has all come about because she made an appointment for me after I had specifically told her I did not want to see that doctor on that day. 

As I looked out my window and listened to my mother berating me for being the bane of her existence, it occurred to me that how I was feeling was how I felt almost two years ago when I tried to jump out of that same window. I did not want to be a burden, I did not want to be the reason my mother did things she didn’t want to do, I did not want to be the cause of her stress or the thing holding her back. This all feels strangely amplified as I realise that the reason for packing up and moving this time is me. Me and my safety. 

With my birthday coming next Wednesday and this appointment (along with several others) all falling the day after, I can’t help but feel anxious. My mother already displayed this morning that she doesn’t understand how being driven from appointment to appointment could possibly wear me out. But it does. Getting out of bed can be enough to wear me out and stress and anxiety (along with a few other emotions) are eating through my “spoons” rapidly. With my emotions all over the place and my window of tolerance being exceptionally small, I barely have the energy or the willpower to keep my eyes open. My mother is tired of me ruining her life. I understand that. I never meant for that to happen. I think about it all the time. But I am tired too. I am tired of being the cause for unwanted change, I am tired of treatments not working, of doctors not believing me, of having to explain to people that why I can look well and feel awful. And sometimes I am tired of fighting. 

I was supposed to have a “doctor holiday” for the last three months, but somehow, all my mother has talked about was new doctors, new treatments, new this, new that. She has been making appointments and printing things and leaving them on my desk for me to look at. I have filed them. She gets angry because she thinks I am being negative or lazy. But really, I just want a break. It’s hard to have a break from doctors when your body isn’t working properly on it’s own, and I realise that it was not realistic for me to want a break from talking about anything to do with my illnesses. But sometimes I feel like she wasn’t even trying to give me a break from it. It’s been three months and I don’t feel like I’ve had a break at all. The “holiday” is supposed to end after my birthday. My mother took this literally and made appointments for the day after my birthday from 8:30am onwards. She thinks my “negativity” comes from the support groups I am part of, but she doesn’t understand it. I don’t know how to make her understand it. Part of me thinks it would be better if I behaved like a wounded animal and went off to find somewhere to die quietly. It seems at this point that she would be relieved not to have such a burden in her life.

[dropitlikeits-pots]

A Micro Update

It’s been quite some time since I’ve written here, but a big update is on it’s way! The basic update is:

We survived Christmas!

It’s 2017 and we got off to a very rocky start.

We welcomed a new member to our family in the form of a puppy!!

I’ve been having a break from medical professionals and my body disagrees with my decision.

WE ARE MOVING.

The next update will cover all of these except the last one. Expect a series of posts about what it’s like to move house and prepare the old one for sale all whilst battling your own body. Fun!

Hope you’re well!

A xxx

[dropitlikeits-pots]

The rundown for October (Part Two)

Continuing on in my update for this month, here’s Part Two (see Part One here): 

 While my family all went out to my cousin’s wedding, I spent the night on my couch, crying. Not for the first time, I was berating myself for not being well enough to go somewhere. For not being well enough to get myself dressed, to eat, to drink… I cried because the people I went to high school with all have lives. They have jobs, they’re studying, they’re planning trips away, they’re moving out of home. Their lives are moving forward and I’m stuck here. I have trouble getting myself up in the morning, how am I supposed to work or study or have a relationship? I bundled myself under my blankets and cried myself to sleep. The following day, my best friend came over and was kind enough to take me up to get blood drawn. It did not go well. The woman who was trying to take my blood clearly didn’t speak English well and missed my vein. When she tried again, she wiggled the needle in my arm and pinched a nerve. I cried in pain and told her to take it out. She brought someone else in (who found a vein then asked her to feel “what a good vein feels like”) and I told her that if she wasn’t sure she could get a vein, then I was going to leave. She wasn’t sure she could, so I left. I had a panic attack outside the centre and cried into my friend’s arms. I had such excruciating pain in my left arm, that I couldn’t use it properly for two weeks. 

