I feel awake! That is a new feeling

I am not tired. Well I am at this precise moment but that is because I worked a full shift today and it is time for bed. In general though, not so much. To say that is a big deal for me because of my endocrine problems, all of which cause tiredness. The biggest guilty party is of course my underactive thyroid. It is another piece of my body guilty for not producing all the hormones I need and so means I have to replace them manually. 75mg tablets are apparently too much of a hassle to manufacture so I take two pills a day to make up for that tiny gland of fun. Seriously though, that whole idea of not being tired is weird. I feel more awake these days than I have in about ten.

My thyroid packed in way before anyone realised. It just happened that when I was nineteen it got way worse and more tests were done. Basically I got prodded with even more needles. I was the odd one, of course as I always am when it comes to my health, in that the levels showing on the tests never reached what should be termed a diagnosis but after a lot of arguing Doctors realised I had the symptoms. I had the disease. I was just one of the rare ones that has it hide on the blood work. With caution and a lot of angry emails from my endocrinologist, who happens to be a specialist in thyroidism in diabetics, my GP prescribed me tablets. I spent the next six months as a pin cushion lab rat as they watched the THS and whatever else levels and the amount of levothyroxin tablets I was taken and then of course how I was as a human. Awake was the word I like to use.

It was like coming out of a haze. After needing 13 or 14 hours sleep I now ‘only’ needed 12 or 11! Sure when I was awake I was too ill to do anything but STILL. I was UP. It was a really big deal. After the first six months my levels settled. To give me any more of my medication would make me ‘overactive’ and cause all sorts of other problems so I now manage things the best that I can. For a couple of years I did need that 11 or 12 hours sleep and then slowly it became 10 and since I started uni again in January 2015 I battled it down to 9 by May and now I am back to needing 8 hours sleep before work. On my days off I take the 9 or 10 but I find that the balance works for me right now.

To go to work on the average amount of sleep is huge for me. It is something I never thought I would be able to do again. I really thought that I would always need around the 10 hour mark to function properly and I accepted I would give up free time to work. To have these extended hours when I come home at night is amazing. Sure I travel an hour in and an hour back but don’t most? I feel normal. I thought my contract would be 15 hours but it turns out to be zero hours and most weeks I hit at least 30 and yet I am managing. Blinking burning eyes from four pm and barely finding the strength to get dressed have transformed to a woman reading the history of the Celts to and from work and not getting in till near eight. It is quite the transformation. It is like a phoenix rising that I have tattooed on my arm.

I do like my job. It can be stressful when there is a busload of small children that don’t have enough money for their goods but also rewarding when I’m laughing in the stockroom with my girls or spending time making a display look good. I love to hear people gushing about how they enjoyed their day, even if I’m still one of the ones that would rather hear them talk than prod a conversation. I used to worry about ending up in hospital if my insulin did not work or never being able to work because I was so tired. Now I worry that there is no soft toys being sent up and if out partner C is ok, given we are all hassling them to get the stock to us faster.

That is a pretty good life to be to be honest.

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It is very hard for me to say I’m not fine…because most of the time I’m not fine.

Some will think that weird as I mention being unwell a lot.

I wake up feeling nauseous. Every morning. Every morning of every single day. This has happened since I was about 11. Most of the time I do not think about it and some days are a whole lot better than others but I started thinking about it recently and it is really damn sad. Even when my blood sugar is perfect, I’m not tired and my endometriosis is settled with no other bugs in the way I still wake up with that wishywashy feeling in my tum. I know why. It is the Dawn Phenomenon.

Literally it means irregular rises in blood sugar in diabetics typically between 2 and 8am. For me I know it starts at precisely 4.15am every morning and lasts until around 10am. That is what 24 hour blood tests will tell you. It is the reason I have my insulin pump so that my machine can increase the loads of insulin my tiny fractions throughout this time period and keep my blood sugar level stable. It was impossible to do that with injections. It would take dozens of injections within the same time frame to even attempt to mimic the action’s of the pumps in most extreme cases. Some manage with injections but not me. No one knows why it happens or why it happens to some and not others but at quarter past 4 in the morning something in my body says ‘right, being chased by lions chaps. Time to release all the glucose and adrenaline and other stuff for outrunning large predators’. Now I have it, it will not ever go away.

