I know I don’t look sick. I’m lucky if I get 7 “good” day’s a month anymore. My bed has become where I live. I can’t even be the stay at home mom/wife and actually be a helper anymore. When I can drive its always a risk. My anxiety is always high because I never know when the vertigo or head pain will hit. I was diagnosed in 2012 with chiari type 1. But nothing has improved and apparently because the first surgeon I saw showed me my MRI explaining ALL the reasons for the ears ringing, visual issues, head pain, vertigo and balance issues and more…this man was going to do more tests and surgery! I wanted a second opinion. Went to Mayfield Clinic and because my CINE MRI was ok according to them (2013) “it wasn’t the chiari” causing my issues. Went back to the surgeon gave them my CINE MRI disk and explained to nurse I didn’t think he’d want to proceed on tests. She adamantly said my chart indicated i needed surgery…then he saw the CINE from Mayfield and said he couldn’t do anything. I havent heard anything else that it could be. Not MS. Not Fibro. Not a brain tumor. I feel unseen and unheard as I suffer contemplating what my purpose is here anymore. I went to Vanderbilt and was diagnosed with migraine with aura, without aura and vestibular migraines. This was also in 2013. None of the migraine meds worked. Its like they dont know what they’re dealing with. And because then I was 28/29 I was too young. I remember my last 2 jobs before I got married and before my chiari diagnosis. I was on intermittent FMLA for vertigo. My primary thought I had chronic inner ear infections. I was always on the verge of losing my job. I’d sleep on my lunch breaks. At that time I was a single mom. I started to forget things at work. Things I did every day over and over. Its like I got stupid…and its definitely gotten worse 11 years later. Where I’m at in life it feels so hopeless. These doctors arent helping. I may clean up ok when I can and look normal. But I fall all the time. I get scared to shower without my husband being home. I feel the frustration and resentment of a hard working husband with a full time job that comes home and does everything I cant which is A LOT. I’m so tired and so scared of being told its nothing. I know better! This isn’t normal. But when my husband hears ita nothing I get a look of betrayal…like I am a liar. Im going to try harder this year to be seen again. Its been a few years. I gave up. If I dont do something…I’m afraid I will not mentally or emotionally be able to take it anymore. Im so depressed. I feel alone.
You are never alone. So many of us deal with invisible disabilities which may only occasionally become visible and it’s incredibly frustrating. I’m so sorry that you’re so frustrated right now
Sharon from ModSuppport
There have been so many times over the past several years that I could have written this post myself. i’ve been to all of the drs and very few have answers. In addition to Chiari, i also have trigeminal neuralgia, C-PTSD (I think this dx probably applies to so many more of us than we realize, medical trauma is a fact of life for those of us with complex, rare, chronic diseases.) I also have autism, dx as a middle age woman. There is already an established relationship between autism and our cousin disorder EDS, and if the research continues, I think a similar relationship will be found with Chiari. It explains so many of the Chiari symptoms that we all know , but that drs insist aren’t related.
As a rule, I don’t give out advice, as everyone’s situation is different. But I will tell you some of the things that I have done that have improved my situation:
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First, I had an honest conversation with my husband about the amount of pain that I was in, and how much more I was willing to tolerate. We talked about the treatments and drugs that I have tried, and which ones I was willing to continue or try again, and which ones I will never do again. For example, I am up to trying new medications, but I refuse to ever be intubated again under any circumstances. This means no more major surgeries.
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I gave myself permission to live without “contributing” in the ways that I had before I got sick. I would never tell another disabled person that their life was not worth living because of what they couldn’t earn or do around the house or for how that shaped their relationship with their children and spouse, so why was I constantly telling myself that very thing?
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I began learning a new way of living. I cultivated a list of children’s activities and personal hobbies that I can do from bed. Under my within easy reach, are several large bins. Right now we have coloring (gel pens for me, crayons and colored pencils for kids, & tons of coloring books and work books, puzzle books, etc.) Barbies, -and newly added 3 weeks ago- crochet! And snacks, so many snacks.
I do as much of the work around the house, the cleaning, the laundry and the cooking whenever I can, which is sometimes. Some days I can do a lot, and sometimes I am in bed for days at a time and need help to go to the bathroom. If there is anything that can be done online from bed, I do it, from ordering groceries to parent/teacher conferences to drs appointments. If there is something very important that I cannot attend, I either have someone record it for me or watch on FaceTime. I rarely drive anymore, never after having taken altering meds, and will likely need to stop entirely in the next few years, as my vision is affected by the headaches.
