My next diabetes clinic appointment is next week. It’s been eight months since I was last there. I’m not sure how I feel about having such a long time between appointments but maybe that’s another post?
Diabetes, especially type 1 diabetes, is one of the few conditions where you actually have to prepare for your clinical review appointment. It’s how you will get the most out of your visit.
For a lot of years, I just showed up with my “diary” and walked out of there disappointed. If truth be told, I was very resentful that I had to be there and a little down in the dumps about the whole diabetes thing. During these years my primary goal was to get out of there as fast as possible and get on with my life.
I became more motivated at my diabetes clinic appointments when I was considering starting a family. And that motivation and effort has paid off.
I don’t dread my clinic appointment, like many do, because I feel this is my chance to get help if I need it, or to review where I need a little extra support from my team. But I do dread the getting ready for my appointment! It is a lot of work.
Everyone has a different way they prepare for their clinic appointment. Here’s how I prepare for it;
SAVING UP QUESTIONS TO ASK
In between appointments, if a, non-urgent, question pops into my head I try to write it down somewhere – preferably somewhere near my Long Term Illness book which I’m already in the habit of bringing with me. This coming visit I need to get an updated letter for travelling and I’ve already noted it.
About two/three weeks before my appointment, I have my blood drawn in my GP’s office to be sent to the lab. The results are usually sent to my clinic automatically but sometimes that hasn’t happened on time or at all, so before my appointment I collect a copy of my results and keep a copy for my own records.
BLOOD GLUCOSE RECORD
This first and last thing I do to get ready for this meeting is to upload all of my blood glucose meters (I use two) to the software programme I use for my insulin pump. I also upload all the information from my insulin pump.
LONG TERM ILLNESS BOOK
I bring my Long Term Illness book with my to my appointment so that I make sure it has been updated every six months. I also print out a list of all the “stuff” I use. My LTI book is 10 years old and there is a lot of stuff on it that I no longer use. This also saves a bit of time and scores me some brownie points with my endo. Always useful.
PRE-EMPT QUESTIONS I MIGHT BE ASKED
I try to preempt questions I might be asked about specific high or low blood glucose readings as best I can. I try to remember that the important readings are the ones that I can’t account for. Sometimes, I have to remind my healthcare professionals of that too.The highs and lows that are from the usual culprits are ones that I can address myself. Its those very rare highs and lows where I don’t know what the cause was that are a problem. If I don’t know what caused them then how can I prevent them from reoccurring.
So, am I ready for my diabetes clinic appointment? As ready as I’ll ever be! 😀
Here is another article I thought had some very useful tips on getting the most out of your diabetes appointment.
My diabetes clinic appointment is coming up next month and I scheduled my blood draw for my labs with my GP’s surgery. I usually get them done about 2-3 weeks before my appointment so that I have enough time to collect and copy them for my own records.
The regular blood draw for labs is one of the “joys” of having type 1 diabetes. And for this one, I scheduled a fasting blood sample because my cholesterol was due to be checked. However, I have read that being fasting for this test doesn’t actually affect the accuracy of the result. But do I want to have that “discussion” with my nurse practitioner or not yet?!?
The morning came and I had written a note for myself to remind me not to have breakfast. Sometimes, I wonder “What I’m like?”
Low (pun) and behold my CGM started to alert me to the fact that my blood sugars were below 4.1 mmol/l (74 mg/dl) with a ⬊. I did a check on my meter just to be sure. And YEP!
So what to do? I decided to still forego brekkie and top up with 2 glucose tablets, which is usually enough to bring me back into the 5’s. The important thing for me to remember was that I was driving – it was only a short drive but none the less driving. Don’t drive under 5 mmol/l (90 mg/dl).
By the time we left the house for the school drop off I was at 5 mmol/l. After I dropped the kids off at school, I went home and literally didn’t breathe so that my blood glucose wouldn’t drop any further. I only had to hold out til 9.50am.
I made it! I told my nurse what I used to bring my sugars up to make it safe to drive and she didn’t even bat an eyelid. So that was great!
However, there’s another disadvantage to trying to do fasting blood tests when you have type 1 diabetes and that’s when your done with your appointment.
