A long introduction to a complicated situation

[She Is Complicated]

Hello everyone, I’m newly diagnosed with type 2 and have a complex health situation.

If you would allow, I will tell you as briefly as I can what I am dealing with.

I am nearly 47 years old, and a MTF transgender.

Back in 2018, I was as healthy as I have ever been, walking 20 miles across London, swimming in open water and looked really good to be honest.

Then, in that year, I over prescribed Diazepam for anxiety, which had a knock on effect on my health, as some months later I started to experience a range of symptoms that are typical side effects of this medication, as well as chronic fatigue and weakness which I would attribute to the medication.

In 2019 I learned a lot about this medication and its many problems and tapered down to 16mg from 30mg. This was the hardest thing I have ever done; for some people benzodiazepine tapering can be a multi-faceted hell and I will not say more than that right now.

Prior to and during that period, I experienced a lot of trauma and that, combined with the hellish withdrawal effects left me mostly housebound. I did venture out, but as little as possible.

Due to needing to keep a roof over my head I was already working from home running my own online consultancy business, and I was under great financial pressure due to debts to HMRC which were my fault.

I had to hold my tapering of the medication in order to keep working, as I had no job security and had at one point run out of work for 5 months.

During this period I developed a pain condition, but little did I know that by the time February 2022 came around, I would develop a pain condition that I would later understand correlated with spondylolisthesis that was found in my lower spine via an MRI.

This pain was disabling - I became truly physically disabled. Prior to this I would have described myself as chronically ill, but this was now a disability in what I felt was the true sense for me. Walking became nearly impossible and the nerve pain I experienced from my lower back down my left side into my foot and across my lower back when doing normal things was so extreme that I was prescribed dihydrocodeine.

Then I was prescribed Naproxen, which actually worked better, but I had become dependent on dihydrocodeine by then.

Over all of this time, I had resorted to food as a comfort. I ate extremely badly, ordering ice cream via Deliveroo in lockdown for example. It was out of control.

I have been morbidly obese since the start of 2020 and my last HbA1c test was in 2021, where it was not even prediabetic.

I knew my eating was bad and that it had to change for general reasons, but I was already dealing with so much that I didn’t know how to control it and if I am honest, I didn’t really try .

Things got much worse in terms of my pain condition and I eventually got a secure job after moving (which I had to do nearly alone except for my 72 year old Mother’s help).

All of 2023 has been about trying to understand the root cause of my pain and there have been discussions with my pain Doctor about central sensitisation along with the anatomical nerve impingement explaining the severity of the pain. I am due to have a second opinion that this Doctor arranged to discuss the potential for surgery in the New Year.

At the same time, on October the 7th (I remember because of what also happened on that day), I had the strangest experience with my vision; when looking at any text of any size, it was distorted like I was hallucinating. It lasted about 24 hours, then settled.

I considered going to an Opthamologist but since it went back to baseline, I didn’t.

Also, I have had a ‘floater’ in my eye for about 9 months or so.

In the summer, I started to experience an increase in my OAB and this was hard to detect because I have always urinated a lot, way too much. One night, I wet the bed. Because of my back condition, I was terrified this was cauda equina syndrome, a complication of nerve impingement in the spine.

Subsequently I went to Urology and they found nothing.


Because of all the medication I am on and because of the great pain I am in so often (95% housebound) I suffer from great fatigue. As I said earlier, this came of its own accord some years ago, but events and the strain of working while so unwell and all the rest just made the fatigue multifaceted.

I started to notice that the time I spent sleeping in the day (lunch break sleeping in my bed at home) started to get longer in the Autumn; often I have struggled to get up from these naps due to the ‘crash’ being so huge, but it was getting worse.

Also, I started to realise my thirst was out of control, really really bad and of course, this made my OAB much worse too.

Then a bomb dropped at work in relation to something I won’t get into, but it took up all of December working out how to deal with it. Truly epic stress.

