I had a doctor’s appointment today in Halifax. I had to go into the office because I needed a pap test. Since I was going into the office I had wanted to talk to him about the racing heart/high heart rate, dizziness, and all the other symptoms that I have been having since earlier this year. I was a bit concerned he might not take it seriously, but I needn’t have worried because the happened right there in the office as he was watching. I mentioned it just a few minutes before it happened and he asked what my Fitbit Versa lite said my heart rate was. It said 121, he checked with one of the finger pulse ox monitors and it said 125.
After the pap test, he handed me my bottoms and asked me to wiggle into them if I could without sitting up and left for a moment. I wiggled into them and called him back in and he then checked my Fitbit and it said 80 and his pulse ox monitor said 84. He then had me stand right up. It took about 45 seconds but I started getting dizzy. He checked again and my pulse was 125, he had me continue to stand for 5 more minutes while we discussed other symptoms and he checked again and I was 143.
He asked if this happened a lot and I said often. Basically I noticed it sometime after my car accident and it got worse about March or April until it was several times a day that it would happen. Interestingly enough it’s happened to me before. It’s been happening off and on for years and years. He said this was not normal and indicates something really is wrong. So he wants me to get blood work to see what it comes up with, in the meantime, he’s going to refer me to a cardiologist and is hoping they will set up a monitor to monitor my heart for a few days to see if they can diagnose something.
While writing this I decided to do some searches on my blog for similar symptoms and found a bunch of stuff. I actually mentioned the symptoms in a post back in February of this year, and I mentioned it as far back as this post in May 2013. I mention headaches, nausea, and dizziness or vertigo and throwing up and trips to the ER for fainting or falling.
I remember going to physio and looked it up and I ended up in physical therapy at the Atlantic Balance and Dizziness Center in 2013 for what they thought might be benign paroxysmal positional vertigo, which they could not definitively diagnose as I did not have nystagmus (repetitive, uncontrolled movements of the eye), which I mention in this post in March 2013. I am wondering now if what I was experiencing back then is the same thing as now.
I don’t remember what tests they did at the time. I have been trying to figure it out by going back through my posts from early 2013 but I can’t find any specifics, I am sure they did some though. I do talk about “brain fog” or concentration issues/confusion. I also talk about poor sleep or insomnia, fatigue, constant pain, and even chest pain. I would not have had any sort of Fitbit or anything at the time though so my heart rate would have gone unnoticed if it was elevated at any point (ie sitting, standing, etc.) and if they didn’t specifically check it then it would have gone unnoticed as well. I can’t honestly remember if they would have or not.
Either way, I think that I am getting somewhere with this finally. Considering it’s been at least 7 years according to those posts. I didn’t look much at the years in between but I know that I have been experiencing a lot of these symptoms throughout at one time or another, and sometimes they would be worse than others. It’s got me a bit intrigued and I am hoping that COVID won’t get in the way of a diagnosis, but I am scared it might.
I have mentioned my parent’s house before in my blog. The picture above is a house similar to theirs only theirs has been added onto on the right-hand side of the house (if you’re facing the house) in a couple of sections. The house was built sometime in the 1840s-1860s, we don’t know the exact date. It’s beautiful and old. I have also mentioned before about it being haunted by a woman who at the time we were told was named Ethel (or Edna, poor ghosts been called all kinds of things). I want to tell you a bit more about the haunting(s) and some stories about things that have happened in the house since they moved in. I believe I might have mentioned in a previous post about one of the earlier things that happened, however, I can’t remember if I have so if this is not new, I’m sorry
My parents moved into the house knowing it was supposedly haunted. For the first few weeks, they didn’t sense, hear, or see anything at all, and neither did we when we visited or stayed over. Within a few weeks though, they started hearing some footsteps upstairs. Nothing too alarming just steps when they knew there was no one up there, knowing the history of the experiences past owners had of the house they didn’t think a whole lot about it.
Within the first few months of living in the house, something rather spectacular happened, depending on how you look at it. My parents were asleep in the house one night when my Mom was woken up by knocking on the wall above her bed. She described it to me later as three knocks in a row, followed by quiet and then repeated. This went on for a little while becoming more insistent over time. Knowing the stories about the house Mom said somewhat jokingly “Ethel, what in the hell do you want?” After that, she said the knocking stopped for a bit. The master bedroom basically covers the whole left side of the top floor when looking at the house from the front. Their bed was against the back wall of the house at that time and the knocking started over her head, but she said it sounded like it was coming from the outside of the house. Well, that would be on the second floor.
