In September last year a set of routine blood tests carried out by my GP told me something that I literally did not see coming: I was at risk of developing Type 2 Diabetes.
Before ME diagnosis – A OK – blood glucose normal. 2 years in to having ME – this!
The blood tests were a routine screen. They happened because my GP decided it would be an idea to do a work-up. I asked about re-testing following a startingly high cholesterol test of 7.9 I’d had in the year I first fell ill with ME.
Yes, I’d asked about re-testing. I remembered about it, not my GP. Hmmm!
If I hadn’t asked it wouldn’t have happened. My GP seemed rather surprised that I’d had the high cholesterol result and had to check his computer to verify what I was suggesting.
“Oh yes,” he said. “So you have. OK,” he added rubbing his hands together, “Let’s do a full work up. We’ll check for everything we can. Book yourself in with an appointment with the nurse.”
Having high cholesterol is bad for you. It signifies that you might be doing things that are bringing that about too, because your (bad) cholesterol count is linked with diet and lifestyle.
I also had to starve myself for a fasting glucose test – this was to check how sugars and insulin was being handled by my body.
When I returned to the surgery to see a different GP they had a look on their face that immediately said I was about to hear something I hadn’t heard before.
“Your cholesterol is still higher than we’d like, but it’s less than 7.9. It’s now 7.1, so that’s good. However your fasting insulin test has come back with a 6.9.”
He scanned my face for a second while I desperately fought back through opaque layers of brain fog to call on knowledge from teaching Blood Glucose Monitoring. Brain Fog pushed back. I had a memory of standing in a classroom but couldn’t remember anything about the subject aside from that. Nothing.
Damn you brain fog! Damn you ME for taking my mind – memories are like a computer you keep in a spare room that no longer works and you don’t know how to fix it.
“You aren’t diabetic yet,” said the Doctor,”but this is a high score. It means you are at risk of developing Type 2 diabetes. I want to re-test you in 3 months. Can you do more exercise?”
I looked at him incredulously as I burst out in inappropriate laughter.”Um,” I scrabbled around for what I said next, “I have MECFS..” I expected him to join the dots.
“I see,” he said, “Well, if you do more exercise it will help.” I looked at him again and in the pause there was no joining-of-any-dots at all.
“Doctor, I have MECFS. I spend most of the time at home. Any exercise I do leaves me so exhausted that I have to watch what I do very carefully, which, I appreciate doesn’t help this situation but …..doing more exercise, what, like going to a gym?”
The doctor looked back at me. “It’s also something that is made worse with stress,” he added.
I looked back at him again. This time brain fog didn’t intrude on my memory. In the 2 years since I’ve had MECFS life has been enormously stressful. There’s a long list of what’s happened – my home and living on welfare benefits is one example – but having a life changing diagnosis is stressful enough on it’s own, isn’t it?
“OK,” I said slowly,”so you are saying I need to address my diet and do more exercise?”
“If you could,” he answered, as if he was suggesting that I pick up some milk for him from the corner shop I was passing.
Since that conversation In September I’ve been on a different sort of learning curve, or re-learning curve.
That, food poverty and living on welfare benefits. Triple whammy!
I also reconnected with the CFS ME Clinic
My GP didn’t offer up ME-specific information about Type 2 diabetes, so I thought that the CFS ME clinic might do.
I booked a new 1-1 assessment. In it I asked the question: “Do you have any advice for me, does ME have a specific biochemistry that leads to a risk of developing Type 2 Diabetes?”
Trust me, the fence-sitting non-answer I received was not worth repeating. However what they did suggest was that I needed to tackle the lack of exercise.
At this point I faltered. You see, I know my body and what it tells me is how I judge what I can do and not do.
I’ve had ‘boom and bust’, payback and pain from doing too much exercise, feeling sick and ill, then there’s the chronic, wracking fatigue where sometimes even thinking about cooking a meal is all I can cope with in a day.