I was starving, famished, could have eaten a horse. I ended up at the closest cafe and ordered the lesser of all the evils … or so I thought; a plain cheese and ham croissant. Definitely not a great option, unhealthy and boy did it send my blood sugars into the clouds.
I feel like I should’ve gone all out and had the muffin. But at least this job is done for another year.
Last week this happened but I was only just getting back into the swing of things and so only writing about this week.
Jetlag day 4 and feeling like a functioning human being again. I must have slept really well because all my aches and pains subsided. See last week’s depressing post.
It’s also Day 2 of the kids being back to school and day 2 of me getting back into my walking regime. I was feeling so good and my ankle was feeling so good that I decided to try that hill. The one that I haven’t tried in about 3 months due to injured accilles tendon. And go that bit further.
When I reached the top I felt like Rocky!!! I almost did an air fist pump but that would have looked sad – it’s not a very big hill :-S
Anyway, I was well on my way home when I felt my insulin pump on my hip start to buzz to alert me to the fact that my blood sugar was 4.1 mmol with a ↓ Then I remembered that I really should have factored in how much insulin I took for breakfast the previous hour and how I didn’t know then that I was going to go that bit further. Oops!
Luckily, I always carry glucose in my meter case. And I always shove my meter case in my coat pocket. I grabbed a couple of the glucose tabs but I could already feel the river of sweat streaming down my forehead, down my back and down my front. And I knew it wasn’t the moderate workout I I had hoped for. My arms and legs felt like they belonged to Raggedy Ann or Andy. A little further on I took another couple of glucose tabs because I knew this was a serious hypo.
I was still thinking clearly, surprisingly, because I felt that I wasn’t at the point where I needed to call for backup. I felt I could still make it home, shakingly, and flopsy-mopsy style(cos that’s what it felt like) but I could make it.
And I did! I got inside my front door and sat on the stairs, laid back and just wait for the intense heat steaming from my body to stop.
The lesson I hope I have learned from this experience is that I need to factor in previous insulin dose into spontaneity.
However, the likelihood of that lesson sinking in and popping out immediately when needed is doubtful. One can only hope!
It was my birthday last month! Sarcastic yah! I turned 44. I know that anyone older than 35 thinks that 44 is young but I am not happy at all about being in my forties, especially because the aches in my joints make me feel older that I am. And because of that achy hip and torn achilles tendon that just won’t heal, I feel that my best, physical, years are behind me. So my birthday is a bitter sweet mix of “hurray, it’s a day all about ME” to “Boo, another year older”.
But, I suppose, there are worse things in life. And there are some amazing things going on in my life, including but not restricted to, watching my children grow and mature and become amazing young people. I’m so proud of them. I have a lot to be happy about right now. All of this doesn’t stop me worrying about the future, about worrying about growing old with type 1 diabetes.
Every year, my birthday reminds me that one day I will wake up and actually be old! Old with type 1 diabetes. I will be old and maybe my brain won’t be as sharp as it once was. How will I work out insulin doses safely? When will my old age start?
I have been taking care of my own diabetes ever since I was diagnosed but what happens if old age prevents me from doing that? What will that mean for my husband, my daughter and my son? I don’t want them to carry this burden.
Will I end up in a nursing home hoping with staff taking care of me who don’t know very much about type 1 diabetes? Should I make a plan to make sure no one has to take on this responsibility?
This is my biggest fear! Getting old and still having type 1 diabetes and the fear that I will not be able to take care of myself any longer.
I do not want to be elderly with diabetes. Full stop. I want a cure before I’m old.
This is a worry I have that is persistently at the back of my mind. I don’t allow it to take up much space in my head because it has the potential to drown me. So, just for today I’m letting it out to lessen its influence it has on my outlook on life. Tomorrow I will put it back in and focus on what is good about today.
It’s difficult to believe all the goods things that have happened to me through Blood Sugar Trampoline this year, and with all the other diabetes related stuff that I do. Sometimes I have to pinch myself.
Every year, when I write my Christmas cards, I include a letter with a bit of a summary of what our family has been up to for the year. When your family lives on two continents it’s important to keep the connection in this way.