It continued and started to move around the side of the house onto the left side of the bedroom, so Mom woke my dad and he listened and said he heard it too. Being skeptic he assumed someone was outside trying to steal something and the sound was echoing up to them. He woke up my younger brother who lives at home and they went outside and looked around, not finding anything at all. They headed back into the house and back to bed. As Dad was falling back to sleep they heard the knocking again, they talked a bit trying to ignore it but it was still quite insistent. Dad grudgingly got back up, got my brother again who said he could also hear it, it was echoing. They headed back outside again to look around and on the side of the house, they found the electricity wires going into the box on the side of the house on fire and sparking and the siding starting to melt.
My brother took off running into the house, called 911 asking them to send the fire department, yelled for my Mom to get dressed fast and get downstairs while my Dad grabbed a ladder. The fire department showed up in a few minutes as they were just down the road about a kilometer and a half, they put out the fire, turned off the electricity and told my parents to call Nova Scotia Power and an electrician before it could be turned back on. One of the firefighters asked my parents how in the middle of the night while asleep did they manage to wake up and find it and my parents said: “You wouldn’t believe us if we told you”.
The next day they moved into the house we are in now temporarily which they own and they called me and told me and my husband what happened, all of it including the knocks, the fire, everything Mom was convinced they were being warned of danger. Even my Dad seemed to think that “Ethel” the ghost was trying to warn them of what was about to happen and trying to get them to save her house and to save themselves and I have to say, I agree. After that, even Dad seemed to enjoy their housemate and talk to her when he thought she might be listening. They thanked her and things quieted down for a time. During this time they were told by the previous owner that her name was Edith not Ethel. Mom never really questioned if this was a name they were told by someone or if it was a name they gave her but we both really feel that it’s the correct name. Odd as that sounds.
More recently my parents have been experiencing things again at the house. I have also had a few experiences as well before we started social distancing. Things had settled down between then and recently however, they still heard footprints, had the feeling they weren’t alone but never felt uneasy during the time in between. Instead, they said they felt welcome and felt that there was someone watching over them and the house and felt peaceful and comfortable in the house. They have never felt anything menacing or felt overly uneasy beyond the idea of sharing the house with someone who left the world years ago. In fact, Mom said numerous times she would wake up to a warm feeling after feeling cold and more than once woke up to watch a blanket being pulled up after falling off her by an invisible hand and feeling comforted by it.
So over the last few months, my Dad has been having issues with his legs due to a slipped disk causing issues with going up and down the stairs which are steep and narrow. The upstairs landing has a small alcove, if you look at the image above which is similar to their house it would be where the window is upstairs on the front, so the stairs and landing or hall area or whatever you call it are in the middle of that section of the house and there is a low railing all along with the stair opening so you don’t fall down. The flooring is tilted toward the railing and it gives you the feeling of being in a funhouse in a fair or theme park. It’s a bit unsettling and combined with the stairs makes it unsafe for Dad to go up and down right now so they have been sleeping on the couches downstairs (which are thankfully recliners) in the living room under the master bedroom on the bottom floor. This is significant for the next part of the story I am going to tell you because if they were upstairs I don’t think they would be experiencing it.
Since sleeping downstairs Mom said she has been seeing a light shining in the window waking her up early every morning before the sun was even coming up. She described the light to me as a lantern light when she finally told me about it. It actually took her a few months to tell me. It’s been months of it every morning at the same exact time. At first, she was scared and woke my Dad up and he saw it numerous times as well and says the same thing, that it’s a flickering lantern-like light. Thinking someone was trying to break in and they scared them off they went back to sleep. After a few times of this happening, they started to realize it was the same time every morning at exactly 4 a.m. and they started feeling less afraid and more intrigued. They never told me though, not at that point. It was a few months before they finally told me about it. It’s still happening to this day but they are no longer afraid.
Before they actually started experiencing the light in the window I actually experienced something that was outside the window on the lawn when I was in the kitchen downstairs, which I never told them about as I thought my Dad was uneasy about everything and because my brother gets really freaked out by some of it, so I kept it to myself. Over Christmas Edward and I stayed a few nights. The night before Christmas Eve I woke up in the middle of the night to use the washroom. I don’t like the one upstairs, it’s small, claustrophobic and I have to walk the part of the landing area I don’t particularly like to walk on so I usually go downstairs to the one down there.
I went down the stairs, across the kitchen, and turned the kitchen light on. The bathroom downstairs is off the kitchen which is on the right side of the house under my brother’s bedroom and the spare bedroom we sleep in when we stay there for the night. It’s in one of the add-on parts to the right of the main original part of the house and so I used the washroom, left, turned the kitchen light off, and turned towards the front window in the kitchen and out on the lawn out front was a floating light. It looked like a lantern, I say this because it was more yellow then white which a newer led flashlight would be, it was flickering like a flame but also bouncing up and down while basically going across the lawn.
