I'm sat at the laptop trying to figure out a lot of things in my head, alas, everything is overwhelming and even I don't know what to think or do or act or anything at this point in time. I promised a sad post, because... I am going to be honest with all of you and I am quite frankly, not in a good place at all (and for me, I come out better in writing and text then I do in person and talking, hence this blog)... so for sad post warnings, here is Igor the Destroyer, attacking the insulin producing Beta cells of the immune system, thus causing type 1 diabetes. So... if you want to read some sad, read on, if you don't, then I suggest backing out not.
So, where to begin?
I finally received the letter the consultant wrote to my doctor and cc'ed me in on. It's kinda funny, I see letters like this every day at work so I partially no what to expect to be written on them or their tone, but when it is about yourself... it's a completely different kettle of fish.
So the layout is normally simple, name and address and all that, followed by diagnosis, medication/med changes, investigations (blood results mainly) and then some writing about seeing you in clinic and further description of changes and health and what will be done.
But mine... had a somewhat nasty surprise I was hoping wouldn't happen under diagnosis and... to say I am not shaken would be a lie because yet again, I am absolutely terrified about my future.
As many of you are aware, I was taken in to hospital last year due to permanent pins and needles that happened in my foot when I was severely sick with gastroenteritis. Whilst in hospital, it turns out that I had also suffered an Acute Kidney Injury (AKI) in which I was given antibiotics for an infection that had developed in my left kidney all thanks to the gastroenteritis and as my doctor on the ward said, your kidneys are the wimps of the body... if you get sick, they might go down with you. And boy, do they go down with you. Hard.
Prior to being in hospital last October, my kidney function was relatively normal... after, well, my Glomerular Filtration Rate is refusing to rise higher than 41-43... this... basically means that I am now no longer suffering with an AKI, but a Chronic Kidney Disease (CKD), stage 3B to be precise. This is because my kidney function has not returned to their functionality from the pre-event of Gastroenteritis last year... and since being in hospital, they just have not got any better. This means they are only functioning at half capacity. And that... at the age of 30, is bloody terrifying.
Don't get me wrong... all this can eventually happen to a type 1 diabetic, less likely when you have good control and more likely if control is bad but it can still happen nonetheless. It's like the neuropathy, I was not expecting that (after the years of high bloods and stress that I have had ruining said diabetes) until I was at least 40 or 50... but 30? Yes, part of my control is to blame for all of this but it isn't the main reason all this is happening to me now, it is because I had that Gastroenteritis last year... that is why neuropathy started... and that is why I now have a CKD.
Don't get me wrong... all this can eventually happen to a type 1 diabetic, less likely when you have good control and more likely if control is bad but it can still happen nonetheless. It's like the neuropathy, I was not expecting that (after the years of high bloods and stress that I have had ruining said diabetes) until I was at least 40 or 50... but 30? Yes, part of my control is to blame for all of this but it isn't the main reason all this is happening to me now, it is because I had that Gastroenteritis last year... that is why neuropathy started... and that is why I now have a CKD.
All that being said... I am still blaming myself. Even though the vast majority of the stress was not my fault and I have removed as much of that as I could possibly do from my life (which has shown in my HbA1c going down at last) but now I am wondering, if it even was enough? Or will it ever be enough? I've done what I can and I really have tried as I have got older because I would like to try and enjoy my life and live said normal life as much as possible whilst I can. Something as stupid as a severe stomach bug has brought on all these changes, not all strictly my diabetes and I think that is what is making all of this even worse for me... because I knew it would maybe happen one day but not so soon and not like this, maybe I would have had more preparation as things slowly started to deteriorate, not suddenly cos of a stupid bloody bug.
But, knowing I have CKD now has suddenly made a few of the other problems that I have developed since leaving hospital, make sense. I always thought being so out of breath all the time was related to smoking (yes, before anyone asks I do end on quitting now cos of my kidneys) but, my breath has been so so bad since coming out of hospital, even walking up the stairs can get to me way too much... turns out the build up of waste products cos lack of kidney functionality can cause this. I also cramp really badly and get bad pains in what I think is my hip joint bone and my knee and this also relates to CKD. I can only stand or walk for a short period of time before I am in agony and have to sit down. Fatigue is partially related but isn't helped by the fact I've not slept properly since hospital because they changed my antidepressant (although I am getting it back so watch this space on that).