After years of living with this unpreventable complication of my disease, I now realise it is the reason behind my constant nausea. My body fights a war with itself every morning before I even get up which starts off my day until near lunch. The consequence is my washing machine belly. I say I don’t feel hangovers. Maybe I just don’t notice them over my usual crap. The constant battles my body goes through to exist (let’s not start on the million miles an hour my brains at to hold the depression and anxiety disorders at bay), mean the slightest poke of a bug and I’m flat out. I’m being bitterly reminded now I’m back at university and working that all it takes is exposure to, well, anything for a few hours and I will come down with the worst possible variation of something and take twice as long to fight it off. A bonus of not being able to leave the house much for three years was less exposure to illness.

It gets mentally exhausting and frustrating and yeah I get angry. I deal with so much crap, how dare I get a 24 hour sickness bug from a work environment too? Don’t I deal with enough? I can’t even be ill like a healthy person because my diabetes freaks out and releases even more adrenaline and glucose and poisonous ketones. Most people eat when they are being sick to keep their strengths up. I do it because if I don’t I could go into ketoacidosis and you know, die within hours. ‘So much hate’ takes on a new meaning. Seriously though, imagine waking up in the morning and trying to decide if how sick you feel is ‘normal feeling sick’ or ‘that bug I have sick’. I don’t talk about it because no one gets it and no one tends to want to, really. I get ‘hmms’ and ‘wow that sucks’ and really when it comes down to it there is not much else anyone can offer. Mum still struggles to understand when I tell her I don’t want breakfast yet because I still feel sick. Breakfast should be awesome. It should be bacon and eggs and buns and toast and cereal and porridge and enough nutella to cause a child to bounce around for hours and I get into the kitchen and my stomach turns. Lunch is my favourite because then I can eat while not feeling ill.

So, having my job right now has its unhappy points in that I have to eat breakfast to be able to do the first part of my job, which is hauling around boxes and putting out stock but it makes me feel horrible on the bus and back to ‘sick’ by the time I start. By lunch I am recovered but heck I’m lazy and it is easy to throw couscous and some veg into a tub rather than prep anything nice or walk up the hill to the canteen. Plus my social anxiety is still very wary at the idea of using the microwave or heck the kettle even though I have no idea why. Then my dinner tends to be microwaved an hour after my parent’s. Mince doesn’t microwave well by the way. I need to get more creative and more confident. Pretty sure the world won’t end if I boil some water for a pasta thing or to make a cup of tea.

I hate any sort of exercise that asks me to think about my body. This post is mostly pushed by my recent holiday to Orkney (blog to come on other blog). For a start I ate breakfast when I got up. It was tasty. My tum did not approve. Yet I said nothing because I am a fool that can’t even tell one of her best friend’s that ‘I still feel sick please no’. The only time I did was when my back gave out and my nausea doubled. She will probably read this and mentally slap me upside the head. Sorry. I was taken to a Yoga class. I was excited to see what a real one was like given my experience is single things on my Wii fit but also scared. I was glad to be up the back because I knew I would not manage all of them. My back is just…horrific. There was no way I could get it into certain poses without hurting myself and then there are my 30J breasts to consider. Some poses just don’t work with them in the way of the pose itself and others because of the weight. My breasts are somewhere between half a stone and a stone in weight, so trying to do a downward dog or a push up with that going on between my shoulders was just never going to work. I did what I could, altered what I could, and sat on my knees the rest of the time observing. I never tried to go beyond myself which in itself is a big thing for my anxiety. I would rather be the person that never tried than the person that tried and hurt themselves while knowing that would be the outcome.