I never really thought much of it and just sort of shrugged it off. No one else at that point was mentioning having any experiences other than the footsteps, which I had heard as well, but stuff like that never bothered me as I experienced it before when we lived in Germany and also when we lived in my grandparent’s house on Digby Neck when I was in high school. I’ll tell that story and some other ones another day. On the property behind the house there is a path down through the backyard, then woods, then a field and down to the beach. I think they mentioned it’s a little over a kilometer. Over the summer camping there I found the woods sometimes I felt like I was being watched but again I never really felt more than slightly uncomfortable. I still felt and I think we all feel that whatever presence is protective extends out there even if the actual spirit can’t.
It wasn’t until about 2 weeks ago when Mom and I were having a conversation that she finally told me. The day before she told me about a dream she had one night a few weeks ago. I don’t remember the exact conversation but in the dream, there was a poem and when she woke up she felt she needed to write it down, so she did:
RAY OF LIGHT
He came to me on a ray of light
He came to chat in the middle of the night
He came to say God needs me home
Where God needs me I will roam
He took me home on his wings of white
All the way on that ray of light
To see my family again at last
All of them who have previously passed
Mom and Dad were there
And my brothers too
With open arms
That said we all missed you
Smiles and hugs all around
Love and joy did abound
God said you have family here
But your earthly family also cares
If you feel they need you still
It can be arranged with your free will
I had the choice to stay or go
My earthly family still needs me so
I still had things to do down there
Before my time on earth was done
He said the choice was mine to make
All the time I needed I could take
I hugged my family and said goodbye
My time left on earth would surely fly
He took me back through the ray of light
To my earthly home on his wings of white
To finish what I started there
And for my earthly family to prepare
For my journey on earth would soon be done
And I would then be in my heavenly home
At first, the night she sent me the poem I was concerned about her. I thought it was about her as she has two brothers in heaven but no sisters. Her sisters are alive and both her parents have passed on (third paragraph). I don’t know what I thought but it didn’t sit right with me at the time. Then the next day she told me about what was happening at 4 a.m. and what she thought it meant and that Dad agreed with her and that they both believe that the poem was not about Mom, that it was about her, about Edith. I’ll go into that a bit more near the end.
They believe that the person or spirit outside the house is likely the husband of the woman inside the house and is looking for her and that they either don’t know each other is there or that they can see each other but can’t interact for some reason or something similar. They have the feeling they both want to. It kind of fits with stories we have heard from the previous owners about a Sea Captain and his wife. That his wife passed away while he was out to sea and she was put in a shed waiting for him and for the ground to thaw out as it was winter. A common practice in the Maritimes at the time they would have been alive.
Mom did some research on a genweb website for the area and found some couples who she believes lived in the house or on the property around the time the house was built and one of the women was named Edith, her husband William. I was able to pull up quite a bit of information on the couple with Ancestry.ca and Ancestry.com as well as some other sites including the dates they were born, their parent’s names, and addresses. His parents actually correspond with the right timeframe the house would have been built and are listed as living at what would be the address now. Her parents were from the next community over and she was born there and married him in their early 20s in a church close by. After that though, it doesn’t quite seem to fit as they moved to Massachusetts.
She died in Massachusetts in her late 40’s leaving behind 2 young kids. He didn’t die until his 80s also in Massachusetts. There is no record of where she was buried even though there are records for him and both children as well as a baby they lost in between the two children, all buried in Massachusetts except her, or at least as I said there is no record of her being buried there that I can find. Somehow it makes Mom and I both wonder if she was sent back to Nova Scotia for some reason for burial. William’s brother got the property we believe is Mom and Dad’s house. We are wondering if she was sent to be buried on the land or maybe her parent’s land or a cemetery here. I plan to go looking when we finally can get out.
I don’t know why but I really think we are onto something but at the same time, there are a lot of things that don’t quite fit. Mom feels the same. As mom said she felt the poem was about Edith, in fact she said she feels Edith gave her the poem. I didn’t mention it above but after Mom told me she wrote it, that it was not a poem someone else wrote but that she wrote based on the dream I literally looked the poem up line by line on google trying to find it, trying to find proof that someone else wrote it. I couldn’t find anything at all. It appears she did write it, or Edith did. Of everything, it’s the one thing that really unsettles me. It’s a beautiful poem but at the same time, I did not want it to be about Mom or Edith, who at this point feels like family, and interestingly enough we did find out that the Edith we researched is related. So maybe there is something in that?