My GP surgery has been terrible when it comes to the above and would not recognise that I am disabled (despite not being able to walk more than 50 meters without a crutch) until my pain Doctor wrote confirming that I am disabled. So much happened with the GP surgery that I will leave it there, though I do think I need to change GP now, and complain.
In the middle of December, I got a text message from a Doctor at the GP surgery saying

1. I had an increase in my liver ALT (had low level fatty liver disease for 2-3 years) that required that I be referred to Hepatology for more tests.
2. That the HbA1c reading I had just had was at 76 and that I needed another test to confirm that I had diabetes.

I was hugely shocked, as things were already hellish in so many ways.

I had the second blood test and was called in to see a clinical pharmacist. She said that the second HbA1c was 86.

Then my accountant fired me as I had written him a strong email telling him to do a better job. Currently talking to a new accountant and dealing with all the practical things that come with being in debt to HMRC still and repaying with my salary.

Christmas has just gone and I spent it with my Mother. She has type 2 as well, and it runs in my family (both sides of her family and I do not know anything about my Father’s genes).

I have been started on Metformin and will be booked to see an Opthamologist in the New Year.

I am upset that I didn’t get to see a Doctor as soon as this was flagged and that I received it via text, but have booked an appointment to see a GP there in the new year.

Since Christmas, I have been thinking about how to change diet, as it’s not just a matter of eating the right meals, it’s a matter of how to; this is because I cannot often stand to cook or prepare food and frankly, I am addicted to bad food even though I get the right food in me as well. It’s become a big eating disorder really.

I know that exercise is recommended, but I can hardly do any; maybe with this diagnosis I will have to find a way to do more, but my mobility is very limited now by the other conditions.

Obviously I’m scared by both the Diabetes and the liver function test and have to wait to find out more.

I’m just totally overwhelmed. If the average person has a good chance of getting their Diabetes under control, I just feel that everything is stacked against me.

I have decided to incrementally drop certain foods, starting with added sugar in coffee and desserts, as it seems unsustainable to radically change my diet and besides, if I get sugar withdrawal I may struggle when I return to work in the second week of January.

Another example of a complication I face is that I need to come off the Diazepam one day, as it is destructive to me. But coming off almost by definition means an increase in glutamate which can cause fight or flight responses in the nervous system that make diabetes worse.

If you have read this far, thank you very much. I hope I can get and give support here.

 

[Inka]

Welcome 🙂 Sorry to hear about your pain. Chronic pain is truly exhausting.

You say you can’t stand to cook, which is perfectly understandable. Have you got anything you can use to sit at and prepare food, like a low table? How able are you in standing at a cooker to cook? Could you use one of those food prep firms where everything comes ready for you to cook?

Don’t be anxious about making big changes. Small, sustained changes are good too, and you can gradually add to them.

 

[Thebearcametoo]

Hi and welcome. You’re dealing with so much and are still so young. I hope you can find a more supportive GP and come up with some pain management options.

Cutting out sugar from your coffee and being mindful of your desserts is a good start. If you want to get a meter and monitor your blood glucose that can give you a clearer idea of where you need to make changes.

You sound determined and you have a good understanding of all your medical issues so I’m confident you’ll be able to make some changes.

 

[Leadinglights]

You certainly have a lot of things to try to juggle. There are quite a few ways to ease up the preparation of suitable meals from having cooked meats, cheese, eggs and salads in the fridge to using a slow cooker where everything can be chucked in and it just gets on with it. Making large batches of meals so you can freeze portions so you have home made ready meals. Bags of frozen veg to use in stir fry meals. The foods to cut down on are those high carb potatoes, rice, pasta, bread and the more obvious cakes, biscuits, pastry and sugary drinks including fruit juice. High protein yoghurts or Kvarg deserts need no preparation for puds.

 

[She Is Complicated]

Welcome 🙂 Sorry to hear about your pain. Chronic pain is truly exhausting.