It was while I was writing this letter that I realise just how much has happened to me this year because of blogging and volunteering. Here is some of my favourite highlights from 2016;
I was invited to be part of the Diabetes Ireland and Diabetes T One Delegation to the Dail. This was a huge honour for me. And the moment where I truly felt that we, in Ireland, have a hell of a diabetes online community.
At the briefing, we asked the 42 public representatives who attended to commit to developing a multi-year financial plan to implement the services required for all people with diabetes in Ireland. Starting with approving a request for an additional €5 million per year to implement all the recommendations on the Paediatric Diabetes Model of Care, improving not only the quality of life for all children and teenagers with diabetes but for their families also.
Maybe this would be a good time to give our TD’s and Senators a little reminder of this?
September – I won the Littlewoods Ireland Blog Awards Bronze Award for Best Blog Post. This Cinderella didn’t go to this ball though. In fact, she didn’t even write the award winning post :-O hubby did and that makes it all the more special. Plus, he said some really nice things about me, excuse me a minute while I give that post a quick read again;-)
October – The second Thriveabetes took place bring the online community offline for one day and It. Was. AMAZING!
NOT TO FORGET the random and wonderful meetings with members of the Global DOC Anna Norton, Gina Gaudefroy and being part of the Type 1 Adult Diabetes meetup in April!!!! (PS hubby says when someone from the DOC says they’d like to meet up I should drop everything and go. Not sure he realises what that means for him:-O )
How is it possible that something as frustrating and mind consuming as diabetes can bring all of this adventure and support.
Thank you, all of you, for your support, motivation, comfort and joy.
I have lived with Type 1 Diabetes for 23 years. I know how lucky I am to not have any diabetes complications…. so far. And yes, a decent HbA1c does play a role in that, but more than we want to think about it, some of it is down to luck.
However, it is a lot of hard work to pull off a decent HbA1c and people are very often surprised when I tell them all the things I do to try to achieve that. Maybe I make it look easy? Or maybe they’re wishing for something easy, but the easy life died along with our pancrea.
So, how do I manage my diabetes?
Managing diabetes is not as simple as taking my insulin and forgetting about it. I don’t just think about my type 1 diabetes at mealtimes – I can’t afford to, so much can happen in between meals.
In my opinion, managing diabetes is about balancing medication and physical activity with carbohydrate intake and stress levels. Even if I lived every single day the same this would be difficult because of the variables like stress, illness hormones, climate changes, etc.
Here is the “Magic” list of things I do to “manage” my diabetes.
Blood Glucose monitoring:
at least 7 times a day. Before I take insulin which would be every time I eat. And I check about 2 hours after to be reassured that I didn’t take too much or too little insulin.
I take at least 3 bolus infusions daily through my insulin pump. I may do an extra fraction of a unit in between those times if needed. My basal/background insulin is delivered continuously through my insulin pump.
I’m hopeless at eyeballing the amount of carbohydrate on my plate so I weigh it. I find that my measuring the amount of carbohydrate, my insulin to carb ratio is more accurate.
there’s a lot to keep record of. I’m a recent convert to a smartphone so I haven’t completely let go of pen and paper to keep track of everything, but I do use an app that makes me feel good about logging information and sends me a weekly email with how I’m doing.
I held off on exercising until I got my insulin pump and my children starting school made this easier too. My resistance was due to fear or unwillingness to deal with the initial hypos while on multiple daily injections (MDI). However, the more I read about the longest living people with type 1 diabetes, the more I realised that exercise seemed to be one of their key elements to good control. Plus, when my joints started to get achy that was an added incentive.
Attend multiple medical appointments:
I used to see my endocrinologist 3 times a year, but this seems to be reduced to oncer every 8 months. I’m not sure how I feel about this. I also visit a podiatrist & optician annually through the National Diabetic Retina screen programme and the community podiatry service.
Upload my insulin pump and CGM data to a computer programme:
I do this at least once every three months and definitely before a clinic visit.
Prepare thoroughly for my clinic visit:
by having my blood work done well in advance, I collect the lab report from my GP and keep a copy for my own records. I make a note of any questions I want to ask and make sure that I have time to ask it.
A good support system is important to me.
My husband is crucial in this; he needs to understand diabetes as much as I do. I’m also a member of a Type 1 Support group and I draw comfort from meeting others just like me who speak my language. I also participate in many diabetes online groups.
