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.

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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Taking control back

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Some days I really feel like a miserable failure at controlling my diabetes! Being sick the last few weeks with a bad infection and having to go on antibiotics, steroids and anti-inflammatories have really taken a toll on my blood sugar. Before all this, I was starting to get some control back. I was doing good enough that I was down to 10 units of long-acting insulin at night after starting Glumetza. I was told at that point that if I could get down to 10 units and maintain an A1C within range of 5.6 to 6 then I could come off the insulin altogether and I did it!

Now though my Freestyle Libre is now estimating my AIC to be in the 7.9 range and climbing. It’s amazing how one infection over a 2 week period can throw everything off so much. I have to admit that even before getting sick I was starting to slip. I had switched from using my Libre reader to the new android app using my phone and NFC as it uploads directly to Libreview cutting out some extra steps. At some point, I stopped bothering to scan and was only doing it once a day instead of at least every 8 hours as needed to capture 100% of the data and get all the proper charts and everything else. On top of that, I was missing doses of Glumetza as I would just forget to take it. So really this started before getting sick but getting sick has just made it get out of hand.

I know I need to get that control back. I just don’t have a clue how. I have been careful the last few days to ensure I am taking my Glumetza each day since I am also on a ton of other meds (5 other prescriptions at the moment, 9 in total over the last two weeks). I am really struggling though. It’s as simple as scanning my sensor to capture the data. I don’t know why that’s so hard to remember. I am not using my glucometer at all either. I haven’t pricked my fingers at all in weeks to even see if the Libre is working correctly beyond one finger prick when inserting a new sensor.

So overall my control has become very poor again and to make matters worse today I find out my new drug plan does not cover Glumetza at all in either its brand name or generic forms and so I am now going to have to either go back on insulin, or switch back to Metformin, which was causing major stomach issues, or be switched to something else altogether. I guess it means going back to the table and re-looking at everything. I can not afford $114 every three months for it. So something will have to give. Maybe going back in insulin is the best thing? I mean at least it would allow me more control, right?

I know I can’t beat myself up too much about the actual numbers right now as first Prednisone and then Dexamethasone has really raised them through no fault of my own, not to mention the other meds. But I really need to be scanning my sensor at least every 8 hours or even better, before and an hour or two after meals and double-checking a bit more often with test strips. I can’t even remember the last time I bought any test strips. I have been on the same pack for almost a year. I have a ton of needles, lancets, test strips all just lying around not being used. I got a little too comfy with the Libre and not looking beyond the AIC to the actual numbers.

I don’t even want to talk about meals… right no I am on a soft food diet and have been for 2 weeks and will be another 1-2 weeks most likely. So I am really struggling cause it is all carbs, starches and sugary stuff. Even though I know it doesn’t have to be I just don’t have the energy to cook and have been so sick that I am unable to stand for any periods of time and so I am eating ready-made sugary things which is not helping at all. I can’t even stand up long enough to do a couple of dishes so cooking is out of the question.

Once all this stuff is over with my tooth, jaw, and face I am really really going to need to take back some control and once I am feeling better start figuring out some meal prep once I am back to work. All stuff I needed to do anyways since I royally suck at it. I suppose I should give myself a break and chalk this all up getting so out of hand to being ill but I kind of feel like a failure anyways and it’s bugging me so much and making me really frustrated and mad.