What a Difference a Day Makes!

You know the old song "What a Diff'rence a Day Makes!" ? Well, with M.E., it certainly does, doesn't it?

My last post was talking about my new Insulin Pump and trying a little very gentle Pilates? Well, this is my day to go down to the local Nature Therapy Gardens for a gentle Pilates session. The one with the VERY gentle understanding instructor who has recovered from an M.E.-like illness? Since I started this last month I've managed to keep going each week, accompanied by my cousin. Not long, I know. Little goals, little successes (lots of recovery and mini-crashes, too, tbh!) Today I've had to text her to confess I'm just too poorly to walk down there, let alone do the session to any level at all.

What a difference a day makes. Today it was all I could do to get out of bed and dress myself, I was in so much pain, so weak and wobbly, glands swollen, head banging. Today I can hardly balance sitting down, let alone spreadeagled on an exercise mat! Not quite ready for a consistent performance in the Paralympics, yet, then!

My blood sugar was ticking along in the normal range with my pump doing its stuff most of the time this week. But like I said, it can't yet replace your pancreas completely! Or work miracles! Much as I'm fond of my little Humphrey Pump-hrey and his amazing 24/7 basal rates!

I was making a meal of blueberries, cottage cheese and pineapple last evening. Being one of those people who likes to do a bit of spontaneous juggling in the kitchen, I'd decided on the ingredients to hand, and the carbohydrates involved. I'd done the diabetic maths. Then half way through the process, having set my pump off to give me a multi-wave bolus gradually over 30 minutes, I suddenly decided to warm the blueberries up and add some gelatine I had in the back of the cupboard to make them into jelly.

No immediate problem, but I then realised I needed to cool them and wait a while before marrying them to the pineapple cottage cheese. So, inevitably, while concentrating on each part of this process, resting in between, getting brain-fog and having to check and redo things etc, I ended up very slightly hypo (low blood sugar) by the time I settled down to eat. That was soon corrected, but then comes the inevitable spike afterwards as my body later freaks out that "an error has occurred." My liver squirts out an inappropriate amount of glycogen to compensate (in spite of the fact I'd already dealt with that blip earlier).

As I'm already on a bad few days with M.E. symptoms, alternately feverish and shivering (had to snap myself out of putting the heating on yesterday - it's still August, for goodness' sake!), I'm now struggling to get my sugars back into range. Several correction boluses later, and now on an elevated TBR (temporary basal rate), I'm still in double figures. I'm starting to recognise this pattern after any inadvertent overdo!

It won't last. I'll be back to "normal" as soon as I possibly can. But the fact remains that in the uncertain world of autoimmune diseases like M.E. and Type 1 Diabetes, nothing can be taken for granted. There are no quick fixes or perfectly balanced equations. No matter what textbooks, quacks or know-it-alls will tell you! Anecdotal is just that. We're all our own quirky anecdotes! Nothing's guaranteed, just a lot of patient trial and error and learning your own limits and challenges, helps and solutions (oh - and some screaming and throwing things, if preferred!)

Today will mostly be a rest day. I have friends coming from a long distance to have lunch with me tomorrow, which I want to try and be at my best for, naturally, so we can all enjoy. Lunch will be out, no cooking or juggling. I need a clear head for a meeting at the weekend too.

Hope if you're reading this, you're being good to yourself. Not expecting too much or too little of yourself. Not beating yourself up about things you have no control over. Not thinking that frustrations today won't be useful learning experiences, or even a cause of laughs tomorrow! Not letting things lost keep you from looking forward to tomorrow, no matter how uncertain it seems through this end of the telescope!

What a difference a day makes! Shares can go up as well as down!

Pumping, Pilates and Pffffffffffffffffffffffffffffffft!

I am SO sorry for the long gap in bloggery since mid April. Some days earlier in the year, it was all I could do to read and retain the last few words in my brain-fogged brain, let alone write!

Thank you so much for sticking with me and continuing to follow.

I'm more touched and grateful than I can say for your interest and patience here.

As many of you know all too well, M.E. is a fluctuating illness.
One day, coping. Next day, crashed.
One day, doing to the point of overdo. Next day, unable to raise your head from the pillow.

Combined, in my case, with Type 1 diabetes, I find my blood sugar often acts as a thermometer of how M.E. is bamboozling my body. The past months have helped me put this in focus in several ways. Struggling, but learning every day, for which I'm profoundly thankful (when I'm not gritting my teeth and screaming hoarsely at the sheer frustration of functioning at less-than-optimal level so much of the time!)

My cardiac arrhythmia, uncovered at the end of last year, after several particularly severe hypoglycemic episodes, is now being tackled with a 2.5 mg daily dose of Bisoprolol. That doesn't mean it's been cured or fully controlled. I can go for longer symptom free at the moment, at least. Then other days, my heart is glugging and giggling through my ribs for no obvious reason. I'm learning to live with it, but don't enjoy the sensation! The cardiologist seemed quite open to the idea that this might be related to M.E./POTS/OI, but the GP seems now to be denying the ectopic beats the cardio clearly picked up and mentioned (but didn't write in my records, apparently!)

