I feel like I’ve lost all control

This is not necessarily only about diabetes but my depression and anxiety too, that being said diabetes is such a frustrating disease! Just when you feel like you are getting somewhere and you are proud of yourself something happens and it all goes to shit. I’d like to blame being at home but really I can’t, that should be one of the times I have more control, not less. I’d like to say I am eating the same things as I was when I was out working but again I can’t, I’m not. I do eat a lot of the same things. But now I have free access to everything in the fridge and the cupboards and though sometimes I am not even hungry other times I feel constantly hungry. It’s a little hard to explain, to be honest. I think honestly it’s more mental than physical.

Since childhood, I’ve always just been a creature of habit. I get into habits easily. Even if it makes no sense. I don’t get great pleasure out of food usually. I’m not huge on tastes or textures, in fact, a lot of textures turn me off. I’m sensitive to smell. I won’t eat certain food just because of the smell. When I was little I survived on Kraft dinner and bread and water. I would not eat anything else. It wasn’t until I was in my teens that I even tried pizza and then I would only eat cheese and pepperoni. I got used to some of the dishes my parents made in my pre-teens and teens such as spaghetti, sheppard’s pie, tacos, scalloped potatoes, and ham or bologna but I was very limited. No matter how much they tried I would not eat anything else.

In my teens, I started trying other things, got hooked on Pepsi and root beer, pizza, chicken nuggets, fries, and other things. Typical teen things. Again though, I would not try anything else. If my parents got Chinese I would eat plain steamed rice and soya sauce. Eventually, I took a liking to ginger beef but even now that’s the only Chinese takeout food I will eat.  I can’t handle spicy. I started eating stew in my 20’s and fajitas. Everything though I liked rather plain. I was never a fan of sauces, spices, or anything like that. Imagine eating spaghetti with nothing but margarine and maybe a little sprinkled parmesan? Or a hamburger with nothing on it. Eventually, I started adding bacon (my go-to now) but otherwise, I wouldn’t eat much. Even veggies it was simply corn, carrots, or cucumber. Greens I would only eat romaine or head lettuce. Fruits it was apples, oranges. Berries it was simply strawberry or raspberries.

Over the last few years, I have really opened up my tastes and started trying things I wouldn’t even consider before.  I had started eating more veggies and trying new ones, same with fruits and greens. I started liking more varieties of stuff and was getting more adventurous. I have never been much of a cook but Edward likes cooking. I do know how. It’s not that. I even know a lot of the recipes my parents used off by heart but I would walk him through it rather than doing it myself. I guess I had no confidence in myself and still don’t. Sometimes I think it has to do with depression and anxiety as well though. The anxiety makes it so I get overwhelmed, frustrated, and then anxious really easily. I see this a lot with every day things like cooking, cleaning, and other household chores. I also don’t like going into the grocery store alone. The selection intimidates me. Trying to turn recipes or meal ideas into a grocery list overwhelms me.

Anyway, I had been doing really good with drinking more water, only diet pop occasionally and cutting back on sweets, eating veggies and fruits and we were making (well, Eddie really) meals up ahead of time so we had leftovers and using my freestyle libra I was getting decent results with my blood sugar. Now I just seem to have lost all control. I eat what I like when I like again. I drink more diet pop or even sometimes regular rather than water. We don’t make meals up ahead of time much anymore. We don’t by veggies or fresh meat much. I guess some of that can be blamed on supply which is a little rough right now but I know that even with exercise and eating semi-decent foods I can get my sugars back under control.

Mentally though I am having a hard time rallying myself and getting things back under control. I feel a bit lost actually. In so many ways. Some of it has to do with things going on right now all around the world but it started way before this. It started about the time I stopped working. It was such a big setback to me at the time and I still haven’t quite got over it. I have things that I feel like I should be able to do easily that seem such a big struggle, like cleaning and cooking. I’ve never been big on either but I did it out of necessity. Maybe having someone else around is fostering laziness in me that was already there? Not sure.

One thing I was really proud of this past month was the fact that I lost 20lbs, but looking back on it I realized that I was kind of cheating myself because I did not lose it due to good control, healthier eating, exercising, etc., instead, I lost it because I was extremely sick at the beginning of the month (again). I didn’t want to eat anything, I wasn’t eating anything, I had constant bouts of diarrhea and slept 20 hours a day or more with whatever it was that I got. Add antibiotics to that which caused more issues and it was easy to lose 20lbs in about 3 weeks. In less then a week I have gained 5 back. So yeah, I really can’t take credit for that. One good thing though is the 20lbs lost made a big difference in my pain. So I need to grab onto that, grab onto the way it made me feel good and work on losing more, getting healthier both physically and mentally, and really concentrating on school so that this is not another missed opportunity.

