Here we go round the mulberry bush...

Landline rang this morning just after ten.

Hate landline as I don't know who it is till I pick up. So can't get myself prepared with necessary info. On landline I often end up gabbling like an idiot and forgetting what I need to say through brainfog. Plus it's usually going to be some telesales pusher who's got past the Telephone Preference Service filter.

It was the secretary at the Diabetic Eye Screening desk. Same one I rang last month after I received a letter to say I'd had an earlier letter inviting me to make an appointment at the Diabetic Clinic for screening. I hadn't had any such letter. This letter I did get, said records showed I'd not had a screening with an approved optometrist. I had; the ophthalmologist at the same hospital which the Diabetic clinic had themselves referred me to after picking up some retinal bleeds about three years ago. I've been going to this same optometrist regularly several times a year since that referral.

So I had rung a few weeks ago to ask if I needed screening as well. This same receptionist had said then that this had arisen because they had had a letter from my GP to say I'd been discharged from the Ophthalmologist back into the screening system. The bleeds had gradually healed themselves but, as I'd pointed out, I had just got a new regular appointment through for this week in Ophthalmology. The GP obviously knew of some mythical discharge letter from Ophthalmology that even they didn't know about, since they'd just called me for another regular check-up.

On Wednesday, at said check-up, I'd deliberately asked the consultant whether his tests, looking at my retina, the Optical Coherence Tomography and other tests still counted as my "diabetic eye screening" (how could it not?). But he said I still needed to see the diabetic eye screening guys. OK.

So, I dutifully stood corrected and rang the receptionist back yesterday to say their letter was right after all, and please could I make an appointment with their screening programme at the diabetic clinic again? She said she'd need to talk to the ophthalmologist's secretary, as Ophthalmology now had my notes, and she'd send me an appointment for early December.

Follow?  Me neither. But, "Patient Fully Compliant", in the words the pharmacist once wrote on a form when doing the yearly review of all my medicines. (Or "Fully Complaint" as she actually put!).

So today, this phone call from the receptionist. She apologetically explained that she had indeed spoken to the Ophthalmologist's secretary, who said that as I had an appointment in another four months with him, I did not, in fact, need to be seen by the Diabetic Eye Screening as well. That would be just doubling up all the tests. As I'd thought from the start. There's a limit to how many duplicate photos of the back of my eyes they actually want!

Confused? I began to think maybe for a change I'm the only one who isn't.
Common sense told me from the off that the Ophthalmology was doing the lot now (remember it was the Diabetic Clinic during routine annual screening that referred me there originally!)

But common sense is no match for expensive computer systems that seem unable to pass a message from one hospital department to another in the same building. Common sense is a stranger when consultants say one thing while their secretaries struggle to follow what should really be happening.

Common sense isn't worth a bean in the tide of automatic mailings, wasted phone calls, paper and time. When the GP seems to be getting paperwork that bears no relation to what's happening up the road in the various hospital departments and clinics! We wonder why there's no money in the N.H.S.!

At least after hours of waiting, the consultant found no oedema in my retina after ultrasounding it in the O.C.T., in spite of some further deterioration in my vision this time.
It's crashed me M.E.-wise but retina-wise, not doing so bad for my three decades with diabetes!
Now just waiting to hear from Cardiology...

Clockwork no batteries

Got my Cardiology appointments through the post this morning:

Echocardiogram (Cardiac Ultrasound) at 9.20am Monday 14th November. Poss 30 minutes @ Cardiology Suite, Level A.


48-Hour Monitor (Holter tape) 10.00am Monday 14th November. Poss 30 minutes - technician to apply electrodes/wires.


Requested to return so recorder can be removed 48 hours later. 


That should be the morning of Wednesday 16th November. Which just happens to be the same day as a longer standing appointment for my yearly diabetic eye screening. That's scheduled for 2.30pm (eye tests) for 3pm (appointment with ophthalmologist).


Looks like a daunting amount of exhausting stuff in a two day period, with little chance for pacing along the way. At the same time, I'm looking at it as a saving of spoons on the Wednesday. It means only one bus journey there and back to hospital, if I can co-ordinate the third floor cardio visit to be just before the ground floor opthalmology. It also means my poor long-suffering mum will only have to be shuttling back and forth on various unreliable buses to support and accompany me on the two days instead of three or four that week! 

Maybe I can find somewhere to rest in between? Maybe not - it IS a hospital after all! Lights are sickeningly bright and recent "improvements" have reduced comfy seating in some waiting areas and presented us with "convenient" touch screens to book yourself in etc that mean even more stress, co-ordination and balancing than before. 

Not sure any of the specialists I'll be seeing that week understand M.E. really; they count me as a diabetic on these occasions, and you're only allowed to be looked at as one illness at a time, in my long experience! They do their best. So shall I!


Last few weeks have hardly slept until after 5am. Alternately shivery and soaked in perspiration. Chest and arms, neck and legs hurting so much and hands all pins and needles in mornings. When I do walk, its noticeably slower that ever, like when I was first up from completely bedbound.

 
 Blood sugar in double figures much of time this last week, as if fighting virus. Some sneezing, but not much. Neck glands sore, voice very weak and tiring/painful in chest muscles to speak. Making so many mistakes when writing longhand, forgetting things, words especially when speaking.

Last weekend saw second massive unannounced hypo of the month that took me completely out. Something is changing in my hypo patterns and awareness during the hypo itself, like being awake in a nightmare, losing whole segments of consciousness while not appearing comatose to others. Possibly now I've turned 50 the oestrogen isn't oiling the wheels any more. Or more likely my liver just has no more glucagon to "dump" when my BG plummets without as much as a "here we go!"