Exercise is both a good thing and a dirty word
Either way, the risk of developing Type 2 Diabetes was the writing on the wall. There was no way around it.
I had to start to do more exercise.
So I agreed to start Graded Exercise Therapy…
Before you all start posting comments under this blog about GET and the PACE trial, I know about it. Rather like CBT, it has a rocky history in the treatment of CFS and ME in the UK.
However I had to do something and this was the only thing on offer. For me trying GET was better than letting my body slide into a(nother) condition which is life changing and life long and for which I’d have to take medication forever.
Yes I’ve done GET. I’ll come out and say it. My name is Lindy and I’ve tried G.E.T.
My experience has been very hit and miss. In common with many people who have done GET, I’ve found that pushing through what my body tells me is the level of exercise it can do daily, has increased payback symptoms. No surprise there.
However I did push through because the goal was to address Pre-D.
I stopped GET when I injured myself
As I explained in this post I am having an MRI to look at problems that have happened with my leg since starting GET. As I did more exercise more regularly, the problem emerged.
Hardly surprising really!
I was a sedentary and mainly non-ambulant patient prior to starting to exercise again.
The CFS Clinic did no assessment of my level of functioning prior to starting on GET, took no history of any prior orthopedic or muscular issues and did not question me to monitor any symptoms whilst I was doing it.
When I talked about my payback symptoms their approach was to say:
“You must expect that you will have an increase of symptoms through doing GET. It’s a gradual process, nothing happens quickly with improving with CFS but it does work. Keep at it.”
Until I told them I’d injured myself.
The conversation that happened then made me angrier than any conversation with a healthcare professional about CFS ME since I’ve been ill and that’s saying something!
I’ve been quite open about the general lack in the NHS statutory health services of any specialist knowledge and the unsafe advice not based in good evidence-based research.
The comment that made me angrier than I’ve been made before was:
“Yes. We usually find that something like this happens at this stage of GET,” they said as if they’d swallowed a CBT manual and was using this opportunity to ‘challenge my thinking’ on a barrier to improvement.
They continued with this advice, “If you get to the gym or get on a bike….”
“I’ve got to stop you there,” I said, interrupting at that point and seething with anger,”I’m on crutches.”
“Why would that stop you getting on a bike?” was their response.
Yes folks. Someone actually said that and they are paid by the NHS and work in an NHS CFS clinic. Shocking, isn’t it!
Where the bike comes in
That was a while ago now. Yesterday I had a new fasting insulin test and a new HPA1C test to see how I’ve been doing.
MY HPA1c test came back normal but my fasting insulin test is going in the wrong direction. It’s getting worse, not better – the score was 7.4.
What can be done?
Again, the doctor said: “Can you do more exercise.”
Again, I said: “I have CFS ME.”
Again I waited for a joining-of-the-dots.
Again it didn’t happen.
So. Today my lovely father instead of arriving for our regular lunch date, arrived at my home with a present in the back of his car.
It’s a bike!
Now I love my Dad, obviously and this new bike is a fab present.
I have locked it up outside and I’ve made a decision. I’m going to start doing one small cycle ride per day. I’ll start using the basic principles of GET which is to work out a baseline and gradually increase once I can handle it.
I think that the conventional treatment for CFS ME in the UK is going to be hit and miss – we are all different people with different symptoms and different reasons for having CFS or ME but there are parts of the treatment that can be useful if you adapt them to suit where you are at.
I’ve been on a huge learning curve about CFS ME and also about Type 2 Diabetes. Both are part of my life to differing degrees. I don’t want to have Type 2 diabetes on top of a diagnosis of CFS or ME. It’s such a biggie that I want to battle it before I might admit defeat.
Yes, I will be cautious and careful. My bike will be part of my armour in the battle against Type 2 Diabetes.
Ha ha ha. Oh, I’ve just spotted: “Handle it” – see what I did there 😉
© Lindy 2015