Wednesday, 23 June 2010

Sometimes you just feel tired…

Diabetes is a peculiar disease sometimes, in that, when everything is going well with your blood sugars you actually feel GREAT! You might actually stop and wonder how you could have a disease when you feel so healthy!

However, when the old blood sugars are not doing what they are supposed to and that sluggish tired feeling creeps in, it can be hard to get back on track. And it’s such a vicious cycle; you need some cheering up when the numbers let you down so you indulge in some comfort food, which exacerbates the problem. Then, you feel guilty for having the chocolate (or whatever the poison might be) and get even more down. At this point, it’s harder to feel good. Depression can sneak in and it takes quite a while to get back on the tracks again.
Every day that I feel like I could take on Mount Clean-the-Windows I have a little celebration and tell myself “well done” and “see, you can do this”. And I tell myself that all the carb counting, the sums in figuring out how much insulin to take for this meal and the watching every single bite that I put into my mouth is worth it. It’s encouragement to keep it up.
But then, there are days when you have that sluggish-tired feeling and you try to determine what your body is telling you. You feel like sitting in front of the telly and watching hours of Nickjr or Playhouse Disney with the kids instead of testing your blood sugars.
It pays off though when you do make the effort and test because when you get a good number you realise that it’s the fact that your body is just plain old TIRED and it’s nothing that a good night’s sleep will cure…. Sometimes, getting a good eight hours of sleep is more difficult than diabetes:-)

Thursday, 17 June 2010

Getting the New Technology & Treatments for Diabetes.

So you’ve heard about the benefits of the insulin pump and continuous glucose monitors and sensors. And you’re thinking “I might just get my diabetes under control if I have one of those”

How do you get one? Well the answer is that it’s not as easy as just deciding to get one.

In Ireland, people with diabetes get all of their medicines and medical supplies, relating to diabetes for free on the Long Term Illness Scheme, which is fantastic! However, when a new treatment comes on the market such as the insulin pump which costs €5,000 and then about €100 plus per month for the supplies, not to mention what it costs to have specially trained medical staff on call 24/7 to support the pump user, the people who foot the bill start to ask questions. Understandable!

So, the most common replies to questions about the pump are that there are problems with funding the staff needed to provide pump support. (I might add here that the suppliers of the pump actually provide the patient training.) Then, you will be told that the HSE won’t approve the funding for the pump.

It is a very savvy customer/patient who will pursue this quest after that.

So what happens if you want something like a glucose sensor? And your medical team just won’t discuss it with you. The supplier, obviously, wants to give it to you; you’ve done your research and decided that you want it. Surely, there is a way that you can overcome these problems.

Maybe it’s time for the Health Insurance companies to join this debate. Maybe in order for them to prevent us from claiming huge medical bills for kidney disease, limb amputation, hearts bypass surgeries, etc., they should be working with Roche, Abbott, Animas, Medtronic, etc. and helping people with diabetes manage our disease better?

Wednesday, 9 June 2010

How do you feel about Diabetes?

I know I have a positive attitude when it comes to my diabetes. But, just for a moment, I’m going to explore the negative feelings that might surround it. Why am I putting myself through this? Well, I met with my friends with diabetes recently, and we talked about all of this stuff – you know “feelings”. So I am actually dwelling on it a little and feel that in order to expel it I have to write it.

The first negative thought in my diabetes journey was just after diagnoses. I wondered if I had given myself diabetes, did I do something that brought it on or was it karma for something horrible I did in my past life that I didn’t know about yet?
Other feelings that creep in are;
The Burden. Ultimately, this disease is about “self-care”, which means the responsibility of keeping well & healthy is my burden. Yeah, I could share it with the people who are most important to me but why would I burden them? I feel I should be able to carry it all by myself.
The Guilt. Deciding to have children and what if they have diabetes too. I would blame myself and find it difficult to live with.
The Doldrums. The feeling I have when, no matter what I try, the blood glucose numbers are too high and I can’t get them down. I start to feel awful, physically, and then, start to feel awful emotionally, and the will to keep trying disappears, making it harder to break the cycle.
The Fear of the future. This one was a surprise to me because I think that when it does surface I quickly push it back. This feeling is all about what I have to look forward to; a life without sight or without limbs? What will happen to me when I get old and can’t take care of myself and have to depend on others? Do I put myself in a nursing home where the staff is not properly trained in diabetes care, or do I ask one of my children to become my full time carer?
So now it’s out there and I’m going to shake it off. I’m going to focus on taking it one day at a time; one blood glucose reading at a time. I’m going to find the stories of inspiration like that of Gladys Lester Dull aged 90 years and living with Type 1 diabetes for 83 years (from 50 Secrets of the Longest Living People with Diabetes by Sheri Colberg & Steven Edelman). I’m going to focus on the fact that there is always more to learn about diabetes, new medical advances every year to bring me closer to a cure and most of all, there are more people to meet with diabetes that radiate positivity.
It can be done!

Thursday, 3 June 2010

I get so mad at my Doctor....

I recently had a conversation with my consultant's secretary that left me so annoyed, I had to wait until I calmed down to write about it. I'm sharing this experience because the medical professionals can very often have a negative impact on a person with diabetes and we need to rise above this temptation to "lash out" at them by hurting ourselves.

So on Thursday, 27 May 2010, I received a phone call from the secretary at my endocrinologist’s office. And it went something very close to this;

Secretary; “Grainne, I’m calling with your fasting bloods results.”
Me: “my what? The bloods weren’t fasting- do you mean my HbA1c?”
Secretary: Your Hb mm… yes. The result is 7.0 and the Dr. says you have to do better.
Me: What!

The conversation continued for a couple more minutes and I was polite and civil because I knew the secretary was just doing what she was asked to do - blindly.
Firstly, how do you react to being told that “you have to do better”, when you think you’re doing everything you possibly can to begin with. Being told this makes me feel like having diabetes is all my fault, and that I’m clearly not managing it very well so again that must be all my fault too. It also made me want to head straight for that chocolate tin or the pint of ice cream.

Secondly, why I ask the secretary how I should do better, what do you think her reply will be. Yes, instructions about my diabetes management should come directly from my endocrinologist and not from someone who isn't qualified to answer follow up questions. Afterall, that's what I'm paying for (yes this is the private health system I'm talking about).

And thirdly, how am I supposed to do better with a one sentence instruction? This doctor gives no specific instruction other than to have lots of bananas. Dr. X doesn’t talk about carb counting, sliding scales, insulin to carb ratios, testing or anything useful. I need a conversation on how I can do better that offers me options and realistic goals.
I think it’s time that I said to my endocrinologist that she should do better – I am paying her €100 per visit and maybe it’s time she earned it. Maybe, it’s time that she trained her staff appropriately too. And while I’m at it, maybe it’s time she acquired some better time management skills instead of taking patient phone calls during consultations.
I should give my hubby a break and direct my rantings and ravings at the person responsible for them.