However, the end part was all about jungle music and looking inward. Again, I could not. This involved lying on your back which I cannot two for the two reasons mentioned. My back hurts anyway and that weight crushes my lungs. I cannot physically incapable of taking a full breath while flat on my back. Still think big boobs are sexy? So I just sat and tried to force myself to at least straighten my back which of course put the pain in the wrong place and hurt more. I did think about my body though and was hit with a rather sudden ‘wow that hurts’. Back, tummy, head, neck, shoulders, legs. Everything is under the strain of carrying my heavy, tired and broken parts around. I’m not fat but I’m certainly not in proportion and that hurts. Literally. Luckily I’m a champion at ignoring my tendonitis until I physically limp. Not entirely sure I should be proud of that but you have to be proud of something so there.

I also became very aware of all the times I mentioned calories. I need to lose a few pounds. I’m not unhappy with the way I look but I can’t be arsed or afford a new wardrobe and every weight gain means changing all my insulin levels which means the phenomenon gets worse and I feel worse. The heavier I am the more pressure is on my back and the more it hurts. People should always do what is right for them but the fact is that my back and body struggles to move a heavier me around. I felt it getting harder but I’m slowly, yet surely, losing the pounds again and can already feel the difference. For me the mirror doesn’t matter. I know I’m pretty. Losing weight the first time made me realises I always was. Reading my feminist types books got me funny looks and scoffs but they taught me that other people’s thoughts don’t matter and I will be beautiful at any size. My back and blood sugars just cope when the me in the mirror is the smaller version. Still got a wee tum though…because you are not taking my wine. My diabetes just works better when I’m smaller. It gets more unpredictable when I’m bigger. I don’t count them for fun. I count them because life sucks if I don’t. If I go into fatty areas on my body I absorb insulin at a different rate but if I stay in the same slimmer areas I cause ‘lipo’ which is basically…fatty acidic build ups of no thank you which impact insulin absorption. I’ll never lose the scars from all the injections I had to take trying to get this disease under control at its worst but I’d prefer not to add too many more. So yeah, calories for me need to be a thing to control another thing. It is hard enough to alter my insulins to all the seasons. I really don’t need to add clothes sizing to it too and figuring out insulin numbers while nauseous? No thanks. For a laugh I will add I was a 11-12 size. You know the one I mean. I wore a 12 but some things looked big but trying to get my hips and boobs into a 10 was hysterical. Well, now I’m a 12-13. Except in Peacocks where I’m a 14 in t-shirts to avoid going LOOK AT MY BOOBS (they do that enough already), and a 16 in trousers for work. 16. What. Hips are not allowed in that store. I spent a lot of my day feeling like my trousers are falling down because they are too big, really, but knowing they won’t because my hips are too big, actually. Sigh. Cause you know, I needed that to worry about too.

I just. I joke. I bring up other things but it comes down to the fact that yeah, I feel sick most of the time. It dies down around 10 but if a ‘healthy’ person with no health conditions were to describe ‘ok’ I will never, ever, feel that. That was sure a hard thing to come to terms with. I’m always a little bit wishywashy, a little achy and a bit freaked out. My organ has failed. They call it diabetes type one. There was nothing I could do. I wish they did call it organ failure. I used to hate that idea because then people would feel sorry for me and call me weak and think I could not do things but then now I think people with other organ failures do things. They have jobs and lives and friends and social events but they also get support. They get understanding and time and help. If I could not do my job I would not have it. If I could not do my degree I would not be there. I can do these things but it is important to realise the rest of me too. My pancreas now does a fraction of what it should. My pancreas essentially sits in the left corner of my bra. They never bothered trying to work out how to replace my organ that failed until recently. They are only recently really putting the efforts in, or the money should I say. People have tried with nothing to work with. Any other organ they can do, except the brain. My organ just sits there, lolling around occasionally giving out enzymes other things need. I only have thyroidism because I’m diabetic. My diabetes makes my anxiety and depression and endometriosis far more likely. My pancreas left and took half my immune system with it and left a woman trying to pretend she is normal. Maybe if they called it organ failure more people would try and help.

I’m sick. I’m always sick. But why should I tell you I’m sick? You can’t do anything and I can’t either.