Woe is me... whinge moan

[Rosiecarmel]

Don't mind me. I'm just feeling sorry for myself and need a long rant.

4:30am my alarm goes off. I feel rubbish, are my sugars high? Hmm 15.7 so no, that's not bad actually. Hold on, not bad?! It IS bad. My waking level should be 10mmol LESS than that. I shouldn't deal with the blurry vision, the tiredness, the waking up three times a night to pee and the God awful leg cramps in the middle of the night. Why do some people get brilliant diabetes care yet mines appalling? Why do some T2s not need medication or very little yet less than a year after diagnosis I'm on insulin. Yes there's a possibility that I'm LADA actually but it doesn't change how I feel..... At 24 this shouldn't be part of my life. I shouldn't be worrying constantly about my sugars, possible complications, what food I'm eating, what CAN I eat, why do I feel so poorly all the time... Yet here I am. Worrying about it all. Its not fair and I don't often say that.

I'm now on 22u humulin I. Im not taking my gliclazide anymore. I asked the nurse yesterday about bolus and she said she wants to try splitting my basal first. Well that's not gonna work when my dramatic spikes are after food.

I'm sick of not being listened to. I'll split my basal like a good patient and when she rings me tomorrow I'll explain that it's probably still not going to work much.

I'm sick of being so unwell all the time. I'm sick of being ******* diabetic. I never consciously let it affect my life and my work but it does. I noticed the other day I'm slower at drug calculations and my medication round is slower than it used to be. I also have less energy.

Surprisingly to people on here I'm sure, I'm actually a very happy person and I barely ever complain. "I'll be fine don't worry!" is my go to answer to any question about my health. I just seem to moan on here a lot because you guys actually understand how hard it is and what I'm going through! Sorry for the long post, I definitely needed a good moan this morning.

 

[grovesy]

Sorry you not feeling or seeing much improvement!

 

[Radders]

Sounds to me as if you have the right to moan, and if it gives you the impetus to demand the treatment you need then go girl!
I hope you get what you need to feel better very soon, you have certainly had a struggle. Keep at it.

 

[Annette]

You rant, Rosie. You've got every damn reason to, the way you've been treated. Demand that bolus insulin, now. Enough is enough. And get your notes in order for a mother of an official complaint against the lot of them. Never heard of such a load of useless (insert word here, wouldn't dare use the one in my head!).

 

[khskel]

Rant away Rosie I hope that in the end you get the treatment that you actually need.

 

[Carolg]

Just have a moan and get it all out. Sending you virtual hugs. When I worked nights, my under active thyroid was diagnosed and it was like walking through treacle. Nine o'clock was bed time,so not good for a night nurse. Memory rubbish and took longer to do anything. Don't try to rush the tasks and maybe speak to your manager if you need a bit support. Take care of yourself

 

[Stitch147]

Its always good to get it off your chest Rosie. I think that the treatment you have received has been appalling. They should have got you sorted by now. Believe me I have my own frustrations and do vent at my oh (and my cat tigga) some days. Sending you hugs. And I really hope you see an improvement soon. XXX

 

[Robin]

I'm not surprised you're moaning. I find trying to get something sorted when you're not getting the responses you need from other people you are relying on is the most frustrating thing ever. Add to that the fact that it's your health you're trying to sort, and you've got good cause to explode!
I do hope the DSN cottons on to the fact that you need to get these mealtime spikes sorted NOW.

 

[Copepod]

You're moving towards to the right treatment. Of course, it should be a quicker process. There is spme sense in getting basal doses to create a roughly flat profile, before adding bolus doses for food. However, working shifts means some odd blood sugars at 04:30 are sadly virtually inevitable. Are working a long way from home, requiring a 04:30 alarm?
Admittedly, at the moment all my working hours are between 9am and 5pm, but include most weekends, and often long stretches betwwen days off, because I work for two main employers, plus a couple of others for occasional days / weekends. This weekend, I'll be camping to look after historical en-enactors at a living history fair, then heading off for 5 hours on each Sat and Sun to provide orienteering sessions in other parks. But, I won't be too surprised if I get some odd reaadings, particularly if mead drinking is involved!

 

[Northerner]

You have every right to rant Rosie! I am utterly appalled by your lack of treatment, by the interminable and inexcusable delays in getting you on treatment that would make a difference 😡 Yes, it's better not to bring levels down too quickly, but clearly basal alone is not going to solve your problems when you eat. I see NO reason why a cautious introduction of bolus insulin shouldn't be made immediately - you are well enough informed to be able to understand what you might expect and how to monitor yourself to keep yourself safe. This seems to have turned into some bizarre lab experiment where they are ignoring that a human being is involved.

