Pain, Fatigue & Kittens!

Photo by little plant on Unsplash

It’s a cute kitten kind of a day! Why? Because I just need to look at their sweet faces. Actually, we are getting a kitten in about 5-6 weeks. Two little orange ones we are naming Mango and Marmalade! These are not them by the way. Just two cuties I found on Unsplash. I don’t have any pictures of the ones we are getting yet. We are taking Marmalade and Mom and Dad are taking Mango, as long as Max does alright with Marmalade, if not Mom and Dad are taking both but one is still ours.

I guess it doesn’t really matter in the long run because we are actually moving sometime within the next couple of months into the house they are in sort of with them. I say sort of because they have a trailer behind the house that they want to stay in, it has heat, a/c, a full washroom, kitchenette, etc. It’s a camper trailer, not a mobile home, but the plan is for them to eventually start travelling Canada and the US with it and only being here a couple of months in the summer and staying on the property with it down by the pool where it is now.

It may be a year or more before we get there though, one because of COVID-19 and two because they both need surgery. Which is why we are moving there. Dad needs surgery on his back, he has a few problems including a couple of herniated disks. Denton will be moving into the cottage on his own (fingers crossed) and we will be moving into the old house, the “haunted” one, which should be interesting. We are moving into the master bedroom, there will be a spare room which we hope will be used soon enough for a foster child, which we will start the process for once we are moved in and things are settled down a bit and then the 3rd bedroom will be a spare for Mom and Dad or Denton in case they need to sleep in the house.

Dad can’t use the upstairs at all so they have not been sleeping up there, which is why they were initially out in the camper, they love it though so they want to stay there even over the winter. We will just have to see how it goes. I am both excited and somewhat scared it won’t work out well. It’s important though to try and get my brother out of there and into his own place because they can’t handle him anymore, but I am not going to get into that at the moment, maybe later.

In other news, I have been experiencing some major fatigue, like completely debilitating fatigue. I am having the hardest time sometimes just sitting up on the couch. I’ve had issues with fatigue before, but nothing like this. I am struggling with everything at the moment. Mentally wise, not so much. I am actually okay. Maybe a bit stressed and slightly anxious but, no depression. I am not sure if the fatigue is from being in the pool so much. I am in there a few hours every other day. This started before the pool was up though and I have just been fighting it for a long time as it gets worse.

I start school at the beginning of September again so this should be interesting considering I will need to be in Halifax (a 2 1/2 hour drive) for 2 days a week. I am just going to have to power through. I am absolutely determined to make this work despite all the setbacks. I have been doing my best to just keep occupied and deal with the pain, fatigue, headaches, dizziness and nausea(and more) that has been going on forever and has just gotten worse since COVID-19 started (of course when I can not get in to physically see a doctor). At least now I can get in for certain things if needed, so I am going to try and get in and see him as soon as I can.

In the meantime, I am just puttering around waiting for things to happen. There was no point getting a job for a month as I won’t be able to continue it if I am in Halifax two days a week (weekdays at that) and home the rest of the time. I still have a bit left over from my last student loan so I am just making it last as long as I can while I wait for the next (new?) loan on September 5th. Oh, and I have been designing some stickers for my Redbubble store.

I’ve always liked to draw and doodle so I am teaching myself how to doodle digitally on my tablet. The designs are also available on a lot of other merchandise as well. So if you’d like to support me and help me keep Life With Kadie (and this blog) going this is a great way to do it. Right now I just have the four doodles but I plan to make a few more today. Hopefully, I will improve some as I go. Pen control on the tablet I have seems so different from pen on paper, at least to me it does, am I the only one that thinks this? I am completely new to drawing digitally and don’t have the best equipment but wanted to try with what I have before I commit to anything more expensive.

Why the “Spoon Theory” just doesn’t work for me

I used to think the Spoon Theory was a great way to explain to healthy friends, family, and co-workers what it was like living with a chronic illness, chronic pain and/or chronic fatigue. However lately I feel less and less like this theory makes sense to me. I can understand the theory and get why some people would associate with it as a way to explain what day to day life is like for them and how chronic illness, chronic pain and/or chronic fatigue affects them. For me though, I find it is just making less and less sense as time goes by and as I really think about it, it just doesn’t seem to work for me.

Why? Well, first off though I get that by setting the 12 spoons a day is just a way to measure on average how many spoons you will get each day. Setting an average just doesn’t make sense to me, my life has taken a turn that seems anything but average to me. Every step and every day is an unknown for me most of the time. Not always bad, but just unpredictable to say the least. Setting a definitive number of “spoons” per day just doesn’t work on so many levels. For one, I never start the day with a specific number of spoons. Some days I could wake up with 20, other days I could wake up with 2.

I know this is kind of explained in the theory as that overdoing it one day uses too many spoons and therefore you wake up the next morning with fewer spoons. As well as sleeping poorly can take aways spoons, missing medication, or skipping a meal, etc. One would look at that and say it does make sense, but here’s why it doesn’t. I have had sleepless nights where I wake up the next day and function at a higher level then nights I get a decent sleep or vice versa. I will give them the missing medication one, that’s pretty predictable for me, missing medication usually equates to a “spoon” or two missing. I guess in theory the same could be said about getting a cold.

However, as far as every day, day-to-day activities go. I never know how many spoons they will take from me or even give to me. Taking a shower for example. One day taking a shower is a big task that will eat up pretty much all my “spoons” no matter how many I am given. Other days in contrast taking a shower will pep me up and give me more energy, much like a “healthy” person. So tasks that should be low on the list of spoons take away more than tasks that should be higher, or again vice versa.

Having a day where I use up more then my “allotted spoons” doesn’t necessarily mean that I will have fewer spoons the next day either. For that reason, I find the Spoon Theory so hard to connect with and rationalize on a personal level. Some times I will have weeks or months on end that I feel great, other times I have weeks or months that are horrible every single day. Sometimes oddly enough having a cold or recovering from an illness will actually give me more energy for a while, not less.

Often I may wake up with a certain amount of spoons and for some reason for no apparent reason at all my body has just sprung a leak and all the spoons just keep disappearing without doing anything in particular and sometimes in the middle of a random day where I feel like I am on my last spoon suddenly it’s like someone with extra spoons to spare has decided to gift me a few. It is so unpredictable that it just seems to me like another label and one that just doesn’t quite fit all that well for me.

Because it is so unpredictable having a chronic illness, chronic pain and/or chronic fatigue, I find that trying to justify or rationalize it in such a way just seems almost more damaging to me, especially when it comes to trying to help others to understand the chronic illness, chronic pain and/or chronic fatigue, it sets an expectation of predictability where there just isn’t any.

While I am at it I want to take the opportunity to introduce you as well to a little side project I decided to start a while back and have been sitting on for a while well trying to figure out what I want to do with it. I decided I would like to start a stay-at-home blog about being basically for lack of a better term “housewife” where I can share things like recipes, work from home opportunities, crafts, some DIY, and more on mental health and chronic illness from a stay at home perspective beyond this blog. Something I could monetize and maybe even turn into a community with other bloggers, guest posts, etc. My hubby helped me come up with the name. Despite it having the word Canadian in it, it’s not just for Canadians, its for anyone who wants to read, join or be a part of it.

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When you needs answers…

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
  • – palpitations
  • – 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.
  • – shakiness
  • – panic attacks/anxiety
  • – depression

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.