Exhaustion Modes in Full Force
I tend to run in several “modes,” most of which, over time, will wipe me out physically and emotionally. I recently realised that most of my automated modes are “drainers” as opposed to “replenishers” and that, my friends, is not a good thing. Let’s talk about some of the drainers, shall we? I promise my next blog post will focus on the replenishers…
Mode Name: Doormat
In doormat mode, I allow others to drain all their heightened emotions onto me. I think it likely comes from a lifetime of being bullied… mostly as a child and young preteen/teen. I was so different and was always “the weird kid” so it’s like I had a target on my back for bullies. Not everyone knows my story there, and that will likely be one for another day, but the short version is, that I was beaten up, smacked about, and verbally abused for many, many years. When it happened, I would sort of freeze up. I would just let my abuser do whatever they wanted until they got tired of it and left me alone. Hence, I became a doormat. I did it to avoid confrontation. I still do it to this very day.
During a brief time in my young adult life (and even late teens), I wore a mask and pretended to be uber-confident. I went out of my way to draw attention to myself in the way I dressed, the way I acted, etc… all in the hopes that it would help me to be more sure of myself and to surround myself with people who would make me stronger and NOT be a doormat. I have to say, that REALLY backfired on me in a number of ways, so that experiment rather failed in my case. I hope someday I can figure out how to not be a doormat and to be a confident, well-adjusted human being… I’m a work in process for now, though.
Mode Name: Empath
In empath mode, my heart goes out so strongly to others and I feel some of what they are feeling in the deepest of my gut. For instance, whenever I go to the hospital, I look around at others and feel a painful longing to comfort them and try to make them feel better. I sit and say silent prayers in my head for them. Especially the ones who are screaming and/or crying…. the ones who are in such obvious agony. The family members who are awaiting or who have just received terrible news, etc… I think I do this because I wish I had someone with me to do the same. I remember how it felt when my Dad was able to go to the hospital with me when I was having a rough go of it, and he would hold my hand or stroke my hair or just sit by me and tell me in his very calm, reassuring voice that everything was going to be okay. I SO miss that now that he is gone and I am flying solo. I guess I want to be that person for ALL of the other people in that hospital waiting room.
Or I will be watching a show on television and someone will be telling their life story, etc… and I sit there getting all wrapped up in it, and then I will either cry happy or sad tears alongside them. I get that from my mother – she was the same way. I know that a lot of people do that – but I go a bit overboard with it. I even have to limit how much I watch on television of the really dramatic stuff for that very reason. I just want to reach out and “make it all better” for everyone else out there (except myself, it would seem).
People who say that if a person is on the autism spectrum, they lack empathy are just bonkers. Sorry, but that is simply not the case. It CAN be, of course, but not always. There are also PLENTY of non-autistic people who lack empathy. Please don’t stereotype us. Thanks.
Mode Name: Financial Ruin
I live on disability. That covers my mortgage each month, as well as my basic utilities… sort of. In the winter months, as well as in the hottest summer months, it doesn’t. All other expenses like household supplies, toiletries, over-the-counter medications and supplements, etc… I simply cannot handle without help. There is no leftover money with which to do so. I have no savings whatsoever. I have sold off anything I had of value (spoiler alert: I didn’t have anything of value), and I have no income outside of my disability stipend each month. I am too sick to hold down a job, yet I need to work and earn a living so bad because my disability stipend does not stretch far enough. I am constantly having to go online and beg for help – either with financial donations or with Amazon wishlist items (so I can have toilet paper, trash bags, etc…) or both! Then, of course, when I DO have to beg online for help, it negatively affects my mental health. This mode is a mode that I have been in for several years now, even worse since my Dad passed away two years ago (we used to pool our money and were able to just about make ends meet and be able to keep up the house, etc…).
This is a 24/7/365 stressor. As such, you may imagine how it affects not just mental health, but physical as well. I never TRULY rest, even when I sleep… because I feel like at the back of my mind, I am always worrying about money. I did once have a dream that someone paid off what was left on my mortgage (about $79k) and I was FINALLY able to relax a bit because I could afford to pay my bills, get my heating repaired, have my yard cut every couple of weeks, etc… normal stuff. However, when I awakened and realised that it was a dream and my real nightmare was still very much real and ongoing, I laid in bed and cried for an hour until I made myself sick. This mode is a doozy, folks, and not one I would wish on anyone.