Making sure I know as much as I possibly can about my diabetes;
I draw motivation from reputable diabetes websites that I can relate to and by reading stories like that of Bob Krause who lived in San Diego and at the age of 90 has lived with Type 1 diabetes for 85 years and is still hale and hearty. I read about Nat Strand who won The Amazing Race, Charlie Kimble race car driver.
Making time for all things diabetes related while not letting it take over my life.
Diabetes is frustrating at times but I’m not about to give up. I’ll give it my very best because I have soo much to live for. All of this may sound like it consumes a huge amount of my time but the more you do it the less time it takes.
A couple of weeks ago I wrote about attending Diabetes Ireland’s Health Awareness Exhibition in Dublin and that I was most looking forward to attending the medal ceremony to people who have lived with diabetes for 50 years. Read more about the other happenings on the day here.
It was SO worth the 3 hour drive with kids in tow. There were 16 of these soldiers receiving medals. Each one was called up to receive their medal and Kieran O’Leary, Diabetes Ireland CEO, gave a brief biography of them.
As I watched each of them receive their medal I was struck by the fact that by the time I receive mine, living 50 years with diabetes won’t be such a big deal, such a monumental achievement. It will be the norm.
What all of these guys went through from boiling glass syringes, from the embarrassment of testing their urine for glucose to the restrictive dietary regimen. Remember, when these guys were diagnosed they were told that they would never eat sweets again and that they could eat diabetic chocolate.
Out of the 16 medalists, only 3 (well technically 4, cos two women were sisters;-) have a family member with diabetes, either before or after.
Speaking to Kieran O’Leary afterwards, he told me that Diabetes Ireland would like to make this an annual event. They realised that this year only three endocrinologists put forward nominees for medals and that there are many more people who have lived for 50 years with diabetes and more out there.
I would also like to see a 60 year medal as my friend Stan, from Clare is already at that mark and my friend Pauline is nearly there.
Thomas remembers boiling his syringes and using the urine test strips for 30 years. Always played sport.
Noel diagnosed at age 12 at Christmas. Always played sport
Trevor, diagnosed at 16. Trevor has 5 daughters (Go Trevor) and none of this children or grandchildren have diabetes.
Catherine diagnosed at age 4. By age 6 started injecting herself.. Remembers the embarrassment of having to test her urine for glucose. The arrival of blood glucose meters removed the embarrassment.
Sisters Marie and Margaret, diagnosed in 1966 and 1964 respectively. Margaret remembers her mother telling her not to tell people about her diabetes and was segregated at meal times in school. Marie remembers two occasions when she passed out on the street from hypos and maintains it taught her to always be food prepared.
William is the only person with type 2 diabetes in the bunch. He was diagnosed in his 30’s and managed it with diet for 4 years. He only went on insulin last year. William Rocks!!!
John was diagnosed at age 8 and hated being different. The best diabetes invention was the blood glucose meter.
Mary has lived with diabetes for 57 years. Her grandson was diagnosed in the last couple of years but her own children don’t have diabetes.
Kevin was diagnosed at age 12, has always been a keen sportsman and credits that to his good health.
Marion was misdiagnosed as a child with kidney infections but eventually the doctors realised it was type 1 diabetes.
Frederick was diagnosed at age 12 and his mum had type 1 diabetes. He found working on building sites were a huge challenge because it was so difficult to keep his glass syringes sterile. Frederick was diagnosed with MODY last year and doesn’t require insulin anymore. All of his children have been tested for MODY and have been found to have the gene mutation.
Maturity Onset Diabetes of the Young. MODY happens when there is a mutation of a gene and is most often hereditary. It very often is confused as type 2 diabetes in a young person.
Marion was diagnosed at age 11. She found the best innovation in diabetes management was structured education.
Jane Fidelma was diagnosed at age 23 and maintains that her positive attitude is responsible for living 50 years with diabetes.
Sheila was diagnosed at age 10 and has lived 56 years with diabetes.
Olivia - please forgive me Olivia as I did not catch any details.
Liam was diagnosed at age 10 and has lived with type 1 diabetes for 62 years and can be found in any park going for a run.
I’m not American. Nor do I live there. But, I am surrounded by them; married to one and both of my children are US citizens. And so Thanksgiving features strongly in our household.
