Those who don’t regularly read this blog; in a nutshell, alongside everything else that having CFSME brings, a year ago I was told that my body was hurtling towards becoming diabetic. That’s called pre-diabetes.
I had various reasons given, the main being that since having ME my sedentary lifestyle has made me obese. With the lack of exercise I’m carrying much too much extra weight and glucose isn’t being tolerated well in my body. That, GP’s said, had brought on a genetic predisposition to Type 2 Diabetes as my parents both had it diagnosed in their 70’s.
I was put on a watching brief with regular 3 month blood tests. I altered my diet and tackled Graded Exercise Therapy to increase my tolerance to exercise also.
Then, 5 months ago, after more tests including a glucose tolerance test at the hospital, I was told I was diabetic.
My scores were: normal HbA1C at 42%
Glucose Tolerance Test 9.6
Fasting Insulin Test 7.3
(these have been consistent results every time I’ve been tested)
Crucially for this story, my HbA1C has been stable at 42% each and every time I’ve been tested over the last 14 months.
I did not want to be diabetic
All through the experience the one thing I said over and over again was: “I don’t want this illness.”
or: “I can understand if I get this at 60 or 70, but this age? It’s way too young.”
“Surely this is something to do with having CFSME, it must be a biochemical link, surely.”
I also repeatedly heard myself saying something else too:
“When I was diagnosed with ME that was bad, but I’m dealing with it. When I was told this, it polaxed me, it was far, far worse than being told I have CFSME.”
I’ll think about why I made that comment more deeply than I have done, because I think it’s a curious thing to feel and say. That’s not for now, though. 🙂
It changed my ability to cope and think through CFSME
When I was told I was diabetic 5 months ago, it was a body blow.
I felt that the added pressure of something new happening in my body that needed treating aggressively. The optimism and coping mechanisms that I use to deal with my life with CFSME were in question and my confidence and forward thinking outlook faltered.
I started to view my future very differently. It was upsetting and brought me up short. I started to think of my future life in terms of a few years, not 20 years. After all, diabetes shortens people’s lives if not dealt with properly. It changes people’s quality of life too.
How can a mainly house bound person who can’t tolerate exercise do what’s needed to be healthy and diabetic?
No CFSME research into Type 2 Diabetes
I searched around for some answers from my own community. I found it enormously frustrating that no-one in the CFSME community with a handle on research had looked into whether CFSME causes diabetes or the link between the two. There’s some research about metabolic abnormalities but it doesn’t go far enough.
When a CFSME patient is faced with a diagnosis like this, there should be clinical research available to indicate what the cause may be and what the treatment options are. It’s a terrible lacking in the research base that there isn’t.
I changed my GP
I’d been thinking about changing my GP since my house move last year and this prompted me to do it.
Believe me this wasn’t an easy decision to make. My old GP’s know me, have supported me with the DWP ( providing me with letters etc. when appealing ESA and DLA) and the new doctors were an unknown.
I got everything together in a folder before I went in for my new patient check. I wrote notes so I wouldn’t forget either and I approached it as an opportunity to set out what I know about my illness and see what their approach may be.
A week of blood glucose monitoring tests
I had accepted my diabetic diagnosis but my questions still remained. I tackled this by deciding to do my own blood glucose monitoring for a week to see what it would reveal.
Because there are diabetics in my family, I had access to a blood glucose monitoring machine (BGM). I went onto the internet and downloaded a week of the charts that people use to record their blood glucose levels on a pre-meal / 2 hours post-meal basis.
For a week I did a blood glucose test before eating, recorded what I ate and then tested 2 hours afterwards.
I was looking for a pattern in the results. I also recorded the amount of exercise I was doing or whether I was feeling any ME symptoms also.
NB: I have a lot of clinical knowledge about BGM-if you are thinking about doing the same, you’ll need to do it properly and get someone with expert knowledge to help you interpret the results.
A week later I had a full set of results. I could see that my blood glucose spiked – that means increased – when I had put my body under excess physical stress. On two mornings during that week, I had to travel by foot and public transport to appointments.
During both mornings after that high level of activity, my blood glucose scores increased to 10.2 and 10.1.
On days I rested, they were as low as 6.5 and never increased more than 6.9/7.0.
One day I ate 2 chocolate bars and 3 oranges to see what happened – it spiked at 7.9 2 hours later.
To me it looked like the range and average of my scores didn’t indicate I was diabetic.
Discussion about diabetes with the new GP
In the new patient check the new GP talked about the diabetic diagnosis. She and I checked my notes, my test results and we looked at what the week’s results was indicating.
She sat back and said:
“I don’t think you are diabetic. Your HbA1C is stable and normal and has been every time you’ve been tested over the last 14 months. We look at that more than fasting glucose tests these days, it’s a more reliable result.
“People’s blood glucose does fluctuate during a day, it’s dependent on many things and can be individual from person to person.”
“You can stop doing those tests now, I think we’ve answered your questions.”
“We’ll test you again in maybe a year or so, just to be certain, but I wouldn’t advise that you are diabetic from your test results.”
In one instant, the pressure I’ve been feeling over the last 15 months lifted.
The aftermath – diet and exercise
For the last couple of weeks I’ve been letting the new news that I’m not an ME patient who is newly diabetic settle in.
One of the positive things it’s done is made me look at my diet under a very large microscope. All the lessons I’ve learned when seeing a dietician and afterwards still hold true. As a result I weigh 1 stone less than I did 15 months ago.
The exercise bit will always, always be difficult. However I plan my day around doing one main walk each day. This I do via pacing, not Graded Exercise Therapy.
I make sure it’s enjoyable, that walk can be going shopping for food or browsing my local high street or going to the park, but I do it daily, no matter how crap I feel.
Onwards and upwards…
I do think I’ll be told I’m diabetic at some point in my life, so I’m planning ahead. I know what it feels like now and what I need to do to prevent it happening if at all possible.
Let’s look at this another way though.
- 15 months ago a fasting insulin test suggested pre diabetes even though my HbA1c was normal
- Since then I’ve seen 4 different GPs and for all their primary lifestyle advice was to increase exercise for weight loss
- 1 advised going to diabetes management classes
- 1 referred me to a local exercise programme despite knowing I have CFSME
- none mentioned my limitations due to having CFSME even when I did
- none suggested that as my HbA1C was normal each time of testing, I am managing glucose normally
- the 5th ( newly qualified) GP gave me a diagnosis of non-diabetes
None of them mentioned CFSME before I did, none of them talked about it as if they could see a link between either condition, none of them worked with me as a patient to discuss those limitations and find solutions and none of them sympathised either.
This entire experience once again shows me how as a CFSME patient, you have to do all the work, research and communication to get your doctors to meet you even half way….
Copyright Lindy 2016