*I stopped worrying about trying to present as “normal” or “not sick, not disabled.” I wear clothing that helps with my pain, rather than garments that hurt worse but look more “presentable.” I let my hearing aids be visible. If noise becomes a problem, I wear earplugs and sometimes even headphones over that to quiet the world. I wear my sunglasses indoors if I need to, especially in migraine triggering situations.
*I worked with my family and friends to create a safer environment around me for fall risk. Many people with Chiari have intermittent vertigo or general physical instability, and I am definitely not the exception. After a serious fall a few years ago, causing a TBI and moderate hearing loss, I stopped trying to ignore or “get over” this symptom. I got a chair for my shower. I got a fancy watch that can tell if I have fallen down or been in any sort of impact situation. I can use it to call people on my help list, and I do fall down, and don’t make a call myself, the watch sends a sos message to my help list, in order, until someone replies. And though I hate having it, I use a rollator if I need it that day.
*Finally, I stopped lying to people, or glossing over it, if they asked how i’m feeling. I don’t unload all of the details on a random clerk somewhere when they ask how my day is going, but I don’t say “Great!” either. An OK, or “medium, how about you?” can go a long way towards acknowledging your true self. Putting up a facade of wellness can be very tiring on its own, and I need all of the energy that I can muster to actually get through regular life.
Maybe some of these ideas might work for you, maybe not. But please know that you aren’t alone in your feelings about your illness and its effects on your life and relationships. I wish you the best.
Dear Lucky,
Wow! Can I identify with your struggles. I am now 64. I was finally diagnosed 10 years ago… after years and years of speculations from so many doctors. The final straw was I couldn’t swallow anymore, my memory was drastically affected, I had a 96% CSF blockage and so many other problems. My last MD told me that I needed to prepare for the possibility of early Alzheimer’s Disease. Long story short, I finally did have surgery. I had the full procedure including a cadaver brain lining patch. I can tell you it has been a success. Al things in my head are different now. Some good and others have been hard to adapt to. What I want to tell you is there is hope and a solution out there. I live in a ru farming community and we have a neurosurgeon at our hospital that is beyond amazing. I was so fortunate to be in his care.
I’m so very sorry for your struggles. Nobody can know your pain and suffering. My prayers and good vibes go to you and hope answers will come very soon!
Your friend in Chiari
Hey Sarah,
Personally, I’d have to say that ‘not having a firm diagnosis’ can make things so much more difficult. I’ve had the fun of multiple pseudo diagnosis ie "…well, if it’s not ‘x’ and it’s not ‘y’ it must be xxxx (add any other diagnosis), until it all got to an emergency dept visit situation. They did a scan and came out with the line “ohh, look what we found…” as if it was all something new, I’d been telling them for over 20yrs something was not right and I’d been labelled all types of crazy “we can’t find anything, it must just be YOU…” like this is a choice. Ohhh, I can assure you, you are not alone.
So, they operated on me, and this was going to ‘Fix’ the issue. It did not and I’ve required multiple neurosurgeries since, including the insertion of a shunt to drain the excess CSF from my skull. Each surgery has been to ‘fix’ an issue, but each surgery has been more and more difficult to bounce back from and my own self doubt has proven to be a very HEAVY load to carry.
Then to add to it all we often get comments like ‘You don’t look so good…’ often I minimise it all with a ‘Yea, a bit of a headache…’ type line, when what I have is a man with a HUGE sledgehammer trying to bash his way out of my skull. I think having an invisible condition makes it difficult for others to grasp ‘…but you look fine…’ if others only knew.
I too was put through a regime of migraine meds, epilepsy meds, heart meds and psych meds. In very, very basic terms my Dr was trying to eliminate a brain chemical imbalance, an electrical imbalance, a blood flow imbalance and an emotional imbalance. It took many months of trials of all sorts of concoctions, but once it was established (and documented) that I was not a candidate for these medications, that was another treatment option eliminated. I’ve trialled all sorts of alternative options from acupuncture to hydrotherapy to manipulative physiotherapy to chiropractic therapies etc, etc. If a Dr suggested it, I trialled it. None of them were my ‘key’, but by methodically working through all of their suggestions it showed them that I was being proactive in my own care. I also arranged to see a counsellor because my thoughts were rolling over and over with nothing but negativity and I needed help to get myself out of that mindset.
My suggestion for getting back into a routine is to try volunteering. This is something I did, I explained my situation and tried to manage around it all. The good thing I found was that when I could participate, I did. But when I couldn’t, I could call and explain why and it was understood as a health issue.
Hope it helps and please know we are here if you need.
Merl from the Modsupport Team