You say you can’t stand to cook, which is perfectly understandable. Have you got anything you can use to sit at and prepare food, like a low table? How able are you in standing at a cooker to cook? Could you use one of those food prep firms where everything comes ready for you to cook?

Don’t be anxious about making big changes. Small, sustained changes are good too, and you can gradually add to them.

Thank you very much for your understanding. Your suggestion of sitting to prep makes sense, though I'm not good at it, so would need to learn a lot.

Not great at standing at a cooker, have to do it in small stints before sitting. Not impossible but not for sustained periods.

Have looked into some of the food prep services but am unsure which to go with, but it's definitely a possibility.

 

[She Is Complicated]

Hi and welcome. You’re dealing with so much and are still so young. I hope you can find a more supportive GP and come up with some pain management options.

Cutting out sugar from your coffee and being mindful of your desserts is a good start. If you want to get a meter and monitor your blood glucose that can give you a clearer idea of where you need to make changes.

You sound determined and you have a good understanding of all your medical issues so I’m confident you’ll be able to make some changes.

Again, thank you for the validation.

These things are a good start I hope, and I will continue to make changes; this seems better than going cold turkey from sugar and carbs, but there's a lot to cut out and change.

Do you have a monitor that you would recommend? What would I do with the information it provides?

Your confidence is comforting to me

 

[She Is Complicated]

You certainly have a lot of things to try to juggle. There are quite a few ways to ease up the preparation of suitable meals from having cooked meats, cheese, eggs and salads in the fridge to using a slow cooker where everything can be chucked in and it just gets on with it. Making large batches of meals so you can freeze portions so you have home made ready meals. Bags of frozen veg to use in stir fry meals. The foods to cut down on are those high carb potatoes, rice, pasta, bread and the more obvious cakes, biscuits, pastry and sugary drinks including fruit juice. High protein yoghurts or Kvarg deserts need no preparation for puds.

These are good piece of advice for sure.

I think that the biggest issue for me is the psychological and physiological cravings for the bad food. I think I will need some kind of extra support in this regard.

It's one thing to know what and what not to do, then there is how to do it (prep etc) and then there is resisting the feelings of wanting the bad things - that last part is really scary for me.

 

[Leadinglights]

These are good piece of advice for sure.

I think that the biggest issue for me is the psychological and physiological cravings for the bad food. I think I will need some kind of extra support in this regard.

It's one thing to know what and what not to do, then there is how to do it (prep etc) and then there is resisting the feelings of wanting the bad things - that last part is really scary for me.

You may find this link useful with some ideas for the foods which you can still have, people often imagine that some foods are off the menu when actually they may be fine and this may give you an insight into what you can have, if you think of it that way round rather than what you can't have. https://www.freshwell.co.uk/

 

[Leadinglights]

Thank you very much for your understanding. Your suggestion of sitting to prep makes sense, though I'm not good at it, so would need to learn a lot.

Not great at standing at a cooker, have to do it in small stints before sitting. Not impossible but not for sustained periods.

Have looked into some of the food prep services but am unsure which to go with, but it's definitely a possibility.

Wiltshire foods do have some low carb meals in their repertoire for delivery but also if you choose carefully some of the slimming world ready meals are not too bad and bulked out with salad or veg would be an option.

 

[She Is Complicated]

You may find this link useful with some ideas for the foods which you can still have, people often imagine that some foods are off the menu when actually they may be fine and this may give you an insight into what you can have, if you think of it that way round rather than what you can't have. https://www.freshwell.co.uk/

Great thank you I have saved that website and will study it.

 

[She Is Complicated]

Wiltshire foods do have some low carb meals in their repertoire for delivery but also if you choose carefully some of the slimming world ready meals are not too bad and bulked out with salad or veg would be an option.