Speaking of that, I have school starting in a month. I registered my courses and have my list of courses for the semester. I got my school email account all set up. I’ve been doing some prep work to ensure I don’t get stuck or lost in my courses, but not as much as I would have liked. I’ve stalled there a bit too, which scares me. I feel like my biggest issue right now is my loss of control on so many aspects of my life. So many good things, but so many bad things. Even the good are daunting and cause me anxiety. Normal, I know, even for someone without depression or anxiety. The difference is they learn to cope. At the moment I don’t feel I am. Thankfully I have a Zoom appointment with my psychologist this week on Thursday.

She is really great. She encourages my blogging and encourages me to get out and try new things and explore. I have never felt in the past that therapy has helped me much and always had rather bad experiences with it. She’s different though. I feel like I’m making breakthroughs with her. My husband and family back me up on things as well. They are super supportive. My husband sometimes though gives in because he doesn’t want to hurt my feelings or he just wants to make me happy and sometimes pushing me to eat healthily and not eat things I want feels to him like he is being mean, at the same time though he understands my health is in jeopardy so I think he struggles as well with that balance as well.

I know I will get through this, if nothing else I a stubborn as fuck. Even if I sometimes give in when the going gets tough I pick myself back up, tell myself no, I can not give in and I try again, even if it takes a while to get to that conclusion (umm… like 20 years for school, but who’s counting anyway). Again, I know I will get through this. I have support both professionally and through friends and family some of who have always been there and others who are newer but super supportive. I’ve just got to keep pushing myself outside my comfort zone and never give up and on that note, it applies to my diabetes as well. I can’t give up. If I make a mistake I need to just get up, dust off, and try again. Really use the CGM to watch for trends, watch how certain foods affect me, and find suitable alternatives that I still like and satisfy any cravings I have.

I so badly want to get everything under control. I feel better obviously when my blood sugar is in my goal range (5-10 mmol/l) and I know that the complications can be really bad if I don’t regain and keep control. I have seen it in my father and my grandmother. My mom too to a point. She’s a little better at controlling hers than my Dad and I though (yes, my mom, dad, and I are all type 2 and so was dad’s mom). It can be frustrating but at the same time, it can be interesting too. I know being able to cook and bake would be beneficial here because I can learn to change recipes to suit my needs (ie. no sugar, low carb, etc) but still satisfy my sweet tooth and still make me feel like I am not sacrificing. I just have to get better at it. Really push myself, the problem is there is so much I need to change, so much I need to improve or learn that it again seems so daunting. I am not giving up though. Never. I will always keep trying.

Things my anxiety keeps me from doing

Anxiety and therapy

I’ve been in therapy for about a month now and I am finding it really beneficial. I might write a bit more about therapy later however I wanted to do a post on something that my psychologist asked me to do the other day. I was mentioning to her that I have found over the last few years, and especially recently that my anxiety feels like a roadblock or mountain sometimes when it comes to doing certain things that either I used to love doing or that I want to try. We talked about it for a while and she asked me to make a list to bring in for my next session of things that my anxiety has either prevented me from doing or stopped me from trying and I thought it was a great idea and would also make a good blog post as well.

She knows I blog, its something I told her right up front on our first session and she was really happy to hear that I blog and she mentioned in the last session as well that she thought it would be a good idea if I wanted to post it on my blog so I can keep a record of the things as I mentioned I am at a point right now where I really want to push through some of these fears and anxieties and give these things a try again or for the first time. We both figured it would be something very therapeutic for me to not only blog the list but also blog each step of tackling the list and the results so that in years to come I can reflect back on it if needed.

I had mentioned to her about going back through some of my old posts from some of my darker times and reading them and some of the posts since then to see how far I’ve come along over the years as well as remind myself that if I have been able to overcome all this before and live a life almost without depression or anxiety for a number of years that it is possible that I might be able to get to that point again with or without medications and give me a goal to look forward to and achieve.

1. Returning to school

One of the first things I would like to tackle and actually already am in the process of doing before even deciding to make this list, but that I am going to include is going back to school. It’s something I have wanted to do for a long long time. Before Eddie and I even got together. I have been wanting to do it so bad but I have been so anxious about the application process, funding and mostly the work itself and how I would be able to handle it, that I have literally been sitting on this for over 10 years letting it fester and annoy and confuse me. Everything that happened over this past 2 months has actually been a mixed blessing in disguise and has pushed me outside my comfort zone so much that making the decision and starting the process to act on it has been almost easy

I am applying as soon as my tax return money comes in, which I filed tonight. I’ve had a bit of an issue saving up the money but then earlier today I filed our taxes and realized I will have enough to apply from it. I netfiled our taxes so we should have the money direct deposited within two weeks. My EI for the last few months has been approved as well and backdated so that should help out. I am still having a lot of anxiety over the process of applying for the student loan/line of credit and also with doing some of the other things I need to do before I apply and have been putting them off. I need to update my name on my Alberta student ID account and Revenue Canada. So these things have been getting in the way some but I am determined to get them done before the end of the week. Goals.