First off I just really want to say a big thank you so so much to everyone who has commented or even just read my posts over the last few months. Your support and comments have meant the world to me. Not even one bit of negativity or bashing from anyone. Just all kind thoughts and support and I really really appreciate it. This is why I love blogging and all of you guys!
As you may have guess from the title I want to write a little about things that have been going on with me in part over the last few months but really ever since all of this started years ago. In all of this there is one thing that has really really been bothering me. The need to basically “self-diagnose” because our health care system is so broken that it takes 5, 10, 15, 20 plus years to get a diagnosis and for me at least the diagnosis’s I have gotten just never really seem to fit or make sense fully.
I kind of feel like all that is now coming to a head and that I am actually starting to get somewhere, but not because of my doctor or the healthcare system here in Nova Scotia (or Canada in general), but instead because myself, my husband, my mom and my aunt (who is a nurse) have been doing tons and tons of research and trying to really figure out what is going on with me.
The health care system here has really failed me as it has so many people for both my mental and my physical health. Sure we have free health care. I can go to a hospital and not worry about getting a bill for it or have a MRI done in a provincial hospital and not worry about the bill, but at what cost? If I had a broken bone or a very typical illness or an emergency, this is great and I would get the help that I need.
However, if like myself or the thousands of people in my province or the tens or even hundreds of thousands of people in the country like myself who have a “invisible illness” this is not the case. I have waited probably half my life for a proper diagnosis and treatment for all my symptoms. The wait time for specialists such as Internal Medicine, Cardiology, Neurology, Rheumetology and tons more (due to shortages as we do not pay them enough) is months if not years.
The wait for public funded services such as Mamograms, CTs, MRIs, Physio, etc is months or years as well unless an emergency in which it can still be a few days, weeks, or even months sometimes. I have a been referred to a pain clinic and my wait time as of right now is 9 to 12 months, once they find a doctor, they do not even have a doctor at the moment! She retired and there is literally no one to replace her. They have been searching for months. So when they finally do find one my wait will be another 9-12 months after that.
So what does that mean? I had to be put on the lists for places, 1, 2, 3 or more hours away and hope that maybe just maybe they will have an opening before the original one does and I will have to drive half way or more across the province to get the help I need and that is not even the worst of it, some people have to go out of province, sometimes 1, 2 or 3 provinces away to get the help they need.
It’s no wonder myself and so many other people are turning to self-diagnosis. My family doctor has been my family doctor now for almost 20 years. He is a great guy and I used to trust him completely. Lately though he like so many other family doctors around here have to double and triple book patients every 15 minutes because there is so many of them. I get maybe 5 min if I am lucky with him. By the time he reads my chart he is already thinking about the next patient and not giving me his full attention. It’s not his fault. He works from 8:30 a.m. to 9 p.m. 6 days a week. He fills in for the on call doctors. I get no where because he doesn’t have time to listen and just rattles off a prescription.
The waiting list for Nova Scotian’s without a family doctor has topped 50,000 last year from 10,000 less then two years before that. Doctors are retiring or moving and there is no one to replace them fast enough. Same with nurses and other health care professionals and health care service providers. Most are understaffed, underpaid and don’t have the resources they need. I know it could be worse and probably will be at some point.
So because of this I have been making a list of my symptoms, which I will list below and I have been doing research on sites such as WebMD, Mayo Clinic, University hospital sites, etc, as well as watching a ton of YouTube videos by people suffering from similar symptoms to see what their diagnosis’s are and see if I can find some common ground with some of my symptoms. Now, I am a Type 2 diabetic and I do have Fibromyalgia and those I do not doubt. It’s plainly obvious I am diabetic and medication works. As for Fibro I am sure I have it and don’t doubt that diagnosis at all, however I do not feel that it even covers a quarter of my symptoms.
Here is a list:
– constant fatigue that is not helped by sleep
– brain fog or a fuzzy feeling in my head
– weakness in my neck, arm and leg muscles
– difficulty concentrating and finding words or forming sentences
– constant headache (feels like a tension type headache or pressure and in the back of my head around where my skull meets my neck and basically all over)
– head feels heavy and I feel like a bobble-head doll (literally swaying and bouncing feeling even when sitting or standing still)
– pain in my head, neck and also in my back, and legs when standing
– numbness and tingling in my extremities
– constant thirst (could be from my diabetes but happens even when my sugars are controlled and stable and not going up and down drastically and are in the normal range)
– constantly have to pee every 15-30 minutes, very little pee (same as above, even when sugars are stable, etc)
– sleep disturbances (waking up nauseous, dizzy, heart pounding)
– feel dizzy when standing from a sitting or laying position (sometimes I pass out and fall or just black out, I can still hear when my vision starts to fade into a “black out” and stand but I can’t walk because I have no sense of direction or where I am or what is around me)
– heart rate increases when standing from a sitting or laying position (when laying down I am about 70-75 and when sitting 80-85, when standing I go to 120 or higher quite often, but not always. I have gone from 70 to 145 in about 3 minutes)
– nausea and vomiting (I pass out just about every time if I bend over the toilet, a bucket, whatever while vomiting so I have to vomit in the bathroom sink then clean the sink after or hold a bucket on my lap while sitting).
