Hello
@Little_emz,
Hello! How thoughtful, Thank you for asking 🙂 he had the MRI yesterday. He has an appointment with the neurologist, which they have now moved to a face to face from a phone call which is much better. The scan results will be forwarded to the consultant and I’m keeping my fingers crossed that it shows something! I’m feeling better that the right steps now appear to have been taken - we have been lost in the NHS system and it’s been a bit of a battle to get to this stage.
It must be a great relief to both of you that there has now been an MRI and the NHS system has found your partner again. I can not add anything useful about what the neurologist might have to say (sorry) but I do know something about feeling lost in the system and how debilitating it can become just trying to get access to the right person and then getting that person to listen and read my medical notes thoroughly enough to properly start joining dots!
He’s still very poorly (he has gone awfully thin with not eating!) he’s managed to have a meal this evening which has been a relief. His blood sugars have been very erratic and he’s been having lots of hypos - he’s not managing to drink an awful lot either… I’ve been trying to get him to speak to the diabetic nurse for guidance with his doses of insulin - he’s quite a stubborn person and thinks he knows best ♀️ he’s not the easiest or patients!!!
But regarding lots of hypos and erratic blood sugars ...... I've seen my share of that during my first year after my surgery. In a way your partner IS correct - he does know best. If you were to spend an hour with any 5 members of this forum who are insulin dependent all in a room together and quiz them about how they each manage their D, I think you would find that apart from the commonality of being insulin dependent there would be significant variation in how they view and manage their daily living. We all experience such different points of detail; we each have very different perceptions on what seems important. [I had a very clever boss many years ago who would regularly remind us "never mind the facts, the other person's perception is the only thing that matters".] That said, sometimes it needs an external input - which might be very subtle and relatively unique or pretty obvious and just needs stating. Eg: lots of hypos means that someone has got too much insulin on board.
The rather more challenging thing about that apparently obvious statement is why! Is their background (basal) insulin still correct? Basal needs do change and the precise type of basal insulin can hugely influence how much change is appropriate as well as how many times a week, or month, or year!
Or are your partner's shorter term (bolus) insulin doses just excessive for his current circumstances. On the superficial evidence if he's not been eating as much then that would seem an obvious explanation. If he can't manage to eat more, then his meal insulin doses should be reduced. But it's not necessarily quite that simple ..... partly because if one's basal is out of kilter the bolus doses can be chasing a moving target.
Or is someone trying to "correct" excessively, perhaps from a concern or fear about not going too high? [Perception?] Then they can need external guidance / input to adjust their mental attitude about what is safer for them and also more realistic for them. So perhaps its not necessarily just a "numbers" problem in terms of counting carbs and applying some modest maths to derive a best guess at insulin doses.
All of this does mean that only the individual taking insulin can bring in their personal awareness of, for example, have they made a basic mistake in the maths? Have they over or under assessed the consequences of any activity that happened yesterday or even 2 days ago? Has today's activity not going as anticipated? [Oh yes, did I mention that physical activity can require more than 50% reduction in insulin doses - for some but not all people? And did I mention that at the most recent count there are over 40 other Factors that can affect one's blood glucose, after food eaten and insulin taken .... ?]
I am NOT saying this is an impossible conundrum. We, each individual insulin dependent diabetic person, each find our ways of managing; we interpret the circumstances individually; we have different perceptions about which factor or factors are more (or less) important today; and we each have different levels of knowledge about managing our D. We have superficially got the same tools: insulin, means of injecting and ways of measuring our BG; but there are so many different brands of insulin with different characteristics. Dosing by pen or pump. Measuring by finger-pricking and/or a host of different test meters; or with help from CGMs with varying sophistication of their different apps - plus of course how good (reliable) any one person's natural hypo awareness is. So we each find the way that seems to work OKish for us.
Meanwhile your partner has an unbearable headache and serious balance issues. Blatantly very debilitating and frightening. When I'm having a bad D day my judgement can be poor (of course I won't admit to that!) and I certainly can be ill tempered when I'm low; the last thing I need is someone questioning or challenging my meal needs or the timings of when I need to take my bolus for the forthcoming meal. Of course I'm correct! And I do know best! Or at least I do know a great deal more about the myriad of little things that might explain why today was a bad D day and even if I could assemble that inner knowledge and explain it to anyone else I don't have the will or patience to do that explaining.
Sorry this is so long. But last Wednesday you remarked:
"
but it’s been really good to reach out on here - not being diabetic myself there is so much I don’t know and I’m keen to learn (with a smiley emoji)".
That is a genuinely helpful start point; and I'm so blessed that my wife has a similar attitude (despite my sometimes dreadful behaviour). Helping me manage my D can be a thankless task for her, without the sheer complexity of it all and the downright fickleness of D - which doesn't know what the rules are, never mind that I sometimes get dressed with the wrong colour socks!
I do most sincerely hope that your partner gets some resolution from his forthcoming neuro Consult, with a workable diagnosis and thus a treatment path.