2. Going skiing again

I have loved skiing ever since I was about 5. We used to go all the time in Europe and in Calgary when we lived there. I have also gone here as we have a ski hill about an hour away. I so badly wanted to go this year and though finances have been a big reason for not going and time to go as well has been an obstacle I think if I am absolutely honest with myself the biggest hurdle for me has been anxiety. Mostly about the shape my body is in, and by that, I don’t mean my size. I am not worried about that what I am referring to is the pain I am always in and the fact I get hurt fairly easily.

I missed my chance this year but I want to use the summer to get into a bit better shape, again not meaning losing weight so much as just building up my strength and endurance. Losing weight would just be an added bonus at this point as I have already lost some. One of the things that terrifies me the most about skiing is falling. I remember some of the falls and just getting up and shaking it off and I am scared that I won’t be able to do that now. What if I break something or end up back on crutches again? The hip injury I had the summer before last weighs heavily on my mind and makes me anxious. I think I am scared more over the fact that I will go and not be able to do it then not trying at all. I just don’t want that type of anxiety and fear to stop me from doing the things I love or trying new things.

3. Go river tubing

One thing I have always wanted to do but have always been really anxious about doing is going tubing on the Gaspereau River. We planned it last summer but because of my anxiety we never ended up going. I love the water. I love swimming and am not scared of the water and actually I kind of technically have gone tubing this past September on the Annapolis River but not really in the way that I mean. Tubing on the Gaspereau river you actually tube down the river on the tube quite a ways. What makes me anxious the most is the same thing I really had to overcome this past fall and really didn’t resulting in a kind of hilarious fail which I am now anxious about repeating

I am absolutely terrified of spiders and this fall I participated in a community race at Ciderfest in Bridgetown where we got into tubes off of a dock in the river and then using oars had to use them to get across the river to the other side, around a buoy and back to the dock. My anxiety at doing this is so high because the docks are full of dock spiders which are huge typically and the spiders tend to crawl all over the tubes. I managed to do it and get on and go all the way around the buoy and back (in last place) but not before trying to avoid the edge of the dock and jump on the tube, which resulted in me bouncing off it and landing in the frigid water in my clothes (it was the middle of September, a rather cold one at that).

Tubing the Gaspereau would be different and I am not really sure where we would get on the tubes and if there would be lots of spiders, but it still makes me so anxious just thinking about it, however, I can’t get it out of my mind and want to do it so bad. I am a bit scared and anxious about the water as well, I am told it is gentle but very murky and muddy which the Annapolis River was as well and I didn’t like that part much. I am absolutely determined I am going to do it.

4. Horseback riding

I used to horseback ride when I was younger and we lived in Germany and I enjoyed being around horses when we lived in Calgary though I didn’t ride as much, mostly just going to horse shows at Spruce Meadows. I really have been wanting to go horseback riding again. I would love to go on a trail ride. As much as it is something I really want to do anxiety (and weight) has kept me from doing it. Again it comes back to being anxious about failing, about not being able to get onto the horse or even worse falling off it Even though I am so much bigger (as in from a child to adult) then I was when I was a kid for some reason now horses seem so much bigger to me now then they did then. I am also anxious about getting kicked or hurt or stepped on. I am not sure my exact weight right now but I will have to look into finding places around to ride and see what their weight limit is and set it as a goal over the summer and maybe try and go riding in the fall.

5. Mud sliding

One thing Nova Scotia is known for is our tides and our sense of adventure and fun. Ever since I can remember, ever since I was a kid visiting here from other places, I have always wanted to go mud sliding. One of the best places to go is the Shubenacadie River. The tidal bores are pretty unique and when the tide goes out the muddy river banks make perfect places to go mud sliding. This is something I really want to do but at the same time, it really fills me with anxiety for a few reasons. The first one’s kind of dumb but basically I am anxious about ruining my clothes, the mud stains. Just wear old clothes right? Easy enough, except it still fills me with anxiety, I have no idea why. Secondly and a bit more of an actual problem is unless you do a full zodiak tidal bore tour and mud slide with them then really you have no access to a shower and well you need a car to get there and I have a brand new car (2019) and my anxiety goes through the roof when I think of all the mud in my car.

Obviously even someone without anxiety would feel the same but there is more to it than just the car and clothes. I am anxious about the tides even though I know you have to time it right and it’s not actually an issue but in my mind it is. I also am anxious about sliding down the bank and into a river that I might not know how deep it is or how fast-flowing, etc. Again, it’s not really an issue because you would not just go anywhere. You would go in certain places where everyone goes and you likely would not be alone as on a hot day the place would have tons of people, which for me causes some anxiety in itself. The whole bathing suit in public thing. Last year couldn’t care less but lately, I am getting more and more self-conscious at the idea which is weird because I never used to be.

No matter what I am determined that I am going to accomplish these things over the next year or two. I really feel like the only way to overcome the anxiety and fears is to confront it head-on and jump in feet first, carefully and safely obviously but still, just do it. Now, I’m at risk of sounding like a Nike commercial

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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.