 The cycle of not being able to keep solids, purees, and fluids down started again, I had fevers and chills, and I started fainting more frequently. I was dehydrated and exhausted and all around felt like I was dying. By the morning of Tuesday the 18th, I was in hospital. Mum and I spent the entire day trying to explain to doctors what my medical problems are. As usual, they didn’t really understand. They did get me hooked up to fluids and administered IV anti-emetics which worked really well. I didn’t want to stay overnight, but apparently it was necessary. They gave me laxatives to clear out my bowel and kept me on fluids the whole time I was there. By the time they unhooked me the following morning, I’d had four litres of IV saline. My family was so wonderful. Mum stayed with me all of Tuesday and then my brother came over in the evening. We watched a movie on his laptop and he helped me get to the bathroom and then put me back into bed before he left after the end of visiting hours. Dad called several times to check in on me and had planned to come around in the afternoon the following day, but in the morning the doctor told me they couldn’t do anything else for me and would be sending me home. This is never something I like hearing, especially when I don’t feel like that I’ve been heard by the doctor who’s making those decisions. This one in particular wouldn’t listen when I told him that the drug he wanted to put me on (again) no longer worked for me, or that my nausea was so horrible without the IV anti-emetics that I wasn’t going to be able drink enough to keep myself hydrated. He ignored me completely and told me that I would taking the medication and would be drinking normally. My mum’s friend came to see me and was kind enough to bring me home. I had never been so relieved to be back in my own bed. I rested a little and felt much better. The next few days were wonderful. I was able to move freely, I was less dizzy, and I had very little brain fog. The nausea was there and making it difficult for me eat and drink again, but I was trying. 

 I saw my diagnosing doctor in Gosford on the Thursday to have my disability application forms filled out. It went well enough but was quite confronting to see all my symptoms lined up and fleshed out like that. I was glad that she was willing to complete the forms in such detail and help me sort through all the documentation that we have. I gradually started to drink less and less, and eating became difficult again. After pushing myself through several social engagements, and a few very unhelpful medical appointments (one of them was the cardiologist appointment that I talk about here), I could feel a major crash coming on. Mum threatened me with hospital if I didn’t keep my fluids up and I spent the weekend struggling to drink while I attempted to finish Halloween costumes. Every year my best friend and I get together and dress up, take photos, curl up on the couch for a movie marathon, and eventually sink into sugar comas. There was no way that I was going to miss this Halloween, health be damned. 

 So here we are. The very first day of November and I am almost positive that I should be back in hospital. I pushed through yesterday because I wanted to have fun and be as normal as I could for a few hours. I crashed really badly today and have had a lot of difficulty drinking. I’m not throwing up yet though, so I don’t want to go to the ER now. Mum and I had a phone appointment with the doctor from Gosford and possibly have a good lead on a new treatment that might help make my symptoms more manageable. Tomorrow I will rest, the on Thursday I have counselling. I think I need that more than all the medical appointments I had through October.

[dropitlikeits-pots]

The rundown for October (Part One)

This post is an update of my health for this month and it is going to be lengthy. I am going to split it into a few posts to break it down a little. This here is Part One under the cut.

 It’s been a particularly bad month in my world. I have spent the last few weeks getting progressively worse. A few weeks ago I had a bad spell with nausea and vomiting. It was just after a night out celebrating my best friend's birthday (no alcohol as I'm definitely not that brave) and I was already feeling fairly weak. I spent the next day trying my best to keep myself moving and active but at dinner that night, I told my mum that I felt a crash coming. I was very, very right. The following day, Monday the 26th of September, I couldn't get out of bed. I could barely lift my head up and I was vomiting. Both parents were at work and I spent most of my morning in the bathroom floor. I was no longer keeping down fluids. Eventually it stopped and I went back to bed, where I stayed for several days afterwards. I will add here that a dear friend if mum's was going overseas and had left her dog with us to give me company. I was not well enough to have a dog relying on me to walk him and feed him. However, nobody knew this at the time and it was just an unfortunate circumstance that stressed me out. 

