Diabetes is tough

I was prepared for clinic yesterday. I knew what I wanted to say and how I wanted to say it. I had planned to have a serious talk about my diabetes control and management, an honest and open discussion that would provide insight into how I could work with my consultant to get to where I wanted, and needed, to be. I had rehearsed it over and over in my head the night before and in my head the outcomes had been good.

As I sat in the waiting room I flipped my phone over and over in my hands, looking at the new art work on the walls. For that brief moment I felt calm and composed, soaking up the vibrant colours as I felt my heart beat slow down. When I was called in by my DSN I realised I wouldn’t be seeing my consultant that day. No problem – My DSN was always kind, understanding and never judgemental. I was in good hands.

I started to talk. I admitted to letting things slip, pointed out my mistakes and gave my own suggestions for I could rectify them. I was asked how I knew things had slipped, and I realised I didn’t. We tried to get blood for a HbA1c – it didn’t happen. I sat sobbing, as always, whilst the nurse tried to reach a vein before it moved. I felt selfish as I walked back through the busy waiting room. Why should I be crying when every one of these patients is going through the same (if not more) as I am. Why should they see my tear stained face as they sit, probably feeling anxious themselves, waiting for their turn. How selfish of me.

The tears didn’t stop. “Is it the blood test or something else?” I was asked. Soon I was crying harder. I talked and talked, letting everything come out. What I wasn’t doing, what I was doing, why I was choosing to make those decisions, why I’m scared, what my future looked like, what’s stopping me from asking for help. I was asked what I wanted to do next. I didn’t want to do anything. I didn’t want to set any goals, plan for the future or create any expectations. I just wanted someone, somewhere, to be aware for when I am ready. I left my DSNs office and in the corridor were a group of consultants, amongst them was my consultant. I looked at him with my mascara stained eyes and then looked at the floor. One of the things I hate most about diabetes is that it makes me feel I’ve let him down. People will say this is a silly but it’s how I feel.

Later that night I had a text. “Everything ok? Clinic looked tough?”

Everything’s not ok but clinic isn’t tough. Clinic is a safe place, it does its job and more. It’s diabetes that’s tough. 

Ninjabetic x 

D-eye-abetes

A few months ago, at the end of a blog, I said that I had some good news. I was hoping to write about it (and celebrate it) much sooner but sadly almost 4 months passed before I had my news confirmed in writing.

In 2012 a consultant from my local eye department said these words to me; "You have stage four diabetic retinopathy. It's very likely that you'll lose your sight within the next 12 months."

I was beyond devastated. I was so scared that I couldn't reply or ask him any questions. I couldn't absorb the diagnosis I'd been given or make sense of it in my mind. The consultant didn't seem to understand the impact if his words, spoken in a small cubical with only a with a brightly coloured curtain separating us from other patients. He asked me to sign a consent form and then left me sitting alone to prepare for an hour long session of laser treatment on my eyes. That was the first time we met... I didn't even know his name.

In the months after this diagnosis I began to turn my diabetes around. Yes, this diagnosis was ultimately due to me neglecting my diabetes. I'd been warned of the complications that could occur if I didn't take care of myself, but I hadn't believed they would happen. I'd managed to slip through the NHS system roughly a year after my diagnosis and up until 2012 this had suited me just fine. I had no interest in attending diabetes appointments, they were incredibly generic and I felt that I was nothing more than a box that needed ticking twice a year.

But I was in trouble. Serious trouble that I couldn't turn around on my own. I refused to accept that I would lose my sight... I refused to accept that it was too late for me. The moment the consultant had spoken those words I truly began to appreciate what I had always taken for granted - my sight. I knew that I needed to fight incredibly hard to ensure I could beat this diagnosis, and that's what I did. My vision took a turn for the worst soon after the diagnosis, it was a period of time that took a lot of getting used to. I had to leave my job, temporarily, as I couldn't see my computer screen well enough. I couldn't drive, couldn't watch TV, and couldn’t leave the house without having someone with me. I lost a lot of my independence. 

It's true what they say... You don't know what you have until it's gone. The amount of treatment I'd been having for my eyes was certainly taking its toll on my vision but I knew that ultimately it was the best chance I had to stop them from deteriorating. Bright lights and dark rooms took a very long time for my eyes to adjust to, but after I'd had a lot of laser treatment, injections and operations, things started to turn around.