Great I've got the website https://wiltshirefarmfoods.com/

 

[Inka]

Thank you very much for your understanding. Your suggestion of sitting to prep makes sense, though I'm not good at it, so would need to learn a lot.

Not great at standing at a cooker, have to do it in small stints before sitting. Not impossible but not for sustained periods.

Have looked into some of the food prep services but am unsure which to go with, but it's definitely a possibility.

You could make things simple to start with by buying salad stuff or those microwave green veg cartons or packets and accompany that with some cold cooked chicken or whatever. You can bulk up the salad by things like adding half a sliced avocado. Have a small amount of lower GI carbs with this. There are various options like rye bread (dense and filling) or ryvita or oatcakes, etc.

Think of it as a gradual change. Don’t put pressure on yourself. Build up a repertoire of meals - either ones that you make yourself or delivered ones. You’re aiming to reduce your carbs and increase your green veg and salad greens. Hopefully you’ll find it a pleasure exploring new foods or old forgotten favourites. You can still have ‘treat’ items but think about your treats in a different way, eg some fresh raspberries with plain Greek yoghurt, some free-range chicken, salmon, asparagus, or whatever you like.

 

[She Is Complicated]

You could make things simple to start with by buying salad stuff or those microwave green veg cartons or packets and accompany that with some cold cooked chicken or whatever. You can bulk up the salad by things like adding half a sliced avocado. Have a small amount of lower GI carbs with this. There are various options like rye bread (dense and filling) or ryvita or oatcakes, etc.

Think of it as a gradual change. Don’t put pressure on yourself. Build up a repertoire of meals - either ones that you make yourself or delivered ones. You’re aiming to reduce your carbs and increase your green veg and salad greens. Hopefully you’ll find it a pleasure exploring new foods or old forgotten favourites. You can still have ‘treat’ items but think about your treats in a different way, eg some fresh raspberries with plain Greek yoghurt, some free-range chicken, salmon, asparagus, or whatever you like.

That's great advice on food.

Do you think that once I have adjusted and in the event that my blood sugar levels are under control, the benefits of the lowered sugar in the blood and the healthier diet will give me a new lease of life, given the constraints I have with my other conditions? Trying to see the positives of this.

Also, with treats, my Mother is type 2 and she says that she can have a 'bad food' like cake or whatever occasionally, as long as it's very rare.

Is this true in your view? The idea of being sentenced to never have any kind of confectionary is rather hard right now.

I'm going to be tapering my diet as you say, rather than make a drastic chance, since this will be more sustainable I suspect.

 

[Inka]

A healthier diet should benefit you physically and mentally. I find when I go through a period of eating badly, I feel and look rough. A healthy diet is energising and I find it makes me feel good.

As for things like cake, yes you could have occasional cake, but I’d leave them for a while until you get your blood sugar controlled. No foods are forbidden but weighing up whether they’re worth messing up your blood sugar helps you look at things in a different light. There are also some low carb cakes you could try, but, again, I feel that might potentially sabotage your taste buds if you go for them too early.

Dark chocolate is a good treat. You could have a square or two of that as you work on your new diet. Go for the high cocoa ones, so 75% or whatever.

 

[Leadinglights]

Having blood glucose well managed and at the right level makes a difference to all sorts of conditions as high glucose affects all the cells in your body including the brain so affects mood, affects the kidneys as they are fighting to get rid of excess glucose via urine so people can become dehydrated and that affects how your body functions.

Treats should be just that, it is when the treats become the usual that is not good. But choosing your treats carefully so they are worth the carbs. If chocolate is your thing then a square not a bar of dark 70% chocolate every now and again is OK. Aldi (Moser Roth) do some good dark chocolate of various flavours.

 

[She Is Complicated]

A healthier diet should benefit you physically and mentally. I find when I go through a period of eating badly, I feel and look rough. A healthy diet is energising and I find it makes me feel good.

