What’s this blog all about?
I have type 1 diabetes. I have epilepsy.
The epilepsy is under control.
Nobody who has type 1 diabetes has it under control. 😉
For me, both of these conditions are very complicated, isolating, and have at times been extremely debilitating, to the point where I needed constant care.
Things have changed, though. I always wanted to help people. Now I can. So that’s what this blog is about.
What’s with biadepsy?
My diabetes and my epilepsy have always been tangled together. In fact, diabetes is what caused my epilepsy in the first place, and ever since they have been spinning each other out of control, like two drowning people climbing over each other desperate for air. The more unstable my blood sugars, the more unstable epilepsy would become. The more unstable my epilepsy, the more my diabetes would upheave.
For me they are not really separate conditions. They are a confused, knotted mess without a clear line between them. Anyone with type 1 diabetes knows that fluctuating blood sugar can mess with your mind and moods even if you don’t have epilepsy, and people with epilepsy will know it can mess with your physical wellbeing even if you don’t have diabetes. It’s not just one plus the other. It’s... well, it’s biadepsy.
What I hope to give
As I share my personal journey, daily life with my conditions, and my experiences facing all sorts of things, first of all I would like others to find something that resonates with them. There is nothing as validating, as liberating, or as comforting as to hear someone tell a story and feel like they are reading your mind or living in your shoes.
Casual readers with diabetes may not really appreciate what I say about epilepsy and vice versa. Each condition is a little universe, filled with complexities that are unrealistic for outsiders to understand. Each has this extensive logic and language that people on the inside know, and people on the outside can’t fathom. (A bit like Harry Potter, Pokémon, or Dungeons and Dragons. There’s one of those where my understanding is limited to stereotypes or guesses.)
Despite looking nothing like each other, I feel that the two conditions are equivalent. There’s the social stigma, ignorance during emergency situations, often-poor medical care. The constant possibility of death. Needing to abstain or be very careful about doing particular things. You’ve got the conditions for life. And most of all, the huge variation from person to person.
Also in my experience, in both cases there is much more to be gained by talking to others than from visits to a specialist.
I found this equivalence kind of surprising. After learning about the complexities of liver dumps, effects of exercise, stress, protein, climate, glucagon, fast-acting and slow-acting carbs to name a few, I thought few other diseases could be this complex. But then I had to learn about the lobes... occipital, temporal, frontal, parietal. The laundry list of seizure symptoms (déjà vu, aphasia, automatisms, myoclonic jerks...) All the medications with their crazy side effects. Trying to find the right cocktail of medications that balances seizure risk with the degree to which you turn into Gordon Ramsay, Eeyore, or Dory.
So I think it’s pretty likely that there are more diseases that are similarly insane.
I think everyone with either condition will agree that it’s hard to explain things to other people. How do you be succinct about something so complex? It’s something I spend a lot of time thinking about and I’ll share the phrases and analogies I come up with.
I’ll also post about tips and tricks and products that work for me. No endorsements. Just things I actually use a lot.
There’s one more thing. When my health collapsed, I was in more agony than I thought was humanly possible. I want to save anyone I can from going through the same thing.
This blog will contain...
fragments of the past; my personal journey
tips and tricks
products that I find helpful
experience and analysis
thoughts and musings
and just daily life with the conditions I have
... and sometimes, just stuff I need to vent about! Or get off my chest.
This blog will not contain...
- Medical advice
Seriously, please remember that this blog is about my experiences, and they may not apply to you, and may not actually be medically valid.
Do not act on anything in this blog without consulting a physician.
I call things how I see them and “tell it how it is.” I will endeavour to make things uplifting/positive where possible but sometimes you just can’t.
There are some really sad parts to my journey, and some appalling parts, and I’m not going to hide them. I think leaving them out would be a disservice to the readers who struggle with things alone.
There are people that say that type 1 diabetes doesn’t hold them back, and good for them. (Unless they are condescending about it.) I understand how it’s true in their worldview.
It’s not true in mine. Diabetes takes up a lot of time, a lot of money, and a lot of headspace. It affects decisions I make. It has to, from a pragmatic perspective; but there are also less “legitimate” reasons, such as just being sick of it all, and that’s OK.
I am not militant about any spiritual, medication, diet, or lifestyle philosophy. I’m not going to say that keto or mindfulness are the solution to everyone’s problems. I do have my opinions about what is unhealthy but if you disagree, feel free to start a discussion. I’m reasonably open-minded and have witnessed quite a few ideas initially being ridiculed and then slowly being recognised for their value.
It’s very important to have a good relationship with your illnesses, and one of my goals is to encourage this. Let’s have a laugh, let’s feel empowered and in control, let’s learn and discover and connect, let’s make the most of things. However, I’m not going to pretend that I’m happy diabetes or epilepsy entered my life. (Maybe one day I’ll reconsider. Maybe you will help me.)
Spread the word
Seriously, I’m crap at self-promotion. If you enjoy or benefit from my blog, please share it with others.
May your doses be ideal, your results good, your risks small, and your health stable.