Mode Name: Chronic Illness Warrior
This is a mode that I was thrown into several years back and one that I will, unfortunately, be in for the rest of my life since I have six autoimmune diseases, pseudotumor cerebri (which causes CSF leaks), etc… I am in warrior mode all the time. I fight hard every single day. I do all of the things I am supposed to be doing to try and combat things – I do not eat processed food, I am gluten-free, I stick to a keto diet, I drink lots of water, I take vitamins and supplements, I try to get as much sleep as my body will allow me to (I struggle with sleep), and… even though I am limited with physical movement at the moment, on days when I DO feel well enough, I try to do SOME form of physical therapy every day. It may not be much, but something is better than nothing. I do ALL of that, but I am still going to go into autoimmune flares, I am still going to have high intracranial pressure days and the accompanying migraines and I am still battling lots of vertigo and nausea (which I am holding onto HOPE will get better at some point since I have had the craniotomy to repair that last CSF leak). This mode, not unlike the financial ruin mode, also runs 24/7/365, but at least with this mode, some days CAN be better than others. In financial ruin mode, they are all equally stressful. I try to squeeze out any joy I can from those – even if it is just for five or ten minutes. It is better to have some than none. This warrior keeps fighting all of the battles… but, admittedly, has become quite battle-worn.
Mode Name: Panic and Anxiety Mode:
I was diagnosed with anxiety at the age of four. The doctor told my mother that as a result, I was a “sensitive child” and that there wasn’t much they could do to help me other than to try and distract me and/or to calm me during meltdowns. That was 1969/1970ish… they didn’t know as much back then as they do now. But at the end of the day, that advice, overall, still rings true. Of course, they also didn’t know back then that I had autism… but once again, I am not sure it would have mattered. It might have certainly explained all of the sensory issues, however. Those sensory issues threw me into major meltdowns at school. I still have sensory issues today, and thankfully, I have learned to manage them much better. I do still struggle, but I keep a lot of it bottled up inside and then wait until I get home to meltdown in private. This is exhausting, but is what is expected of us… so I try my best to abide. It is very rare these days that I go into a full-blown meltdown, and it is scary for me and others whenever I do because I go nonverbal and cannot stop crying. I have been known to hit myself a lot, violently rock, and/or perform other self-injurious behaviours. This is why I fight so hard to keep myself away from situations and stressful things that may send me into meltdowns like that. I may ask people to leave me alone for a while so I can collect myself, or I may remove myself from a situation or conversation, etc… if I am physically able to do so.
It’s when other people do not respect my request to allow me to calm myself down and not get so worked up when it becomes an issue. It becomes an issue because I now suffer from high blood pressure and when my stress levels get super high, my blood pressure can shoot up to 200 something/100 something, and I suddenly start feeling as though I am going to pass out. I am on blood pressure meds and my BP stays controlled for the most part… but if I get in a situation where I get super stressed, it can spike quickly. This throws a whole new level of danger and stress on my body than “just plain old autism and anxiety” ever did. I can do everything in my power to try and keep myself out of situations that cause me extreme stress, but I cannot control everything. Outside forces and other people come into play and I cannot control them.
Also as a result of my anxiety AND my state of constant stress, I have recurring panic attacks. They can hit seemingly out of the blue and last anywhere from a few minutes to a few hours. I do have some “rescue” medication that I can take, but it is strong stuff and I prefer not to take it if I can avoid it. Yes, I know how to do the “five things” grounding exercises, I know how to meditate, I know how to do yoga breathing (Pranayama), and I have a whole ARSENAL of “tools” at my disposal – but sometimes the attacks get so bad that I cannot focus enough to fully engage with those tools thoroughly for it to make a difference. I DO TRY… trust me. Having lived with this for nearly the whole of my life, I am constantly trying to stay on top of it – but I am not always successful. I won’t stop trying, however. I can’t.