As for things like cake, yes you could have occasional cake, but I’d leave them for a while until you get your blood sugar controlled. No foods are forbidden but weighing up whether they’re worth messing up your blood sugar helps you look at things in a different light. There are also some low carb cakes you could try, but, again, I feel that might potentially sabotage your taste buds if you go for them too early.

Dark chocolate is a good treat. You could have a square or two of that as you work on your new diet. Go for the high cocoa ones, so 75% or whatever.

That makes a lot of sense.

Get the point about baselining good food before having a treat, but at at the same time I am habituated to eat bad food and my body craves it so much, so I will have to get rid of these foods at a sensible pace and not suddenly.

This creates a bit of a paradox, but I'll navigate it and I thank you for confirming that it will give net benefits.

 

[She Is Complicated]

Having blood glucose well managed and at the right level makes a difference to all sorts of conditions as high glucose affects all the cells in your body including the brain so affects mood, affects the kidneys as they are fighting to get rid of excess glucose via urine so people can become dehydrated and that affects how your body functions.

Treats should be just that, it is when the treats become the usual that is not good. But choosing your treats carefully so they are worth the carbs. If chocolate is your thing then a square not a bar of dark 70% chocolate every now and again is OK. Aldi (Moser Roth) do some good dark chocolate of various flavours.

Again thank you for confirming the net benefits of getting blood glucose under control.

At the same time, the idea that in the future, all I can have as a treat, ever, is a single square of dark chocolate doesn't seem realistic.

As you said, it's when the bad food becomes the norm rather than the exception that it would be a problem.

Not being able, ever, to eat normal chocolate ice cream in my whole life seems a bit extreme.

Surely you know more than I do, but my Mother has been type 2 for 20 years and said that 'bad food x' is fine as long as it's occasional.

 

[Leadinglights]

Again thank you for confirming the net benefits of getting blood glucose under control.

At the same time, the idea that in the future, all I can have as a treat, ever, is a single square of dark chocolate doesn't seem realistic.

As you said, it's when the bad food becomes the norm rather than the exception that it would be a problem.

Not being able, ever, to eat normal chocolate ice cream in my whole life seems a bit extreme.

Surely you know more than I do, but my Mother has been type 2 for 20 years and said that 'bad food x' is fine as long as it's occasional.

Sometimes it is a matter of balance and deciding what carbs are worth it, If you want chocolate ice cream then you may need to have less carbs, for lunch or dinner to compensate.
Once you start to reduce the amount of sweet things you have your tastes change and many of the foods that you thought were OK will taste far too sweet.
When I was in hospital the food was pretty dreadful, not at all suitable for low carb and I chose a chocolate éclair for desert but had to scrape off the chocolate as it was far too sweet.

 

[She Is Complicated]

Sometimes it is a matter of balance and deciding what carbs are worth it, If you want chocolate ice cream then you may need to have less carbs, for lunch or dinner to compensate.
Once you start to reduce the amount of sweet things you have your tastes change and many of the foods that you thought were OK will taste far too sweet.
When I was in hospital the food was pretty dreadful, not at all suitable for low carb and I chose a chocolate éclair for desert but had to scrape off the chocolate as it was far too sweet.

I really hope that I will change my taste so that the things I like now are too much. Did you have a sweet tooth all of your life or at all?

If I did not have to function, I would go on a sugar cold turkey perhaps, but as it is it will take me a bit of time to get to the point you were at and so on.

What you say about planning and compensating for treats does make sense.

However, is it so terrible for blood sugar to spike once or twice a year for example? It's all new to me.

 

[Inka]

No, one or twice a year would be fine. It’s up to you. If you can get control and get your sugars in range, then an occasional treat is fine. You can compensate by eating less carbs the rest of the day, or you can ‘work off’ the extra carbs with activity (I appreciate this is difficult for you).

You might also find that your sweet tooth reduces a bit once you’ve got your blood sugar better. High blood sugar can cause hunger and cravings for sweet things.