Nonetheless, my mental health is shot. I just want to curl up and sleep and cuddle my cats and honestly, pretend none of this happening. I still have loads I need to do with my life before I even give myself the chance to rest and relax, for example, buy my bungalow to make my future life easy, for example, go to work and do my four days a week so we can live comfortably and pay bills and still enjoy life (cos I really need to enjoy life right now), kids in the future would also be nice but now I am not so sure that will be okay to do, let alone easy.
I know the Duloxitine has not been a good antidepressant for me, and maybe my outlook will be better once my Mirtazapine kicks in and I get my sleep back to normal again... but I can still feel all the niggling anxiety poking inside head comments fighting it out and I just can't keep up, I have a constant headache, I am constantly tired and worrying and scared and dear fuck, I don't want to die young, which is now my newest and biggest fear.
I'm just not happy. I am not happy at all. I thought I was invincible once upon a time, well, not invincible but I was good at bouncing back and recovering and now I am not so sure where or what I am anymore. Which is another fear that is plaguing me as well. My diabetes and my health is taking over my life and I hate it, I hate it so much. I feel like I am becoming my diabetes and that is so depressing and mortifying and not what I wanted at all. Like, I get I have to control my diabetes and stuff to live said normal and happy life... but all these things that I now have to do are starting to scare and overwhelm me and I am honestly freaking out daily because there is just so much. After next week, I have to carb count everything I eat and medicate accordingly... FOR EVERYTHING. I have to work out correction doses and other things as well for when my bloods are high. If that is not taking over my life, I don't know what is. Any strenuous activity needs to be medded properly and accounted for, so if I do anything different, constant checking to make sure things are normal. Then the number of pills and insulin jabs I have to take daily as well. Add in the amount of clinics and appointments I have to go to now (I have three coming up on Friday... that's a day of work lost). Add to all that eventually that I will have renal appointments and more blood tests as well.
At this point in time, bar taking the Candesartan tablets again and praying they preserve my kidneys, I have no idea what to do about my kidneys... as supposedly I will never get better from it. I don't know why I am saying supposedly, I learnt all this at University. I will never really recover from it. And this is where potentially more life controlling and changing things can happen and overwhelm me further. My diet may have to change for starters and some of the things I love, I may no longer be allowed to have because of kidney function. This could mean food bills get more expensive as I will only be able to have a healthy balanced diet of certain things which doesn't bode well when we eat cheap cos that is what we can afford. Obvs, I will quit smoking although that is going to be hard as its currently my stress free, peace and quiet routine so that will be a tough habit to break. I don't drink a lot anyway, but alcohol consumption when I do have it, will have to change. Hell, even lowering my salt intake may have to happen (and I love crisps so much omg). Also, if my bone pain is caused by a build up of phosphate in my blood cos of my kidneys, then I will have to reduce or remove dairy, eggs and red meat from my diet.
It's a lot to deal with. It is all too overwhelming and I feel lost and alone even though I am not alone because I have my fiance, friends and family. But it's still scary and taking over my life and I hate it all, I hate it all so much. I know it can't happen but I just want to be normal, I don't even remember what normal feels like what with being diagnosed so young.
I just want to try and make something of myself in whatever years I have... (at least 35, I hope). Like... I don't want to be known as my diabetes and my diabetes being me. I want to try and make something of myself so when I do one day go down, go blind, lose my kidney function or whatever... I've done something to be remembered for. I hope that I can write a book one day, whether its about my life or my fantasy world of Aluria, and I hope we can make it as streamers as well, because it would be nice to work doing things I love to get by, not because I need to work to survive. I hope I can manage to get some kind of work helping kids with type 1 diabetes.
I don't know, I have dreams. All I can do is just try and carry on, like I normally do... because honestly, there isn't much more I can do at this point.
I don't know, I have dreams. All I can do is just try and carry on, like I normally do... because honestly, there isn't much more I can do at this point.