This year, we had an Expat Thanksgiving and celebrated it on the Sunday after the actual day so that none of us were working. It was lovely and it was lovely to be with our american friends living in Ireland.
However, as a person with type 1 diabetes, dealing with celebration feasts are a huge challenge. This one turned into a 24 hour challenge in that the high blood glucose levels wiped me out the next day. Maybe, this is why the Americans make thanksgiving a four-day weekend?
My approach to big meals, like this one, are to have a little of what I love, a very small amount of what I don’t consider worth the insulin, just to be polite, and maybe even skip the potato, because, well, I’m Irish and we had them Every, Single, Day growing up.
My blood sugars did reasonably well, considering. But this year, about four hours after pie, when I thought I was a little in the clear, they started to climb and climb and then hover. It was 2am when my CGM alarmed for the last time and I could get to sleep. I woke the next morning as if I had been out all night.
Monday morning, I had planned to treat myself to a morning of retail therapy in the city and to finish off the last of my christmas shopping. I thought about not going because I was too tired. Then, made myself go because it would do me good and maybe I’d feel better for it.
It did not work! I persevered because I had driven all the way there but when the toy shop told me, after waiting in line for about 8 minutes, that their computers were down and could not issue a gift card, I decided that I had made a serious effort. It was time to go home.
Had this been any other day. Had I not been battling blood glucose numbers the night before, I would have been productive on a superhuman level. My daughter finished early from school and so I only had one school pick up in the afternoon. I thought to myself “Great! I’ll have at least an hour or more to do some writing this afternoon”. That didn’t work either. I could even concentrate on scrolling through my facebook feed. And that doesn’t require any concentration but I still couldn’t do it.
I gave up! I put the iPad down, the phone down and put my head down on the couch with lots of blankets and took a nap! And actually, in between the “Mom, where is the….” and the “Mom, can I….” I did actually nap.
Sometimes, you have to give diabetes a win so that you can prepare yourself to fight the battle again another day.
I was 20 years living with type 1 diabetes before I hit THE wall. The wall where I was done with it! Every blood glucose test was a nightmare, and no amount of insulin brought my blood glucose levels down to a respectable number. I’d had enough of diabetes and it needed to go away RIGHT NOW!
You may not know what I’m talking about, if you are one of those people who just gets on with diabetes management, without feeling an overwhelming mental burden, you are lucky. But I’m asking you to continue reading, just in case you ever do hit a wall such as this. Maybe not a big or hard wall. It could actually be more of a “I just don’t feel like getting out of bed today but I have to, so I will” wall. But if that day turns into a week and then maybe a month. It may affect your diabetes, even if it’s not related to your diabetes.
If this happens to you, you have to figure out a way to get around it, over it or through it and that needing help is not a failure in your capacity to manage your diabetes.
Four years ago, the only thing that kept me holding on and got me out of bed each morning were my children, my amazing husband and being an active member of the Irish Diabetes online community.
They didn’t even know that they were holding onto my hand so tightly so that I didn’t fall off the cliff and plummet to my death. But they were! Well maybe my husband did but no one else knew.
My story is long and I’ve written it countless times before but now seems like the right time to publish.
Four years ago, at 19 weeks pregnant with our much longed for third baby, I was told, very compassionately, by the doctor, who performed a foetal anomaly scan, that my baby’s brain had not fully formed and that the condition was “not compatible with life” and that my baby’s heart was not beating any more, and it broke me. I didn’t know it then, but it was going to be a long time before I would be fixed again.
I could give you all a day by day account of what happened between that day, the 19th May and the early morning hours of the 25th May when our baby boy came into to world sleeping. But I won’t. I will just tell you about the nurses who took care of me, who cried with me and helped me get through those first few days. My husband who held my hand and helped me breath through the labour pains. And my endocrinologist who told me that under no circumstances was I to blame myself or my diabetes, that I was to forget about my diabetes for three months and then she would help me get back from where I was lost.
My Wall was grief. I made it through the physical healing stage, where simple, everyday tasks, such as driving the children to school or just being alive and breathing, were extremely difficult to accomplish. I don’t know how many times I nearly drove into the car in front of me. This lasted about two months, then functioning became easier but a fog of sadness descended and it would not lift.