After 28 years of Type 1, my diabetes consultant asked if I had ever considered an insulin pump. Considered it? No way could I ever afford it, without the NHS. Only a tiny percentage of UK Type 1s are pumpers. Fewer than in the USA or mainland Europe. Having tried everything to achieve good control, my glucose levels still plummet to dangerous low levels or soar to ludicrous highs with no apparent provocation. Although I'd always been less than enamoured by the idea of being attached to a pump 24/7, I finally jumped at the chance to try it. I haven't regretted it for a second in this first two months of pumping. Nothing ventured, nothing gained, in my book.

Humphrey Pump-hrey - the new "man" in my life!

The insulin pump has helped me to see exactly how things affect my sugar levels. The pump releases minute personalised amounts of basal insulin (as little as .1 unit divided into 20 doses every three minutes over an hour day and night) and exact bolus amounts to suit carbohydrate intake through the day. As I'm learning to tweak these amounts to suit my lifestyle, I've very quickly seen the truth. My control can be near perfect and exact, until I do something overtaxingly aerobic, or requiring lots of brainwork, or physical effort. Then, up to 12 hours or a day or so later, my blood glucose will rise as much as 9-10 mm/ol in a matter of a couple of hours. It can go from mid-range of normal (6) to dangerously hypoglycemic (16) with no carbohydrate consumed or other factors present. Equally it will sometimes stay impossibly low (1.9-2.8) without provocation and unresponsive to dextrose, sugar or jelly babies galore. M.E. raising it's ugly head.

...and introducing Rita the Glucometer Maid. Acts as insulin pump hand set, via bluetooth and  as an inveterate nag when glucose low or high!

Because of being able to keep an even closer eye on insulin effect, carbohydrate effects and glucose profiles, I can appreciate the real effect of exercise. My daily results show clearly the way physical and mental effort and subsequent exhaustion is expressed by my immune system etc pushing up my sugar levels (instead of dropping them, as exercise should in a normal body). Although this can be erratic, I hope bit by bit to be able to learn to tackle these effects in order to maintain better control than ever. Perhaps along the way, I can help professional health workers to understand more of the realities of M.E. and its effects on other conditions like Type 1 Diabetes. After all, Type 1 is another autoimmune disease, and autoimmune diseases often flock together like birds of a feather.

No - can't manage much but simple balancing & stretching yet!

More recently, quite by accident, I heard about a very local, very gentle over-50s Pilates group led by a lass who has had an M.E.-like illness herself, and is currently in remission. I went to the first session purely to give moral support to my cousin who wanted to give it a whirl. Because the instructress is so aware of my limitations (and those of others in the class with conditions ranging from  fibromyalgia, multiple chemical sensitivity, IBS, and arthritis to rheumatism) I have been able to continue with the classes on my better days.

 Sometimes I try to push on beyond my limits. I push MYSELF that is. She doesn't push me! I pay for it, of course. The instructor gently reminds me that pushing myself is not the right thing to do. She often steps in subtly and discreetly to make things more achievable when she notices me, or anyone, struggling. She always encourages me to rest and do less, not more! Slowly, I'm learning to pace myself in this. There are many times in the year I would not even be well enough to get there, let alone participate at any level. But I am trying, in these warmer summer days, and I am glad of it. My blood sugars don't protest and they remain level when I keep within my own very strict limitations.

I've found that my diabetic control doesn't suffer so much with this controlled, non-aerobic exercise. But two minutes of gardening, concentrating to read, carrying shopping or even the short journey down to the class can have a far worse effect, catapulting me into ketone-high hyperglycemia territory and leaving me wrecked for days.

That sums up where I am at the moment, then: Pumping, Pilates and (very often) Pffffffffffffft! Totally zonked.
But I'm just thankful to do what little I can, whenever I can, if I can, while I can.

If you have days when you feel you can do more, why not give yourself a big hug and allow yourself to feel thankful, exhilarated and proud of what you CAN achieve in spite of this flipping illness?

But when you have days, like I do, when nothing seems to be achieved, when it's one step forward and umpteen steps back, please don't beat yourself up. Don't be hard on yourself.
IT'S NOT YOUR FAULT!
My blood sugars show none of this is in my head. None of this is down to bad attitude, faulty illness beliefs, laziness, choice or weakness.
It's not in your head either.
Find what helps you to thrive and enjoy whatever part of it you can.
Don't let the nay-sayers win by dragging you down.
We have M.E. and often other disabling illnesses too trying to poop on our dreams. But M.E. can never have us. M.E. can never define us or limit who we are. Not now and not ever!