Updates to follow, but right now, please excuse me as I get properly horizontal again in a darkened room!

HbA1c you later! Diabetes and M.E. in combo

Here's the promised update on the diabetic clinic yesterday afternoon.

Nearly an hour's wait. Not too bad, then! A nurse came specifically to tell me I would be next in to see the principle diabetic and endocrinology consultant Dr M.

I was the most compliant and least disgruntled patient in the impatient waiting area. As usual. Others were getting sarcastic and restive. As usual. So why she bothered  to come to me to do any special pleading I have no idea. Perhaps she was disarmed by my wry smile of understanding I flashed at her as she beetled in and out of the blood pressure office laden with files and test results.  I wasn't even next one in, either, as it turned out.

I could see from the boards that the other two registrars, Dr V and Dr H, the female doc I'd seen the last two times, were also seeing patients. I had seen the male registrar pop his head out the door while I was in the "weeing and weighing" curtained-off area while I was being checked in, standing on the scales with my sample bottle held in one hand.

I managed to balance without my walking stick for the duration of the short session behind the curtain. I leaned on the wall in between the weighing and measuring shenanigans. Not during, or I might have appeared to have taken off several stone in weight, or, possibly, to have smuggled in stones in my pockets. It has happened in the past, I'm sure, considering the hard time diabetics are often given, whether under or over the prescribed BMI. I'm fortunate since carb counting began to be well within the limits, even erring on too thin if I don't watch it. "You haven't got a bum at all, have you?" Unquote.

Blood pressure was a bit up, but not alarmingly. White coat syndrome, or just the strain of negotiating a draining walk and bus-ride to the hospital, already using up most of my precious M.E. energy "spoons" for the day. The overhead lights in the Outpatients Clinic are like lasers beaming mercilessly down into your eyeballs. Speaking as an ME patient. I wished I'd worn my shades. The floor was already feeling like a cakewalk by the time I was finally summoned in to Dr M's office.

He acted delighted to see me. Apparently I haven't actually seen the head honcho since 2004. He remembered me fondly. And vice versa. He's a cheerful, professional doc you can trust and also have a laugh with. He remembers me pre-M.E. diagnosis in 2006, but unlike his colleague, Dr V, he knows my GP and knows from my history that I have M.E. now complicating my Type 1 so didn't ask "Why do you use a stick?" or wonder if it was diabetic neuropathy-related.


Yesterday, for once, there was no pricking-your-feet-to-make-sure-you-can-still-feel-them or inspecting the bruised and atrophied lumpy injection sites. No stripping at all, yesterday.


It was almost a full pat-on-the-head, the lass done good day, this time, to my immense relief.


Last September, last check-up, my HbA1c result (the "lie detector" actual three month snapshot of average blood glucose control) was a perfect 6.9%.


Yesterday it was an even more delightful 6.1%, a drop of .8, which had us both beaming. I'd felt that I'm probably not quite so exact now with all the carb measuring and lo-carbing as I was then, so I certainly must be getting it. 


"You certainly HAVE cracked it," smiled Doc M.

From other things he confided, I guess I'm in a minority of those who take carb counting principles seriously on board and make them work for their diabetes. It has so transformed my diabetic control, I'm quite evangelical about it still. I know others don't find it so helpful, and the take-up for the carb counting courses and D.A.F.N.E. training, by the way Dr M spoke, seems to be very low still. Sadly. I wonder how long the Diabetic Education and Resource Centre will last in the current economic cuts?


He wants to check me in another 6 months for liver function, as this can be damaged over time by the Ibuprofen I am regularly forced to take to combat nerve and muscle pain from the M.E. Not that they really help, and not that I have ever once taken any tablet more than I feel is absolutely vital.

I confessed I had even discontinued the lunchtime Metformin dose as I'm hypo so often. Taking less insulin, while keeping it enough to cover my needs, when my sugars suddenly take on a life of their own when I'm ME crashed or sick, is always a challenge.

The frequent hypos they have tried every which way to tackle, remain. The hypo warning symptoms they struggled for over a year of experimenting to give me back, are still stubbornly absent, until I fall as low as 1.9!  Most folk, as Dr M admitted, would have been comatose before they got to that figure, or rushed off to A&E under a blanket with a glucose drip in their arm.

My retinal screening improvements delighted Dr M. If it wasn't now for the M.E., I'm a model Type 1 in many ways. A success story for the department, as they are for me, after so many idiotic diabetic clinics over the 27 years since my pancreas turned up its toes. The M.E., however, can still demolish my best efforts at good diabetic control in a second. For hours. Or days. Or months at a time.

The only cloud on the horizon, albeit a predictable one, is my cholesterol. It had been perfect all the years I was taking Simvastatin. But the same drug, as for so many others, particularly M.E. patients, seemed a suspect in so many of my side effects that, on the advice of a nurse and Dr H, I tried to go without it. It's a few months now that I've not been taking my statins. No surprise, then, that my cholesterol had climbed unchecked above the acceptable 4 into the 6 range again.


Dr M empathises, and isn't sure how it'll work, but is now trying me on the lowest dose (10mg) of Atorvastatin (Lipitor). We'll see how it goes. If that doesn't work, we'll need to think again whether the cholesterol is such an issue, balanced against the M.E. side-effects. As ever, I'm totally willing to try anything. What doesn't kill you, makes you stronger, if only in depth of experience!