Sometimes it's good to get angry because it makes you more determined to stand your ground and demand full explanations for these delays. I hope to goodness they realise that enough is enough and get you what you need without any further delay {{{HUGS}}}

 

[Flower]

Rosie you have had such poor/non existent care since diagnosis it's no wonder you feel like you do. What on earth is wrong with all the medics/DSNs involved in your care. You are so young to be struggling against their apathy to such a worrying situation. As a positive you managed to get yourself on to insulin but you obviously need something else to deal with food spikes and adjustments to get your over all levels down.

The one thing insulin does is work very efficiently when you get the correct type and the doses for your needs so keep fighting on for that goal despite feeling so poorly and you will get there. Sending you my best wishes Rosie 🙂

 

[jusme]

I am with Northerner all the way and hoping your DSN gets it round her head tomorrow and you get to start some bolus even if it is only very small doses to start. Good luck.

jusme

 

[HOBIE]

Hi Rosie. T2 your pancreas might work 20% r 80% who knows. Have you tried Diet Tonic water for cramps. Makes you feel refreshed with a hint of lemon & from the fridge. Good luck 🙂

 

[Diabeticliberty]

I thought you were speaking to your new specialist nurse every other day. Is she now proving as bloody useless as the rest of the sorry shower that you are being forced to tolerate? Nobody in the world could or would blame you for feeling the way that you do. it really does need dealing with though and sooner rather than manyana.

 

[Amigo]

That's the most authentic and realistic post I've read from you Rosie. Time to stop being so nice with them it seems to me. You must be totally pig sick and rightly so!
I can't advise on insulin but the others will steer you right.
It's about time they gave you the right treatment and gave you your life back Rosie.

Massive best wishes from another agonising nocturnal leg cramper! x

 

[Pumper_Sue]

Hi Rosie, firstly a huge (((((((((((((((((((((((HUG)))))))))))))))))))))))))))))))))))).
Now for action please print off what you have written on here and send it to your consultant and DSN. They have to listen to you. If no response then try PALS or what ever they are called now and take it from there.

 

[AndBreathe]

OK. My T2 diagnosis was fair and square, and thus far, by comparison to others' I've had a dream ride, so my comments, on your situation, can only every be from reading, observation, and applied AB logic.

Rosie, I can wholly appreciate your frustration, and feeling rotten is very wearing. The only recent time I've had t "trudge through it" was post surgery last autumn, when I developed a very large and unpleasant haematoma that drained itself horribly. Of course that was over several weeks, and not months, but I appreciate the "when will it ever end" feelings you must be having. It seems, looking on, that you're feeling very much "one step forwards (insulin) and two steps back (apparently ineffective method/dosing)".

Could some form of compromise be to ask your DSN if you could have some rapid acting to "top up", should you have a very high post-meal? I'm thinking you might need to agrre to something like, absolutely no more than "x, y or z" units. But, that might be a way? I'm sure those who use insulin would be able to comment, or shoot my logic down in flames.

I'm sure you may have done so already, but you really do have to show her your less sunny side when you see her. I'm not talking about a full-blown tantrum (although I could understand it), but some tears and frustration would do both of you some good, probably. We all have a habit of declaring ourselves "fine, fine", when what we're screaming inside is not in the least bit fine!!. I know every time I go to the Doc, I find myself declaring myself "Very well!", then having to qualify that by describing the broken leg or whatever I've attended to talk about.

Are you at work at the moment or are you having any time off? If you're working through all of this, maybe it's time to have some time off to recover from, at the very least, these incredibly difficult few weeks? You must be close to some form of burn-out.

At the end of the day, Rosie, nothing is more important than your health. Work will still be there when you are in a better place to deal with it, and you will deal with it better to. If nobody else is willing to put you to the front of the care queue, you have to so it yourself.

Good luck with it all.

 

[Lindarose]

Rosie I really feel for you with the rotten time you're going through and I hope someone sorts out the right treatment for you asap. Glad you keep posting on here as we all want to know how you're doing and hope it's good news soon 🙂

 

[pippaandben]

First thought is do you have a Diabetes Clinic at your local hospital which you are able to access during weekday opening hours.

I know you should be referred by your GP BUT I went to my local hospital clinic and asked for information - as much as they had. At that stage I was testing but on meds which were not working. They were horrified at my readings - gave me an appointment within a week and then wrote to my GP asking for a retrospective referral ad specifying the treatment they would recommend.

I still had a fight to get onto basal/bolus regime from the mix which was an horrific experience for me. However armed with NICE regulations supplied by kind members of this forum I had the knowledge to fight my corner. They even tried to tell me that Levermir was being withdrawn for all in the area and I would have to go to lantus. Again NICE regulations armed me to fight the practice manager and after no ruling for 2 weeks the DSN renewed my prescription saying we will see what happens now - and nothing did then or since.

Hopefully someone will be able to post the reference for those NICE regs. for you

 

[Ralph-YK]

{*hugs*}