Not only was I struggling with my grief but I was struggling with losing the dream of adding to our family. I was now 40, pregnancy was not going to be easier, I was older, with type 1 diabetes. How high risk was too high of a risk? This was the first time ever that diabetes was influencing my decisions. My brain was a spaghetti junction of thoughts going backwards and forwards of “to hell with it” and “no, it not worth the risk”.
In the following months, it became easy to smile on the outside but inside my heart was broken and I was just sad. Extremely sad. All of the time. I had panic attacks, but I didn’t know what they were at the time. I couldn’t sleep. However, I did all of the things that were habit in looking after my diabetes – I never once stopped taking care of it. But my diabetes was not behaving and was having a full blown tantrum, like it was the child I lost. In hindsight, I feel that it was telling me that it wouldn’t behave until I took care of what needed to be taken care of; my head and my heart.
I knew that I needed to talk to a professional. I knew that my diabetes was very much out of control and that I couldn’t risk allowing it to continue that way. But it was 16 months after we lost MJ, that I found someone to call, recommended by a very good friend.
I remember calling her and making the appointment vividly. Because she said that I had overcome the biggest challenge; making the call. That the next steps wouldn’t be so difficult. She was right. I felt that I had taken my first step back to finding my “happy” again. I felt like a little patch of fog had cleared to let one ray of light in. And, I kid you not, after months and months of crazy blood glucose bouncing around, they fell into a decent pattern again from that day.
Living with type 1 diabetes requires a lot of mental energy and if your brain is dealing with a trauma, stress, anxiety, grief and sadness, doesn’t it stand to reason that you’ve got nothing left for diabetes? And…your diabetes doesn’t like to feel neglected and ignored.
If your head in not in a good place, you may not be able to put your diabetes in a good place. Diabetes is challenging enough at the best of times. Your mental health matters! And it matters to your diabetes!
So, there may be a day, a week, a month and maybe more where you may feel this. And these are the things it might help to know;
Mental health isn’t always about being diagnosed with a condition, disorder or illness. It is about your emotional well being. Every single one of us will experience tough times in our lives and sometimes we will not know how to make it through those tough times.
If the feelings of “the blues” continue for weeks then it’s a thing that must be dealt with.
Taking care of your diabetes is about taking care of your mind and well as your blood sugars.
Know that talking to someone will help. “A problem shared is a problem halved”
Know that, sometimes, your nearest and dearest; your parents, your family, your friends, even your husband may not be the best people to talk to. You won’t be completely honest with them about how you’re feeling because you don’t want them to worry about you more than they already are. They want to protect you and you want to protect them.
You may have to pay someone to listen to you. But guess what? They don’t judge! They don’t say “snap out of it” or ask “how can I help” when you don’t know the answer. They actually have a degree of some sort in how to get you to figure out how to help yourself!!! Yeah!
That the stigma attached to seeing a mental health professional is nothing compare to the hopelessness, the exhaustion of diabetes, the depths of despair or sadness that you feel now.
At the end of November, I will have been wearing my Continuous Glucose Monitoring System (CGM) for one year. And I really don’t know how I lived with type 1 diabetes without it?
I know that I am unusual in that I get 21 to 30 days out of each sensor I wear. Or maybe my immune system is just completely useless altogether? So, I thought I would take a photo diary of the life of one of my CGM sensors and take you through what it looks like.
CGM sensor - Day 1
Freshly applied. All clean and smooth and new.
CGM sensor - Day 11
The adhesive is getting a little bit loose around the edges. So I used some tape to secure it in place.
CGM sensor - Day 16
The tape is starting coming off. So I need a even more extra sticky help. Sometimes I just remove the tape and put some fresh tape on but on this occasion I went for something different. See next slide.
CGM sensor - Day 16
The extra sticky help came in the form of RockaDex patches which I got from Australia but they have since set up a UK distributor.
CGM sensor - Day 25
My Rockadex patch starts to loosen around the edges. On this occasion my sensor has stopped transmitting and so, this was the end for this guy. But if it was to continue I trimmed off the edges.
CGM sensor - Day 25
My sensor stopped transmitting and so that was the end of it. Time to start a new one. This is what my arm looks like after 25 days of wear.
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