Mode Name: Depression
I have had depression for years. Unfortunately, what was once just mild depression has progressed to moderate to severe depression. Yes, I have tried meds – for both my anxiety AND depression. They either had too many side effects, or they would not play nicely with my Lupus medication. I would give anything if something had worked. One medication even made me suicidal (which I was later told is not uncommon for people on the autism spectrum). It took me WEEKS to wean off of that one and it was a nightmare. I have found that for both my anxiety and my depression, it helps me to be able to get out in nature and spend some time outdoors. I am rather limited with that, however, because the only accessible option to me in my wheelchair is to roll out onto my driveway, or onto the sidewalk in front of the front porch near the driveway. I’m technically outdoors, but that’s about it. I used to LOVE hiking, camping, kayaking, etc… but none of that is available to me now. What breaks my heart the most is that I cannot even get out in my own yard and be near the beautiful hardwood trees I have on my property – oaks, maples, sycamores, etc… I can see them in the distance, but I cannot get to them – not safely, anyway, as my wheelchair was not made for “off-roading”. I pretty much just park on my driveway down next to the road (where the pavement is level) because there *is* a tree there, so I at least have a bit of protection from the sun (necessary since I have Lupus). I go out there and basically… just sit there. Now I DO watch birds, and I DO listen for bird song when I can hear it. I revel in any breezes as they caress my face. I am SO thankful that I can get outside at all, even if it is to simply sit on pavement because just a couple of years ago, I was trapped upstairs in my house and could not even get out there to do that. At least I have a ramp now and a stair lift (albeit a rickety one that is about to play out on me) to get me down the stairs. So yes… that situation IS better than it was. I guess I am being greedy because I KNOW how beneficial it is for me to spend time outdoors in nature – I know the positive effect it can have on my mental health. In my current situation though, I find myself parking in the driveway and looking back up at my house, noting in my head all the things that need doing. I think about the siding falling off, that there is black mould all over the place, that the rails on the porch are rotting away, and that I need to have some gravel installed around the front porch so I don’t have to worry about weeds overtaking it since I am not able to do the work to keep them trimmed away. Then that leads me down other rabbit holes like how I have no access to my backyard whatsoever, and that the weeds and trees growing behind it are compromising my old wooden fence and will likely push it over at some point. Then I think about SO many other projects in the yard… how I want to have my dearly departed pets’ graveyard cleaned out where all the weeds and wild shrubs have overtaken it. Dad and I used to keep it so neat and nice. It looks like a mini forest out there now… I used to be able to mow in there, but there would be no way to get a mower in there now. When I think of how hard I worked to clear all of that land out when we first moved here in 2008… SO many days of hard labour… for it to end up looking like it does now….
So you see – I spiral into this awfulness if I sit out there for too long. I think the problem is the “just sitting there”… I need to be DOING. And I don’t always feel like DOING. Therein lies the rub. But still… I persevere. I try to get outside every day even if it is only for a few minutes. I may not be able to do anything out there, but getting some fresh air HAS to help a little bit. I am ever so desperate to find anything at all that can help. I sure would love to go on a proper hike, though… *sigh*
Mode Name: Appointment Games
As you can imagine, having all of these autoimmune diseases, as well as thyroid disease (Hashitmoto’s/Thyromegaly), and the neurological stuff with the pseudotumor cerebri…. well… that is going to require a LOT of doctor’s appointments with different doctors and specialists. In addition to that, there’s chiropractic visits for my spine issues (herniated discs, etc…), and physical therapy visits. Right now, post-surgery, I have to lay off the chiropractic and the in-person PT for a couple of months, but hopefully, I will get back to my regular schedule with those soon. I was doing chiro two or three times a week for herniated discs (getting disc decompression therapy) and was doing PT twice a week. Both were beneficial to me. Right now, my insurance is paying for limited visits from a home health agency who send a physical therapist out once or twice a week to make sure I am moving my legs around a bit, even in the bed. Like I keep saying – some is better than none… so I am thankful for it.