– when sitting my hands and feet get really cold and blue or mottled looking
– when I stand my feet and shins get red and hot the longer I stand same with my hands and arms below my elbows (this is not super noticeable and not bothersome)
– when standing up my vision blurs, sometimes I get black spots (not floaters but almost like grey or black paint ball shaped spots, sometimes somewhat see-through)
– ringing in the ears
– balance issues and falling easily
– issues swallowing sometimes out of no where
– get hot really easily and feel like I am going to pass out especially when sitting up or standing, face flushes but my hands and feet are still cold
– heartburn, vomiting undigested food a lot
– chronic diarrhea and constipation both sometimes at the same time (ie, constipation for hours followed by diarrhea when I can finally go)
– shortness of breath
– chest pain
– increased sweating/night sweats (I still feel cold)
– asthma like symptoms even though I have been tested and pass the tests, my doctor still treats me with inhalers.
– panic attacks/anxiety
So what do all of those symptoms have in common? Well, for the longest time all I could say was “Hell if I know”. I could not get any doctor to make sense of them. At that point I had not actually checked my heart rate and I have never taken note of my blood pressure when standing so they would not have had any of that information at the time. I also likely never listed it all out at once, It was symptoms that came on over months and I would complain about them and he would try a medication to treat the symptom without really trying to get to much at the reason why. After I while I would stop mentioning it but was still happening and I would just mention new ones as they came along.
After my aunt did a lot of research she mentioned to me a couple months ago it sounds like POTS or Postural Orthostatic Tachycardia Syndrome which is essentially not enough blood getting back up to your heart when standing from a sitting or lying position which makes your heart beat faster and causes dizziness and can sometimes cause syncope (fainting) in a certain percentage of people with it. It is commonly caused by or associated with EDS or Ehlers-Danlos Syndrome but can be caused by other things. She wondered if I might have EDS due to the pain I was in and the fact I have dislocated joints a lot more then most people and the fact that every scar I have (and I have a few) are keloid scars which is common in people with EDS because of thin stretch skin.
However EDS didn’t quite fit because even though I have dislocated joints it wasn’t doing day to day activities it was from injuries such as falls and such. I do not appear to have hypermobility of joints at all as an adult in fact quite the opposite. As a child I was only mildly hypermobile but I was into a lot of sports, gymnastics, figure skating, etc. I also do not have stretch or thin skin even though all my scars become keloid scars, the skin itself does not stretch far and does not rip easily at all.
POTS fits almost all of my symptoms perfectly. I finally felt like I had a possible answer that made sense. While researching to more I wondered if any of my previous car accidents had anything to do with it. Up until my car accident in 2009 I was doing really well and though I did not think I got hurt in the car accident I am now starting to wonder if it did cause some issues, since then I have been in 3 more. One where we were hit head on on an 80km road by someone turning left and then the two with deer. The last of which was just a few months ago. 3 of the 4 accidents totaled the cars we were in. Only the last one did total the car but it came super close.
On a POTS Facebook group someone asked if others felt like they were “floating” all the time. I replied and said that I yes but more of a “bobble-head” sensation and someone else replied to look up Craniocervical instability and I did and it fits the rest of my symptoms perfectly and even explains the cause of the POTS if I do indeed have them. Now, I know the dangers of self-diagnosing but at the same time, when you have no other choice you start looking for answers and I am wondering if I could potentially finally have them. I know I as well I have said that before and again that is the danger of self-diagnosing but again at this point I feel that I really need to advocate for myself and really need to push to be checked and tested for these two things. I am really hoping for once I am on the right track but I know there is a good chance we could be wrong as well.
I just wish I knew how to get the help I need to get to the root of all the symptoms whether or not it is these two things or something else all together. I am so tired of being tired and in pain. It’s affecting my life so bad right now that I am struggling so hard to cope and I am concerned of the toll it is taking on my mental health. It’s not like I can just go to a new doctor, since there are none to switch too. So I have to keep trying on my own to get them to listen and help me.