 I dragged myself out of bed on Thursday the 29th to see my functional neurologist. This was a bad session. One of the worst. I was already exhausted when we arrived and I did not want to be there. I had pretty much already made up my mind that I did not want to be coming back to see him again as the exercises he had given me had made no difference. I have seen him about ten times now over the last seven months or so, and I have done everything that he has asked me to do. He has given me a plethora of exercises and some days it seemed that I was doing nothing BUT the tasks he had given me. I talked very little about it and did not complain because I knew that if it worked, it would be worth the effort and hours put in. But here I am, no better (actually quite a bit worse) than when I first started seeing him. What made this session particularly bad, was that he did all the things he could do that would trigger a spasm with my eyes, thus forcing my anxiety to skyrocket. I started to cry and eventually after some particularly painful exercises, I had to sit on a chair and wrap my arms around myself, physically holding myself together. That was the end of the session. He suggested we call in a month to let him know how I was going with the new tasks he set me. I excused myself to the bathroom and immediately had an anxiety attack. Eventually, I pulled myself together and mum came in to check on me. She led me out of the building and told me we didn't have to come back, that we were done with this. We tried, it didn't work, and that it was okay. I cried some more and got us something to eat. By this point, I was more exhausted than before and I had a splitting headache from crying. I'll say here that it was around this time that my fluid intake started to reduce. 

There was as drama that evening that sent my anxiety right up again and by the time we got home again I was so fed up that I took pain meds for my headache and went straight to bed. I should have stayed in bed to rest the following day, but I was stupid and went out to the mall to pick up a few final ingredients for my grandma's birthday ice cream cake. I threw up and passed out before I left that morning and still went anyway. I had to sit for 45 minutes in the middle of a grocery store because I was so dizzy I thought I was either going to throw up or blackout. Or both. When I eventually got home, I pushed myself further by finishing the cake. I threw up everything I ate that night and pulled myself out of bed on the Saturday to put the final touches on the cake and get myself cleaned up. I was refusing food because I was feeling so nauseous so mum made me soup and a piece of steak and made me eat it before we left for grandma's. I was not feeling good. I had ice cream cake with the family because grandma looked upset when I said I didn't want any and about half an hour later, I ran to the bathroom and threw up. We went home and mum put me straight to bed. 

 The following day was my grandma's actual birthday, October 2nd, and we were taking her to see My Fair Lady at the Opera House. I haven't been very good in theatres lately, as the darkness triggers my eye episodes, but this was something I couldn't bare to miss. Although I had several episodes during the performance and it was exhausting for me, I was so happy that I went. It was amazing and such a wonderful, beautiful experience to share with my mum and grandma. The next day, however, I couldn't move. I could barely keep my eyes open. I was lucky that it was a public holiday so that mum could make sure I got to the bathroom and could feed me because I was not handling things well in my own. I started to throw up foods again, but purees and liquids were staying down. 

The Tuesday was my appointment with my gastroenterologist - my final appointment with this particular doctor, as she fired us shortly afterwards. This was not a productive appointment, it was only to go over the results of the studies she had ordered. By this point we all knew that there was nothing more she could do for me and that she was out of her comfort zone. But I feel that all doctors are out of their comfort zone when it comes to this condition. They don't know it and they don't seem to want to know it. As I’ve mentioned in an earlier post, I’ve joked that nobody wants to board a sinking ship, and as far as these doctors were concerned, I have "RMS. TITANIC" stamped across my butt. 

 The following day was my cousin's wedding. I wanted to go, I had a lovely new dress (that I still haven't worn) and I was excited to see my cousin who had come from England with her three children whom I haven't met. I woke up on the Wednesday and didn't think I'd be able to go, but I pushed that thought aside and decided I'd wash my hair, just in case I suddenly felt well enough to go out. I figured I'd have a bath a as we'd just bought this new attachment that would enable me to wash my hair whilst sitting in the bathtub. I got myself in and then all hell broke loose. It was quite the battle. Having failed miserably at getting the attachment to... attach, I pulled myself out of the bathtub. I got into the shower, sat safely on my stool and washed my hair. I was very proud of myself and felt a little over confident. I opened the door, stood and stepped out of the shower far too quickly and promptly passed out. I was incredibly fortunate that I had a big pile of clothes including my dressing gown and sweatpants on the floor, right where my head landed. Enough cushioning that I didn't even have a bump. After that, I threw up, put myself back to bed and decided I would not be attending the wedding. 

The rest of this update will be posted momentarily in Part Two (which you can now find here)