But there is an element to all of these appointments that I struggle with. The scheduling. Each of these entities, be it doctors, chiro, PT, etc… all have different methods of communication. Right now, I cannot wear my hearing aids, so if it is a phone call, I have to rely on my friend to call for me. Some of them use an online portal. Some of them can do email. The home health people text me. It’s all over the map and I have been SO unorganised in my illness. I used to be almost hyper-organised, calendar wise… nowadays, not so much. I need to get better at it. I feel like I am rubbish at it on the phone because I can’t see the calendar apps well enough to do anything with them. I have to pull out the laptop and that isn’t always convenient. But I need to get better about mapping it all out…. not least of all because I rely on my dear friend Ford to take me to these appointments, and when he can’t do it, I am scrambling to figure out how I will get there. If I am not better organised, I will find myself missing appointments if I don’t have transportation arranged. I find myself constantly quizzing myself internally about if I have any upcoming appointments, when they are, where they are, do I have a way there and back, what do I need to take with me, are there any forms to fill out, will I need to find a way to pay upfront, etc…
Mode Name: Abandonment
There. I said it. This one haunts me quite a lot, although I do my best to try not to think about it – but I find it often thwarting my efforts.
As sad and as crazy as this sounds, I feel as though I have been largely abandoned by both friends and family. Not all of them, mind you… and not completely… I do have friends who are good to check on me via text or online messaging. That is so awesome, and I am ever so grateful for them. I have one friend here who comes to see me (the same friend who takes me to medical appointments, etc…) But… pretty much everyone else doesn’t. Other than that one friend, I rarely see other people here at my house. Unless it’s in a medical capacity – home health workers (who are here for 10-20 minutes or so), or emergency workers if I need to call for an ambulance to the hospital emergency room. It just isn’t a thing. I am grateful and over the moon when I DO get a visit from someone, but it very rarely occurs.
I live on a street with four houses. My neighbours don’t really hang out with one another. I wave as they pass by if I am in my driveway, but no one ever stops to chat. I rarely talk to them. One of my neighbours sometimes runs his lawnmower over my front lawn when he is doing his own (for which I am incredibly grateful) and I do try and make it a point if I am feeling strong enough to get myself outside while he is out there so I can personally thank him for it). But pretty much, no one sees or talks to anyone. I don’t know loads of people around where I live. Of the ones that I know, everyone is busy with their own lives. People don’t think to go and “visit the infirmed or shut-ins” anymore. (We did that a lot when I was a kid). My very dear friends/bffs live back in the UK where I lived when I went to university. I am not physically or financially able to go and visit them. I never see any family. Most of the ones I have left live very far away and… like I said… people have lives. I am not a part of them. It is what it is. This is the reality for many people, I get that… but it doesn’t make it suck any less. The feelings of abandonment are very real, even if I know that people likely aren’t PURPOSEFULLY abandoning me – it does feel like it. Loneliness and isolation can play terrible tricks on a person’s mind, and at some point, one starts to believe those negative inner voices.
And sometimes I just sit and cry. Okay… a lot of times. This is a big one for me. A real struggle.
When I was growing up, we had a lovely, close-knit family. As the older generation died off… the family all went their own ways and no one seemed to even talk to or see each other anymore. It’s a lot to process – especially when going through super hard times when you’d love nothing more than to see and spend time with family and/or close friends and feel supported and loved. When that doesn’t happen, it can be gut-wrenching.
In Conclusion
So these are the more “negative” of the modes that I experience. Those are modes that I spend a great deal of time in and fight to try and claw my way out of on a daily basis. Sometimes on an hourly basis. Sometimes it’s minute by minute. But I think it is important to acknowledge that these modes very much exist and to be aware of how detrimental they can be to my overall health, particularly as I have spent an extended amount of time in each of these modes, with some of them being a “round the clock” sort of thing.
I don’t put all of this out here to make people pity me, that is not my intent. My aim is to maybe reach other people who are in the same boat as me to let them know that they are not, truly, alone… even though many of us DO feel that way (myself included). A lot of what I am going through, I know that other people with chronic illness may also be experiencing. I am not anyone special. I am just a person with a computer and a blog site who shouts their thoughts out into the ether in the hopes that SOMEONE out there will hear them and possibly relate.
I know that most people likely have family or an assortment of friends they can talk to about this stuff. Other people may have access to all the support they need. But then there are those of us who don’t. There are those of us who are homebound and alone. There are those of us who often feel hopeless and done. For all of you…. I see you. I feel you. I am sending love to you. Please hang in there. I have to tell myself to do the same every single day of my life…. but I am telling you to now. It HAS to get better. Hold on.