Over the past few years I've been having constant checks and tests to make sure I was on track and that my retinopathy wasn't progressing. I was aware that the stage I was at couldn't be reversed, but I could slow or stop it. I tried to form a link between my diabetes team and my eye team - I needed the communication between them to be strong but it didn't seem to form. This meant that I was passing on messages between the two which, at the time, caused unnecessary stress. Tightening up my blood glucose control had caused more problems with my eyes (something I hadn't been warned about by either team) but in the long run having better control was the best option, not only for my retinopathy but also to prevent any further diabetes related complications.

So the good news... In March this year the DVLA asked me to have an eye test to see if my retinopathy, or the treatment involved, had caused damage that would stop me from driving. Up until that point my consultant had said that he had no worries over me driving, and the DVLA had been informed of this, but it's always nerve-wracking having the fate of my driving licence in someone else's hands. Not being able to drive would cause me all sorts of problems and I expect it would cost me a lot of money to get around. Something that I can't afford at the moment. The DVLA took 4 months to send their answer (though they state on their website and forms that this process will only take 6 weeks!) and I finally found out this week that I've passed all their tests!! The field vision test that checks my peripheral vision was absolutely fine (laser treatment can cause this to deteriorate) and I can read a licence plate from the required distance :)

Finding out this good news after being told 2 years ago that it was likely I'd lose my sight has been wonderful! Although getting on track with my diabetes hasn't been easy it's definitely paid off. If I could pass on any kind of message from this journey it would be that I really wish I hadn't ever reached the stage where I was in absolute panic thinking that I would go blind... I wish I'd done something much sooner to prevent it from happening. If anyone else is going through a similar experience then I'd say hang in there, talk to your diabetes team and ask them to liaise with your eye team, research treatments and ask about what's available to you (Avastin was purchased by my hospital Trust but isn't used by all) and slowly tighten up your diabetes control... Quick changes can sometimes cause problems, so it's best to be slow but steady - that's why it's important for your diabetes team and eye team to talk to one another.

Ninjabetic x 

   

as I count my lucky scars...

A few months ago I was cleaning out my car (which meant I was ridding it of random test strips and scattered jelly babies that had melted onto the fluffy floor) and I came across my favourite Foo Fighters album ‘Echoes, Silence, Patience and Grace’. This album has been played on almost every car journey since my find with my favourite track ‘But Honestly’ on repeat.

“…And tonight I thank the stars, as I count my lucky scars, for everything you've given me…” 

I have lots of scars, some from silly accidents (mostly cooking related), but the majority of my scars are diabetes related. I don’t notice the scars on my arms any more, probably because I’m so used to them, but I don’t think they’ll ever fade completely. When I was going through my ‘I don’t need insulin’ phase, and had blood sugars higher than a giraffe on redbull, I used to have a horrible rash on my arms. For around 10 years people in the diabetes clinic looked at it, wrote a few notes and said a few words that meant absolutely nothing to me, but they didn't ever diagnose anything. As soon as I started getting my blood sugars under control the rash vanished, leaving behind some scars. Perhaps a good reminder for me not to go back to the dark side of diabetes.

Moving in a little, I have a lovely square shaped scar on my stomach that’s almost faded. This one’s from my 1^st CGM (continuous glucose monitor) which, when taking off the adhesive dressing that was holding it in place, took a chunk of skin with it. This really annoyed me at the time as I didn't want such blatant reminders of what diabetes leaves behind, but now it’s just another scar. Another story to tell. And then comes the insulin pump dot to dot game. Taking out my cannulas always leaves a little mark behind, and sometimes those marks don’t fade.

That brings me back to the lyrics above. I’ve never been someone who likes to look flawless, I’ve always been a tomboy – trying to be an action hero like Black Widow who can stand alongside the guys and give as good as she gets. In turn, having scars doesn’t bother me in the slightest, especially my diabetes scars. Each one tells a story, each one makes me a bigger person and I think each one makes me stronger. I think diabetes has definitely left its mark(s), and I glad it has.

Ninjabetic x  

Break free

I recently joined a diabetes forum and like most forums the people using it are looking for support and answers to their questions. I haven't been very active on the forum, but I've been watching as people from all over the world give different advice and opinions on diabetes subjects.

Today, whilst absentmindedly scrolling through posts to see if anything caught my eye, I read one from a lady who was desperately unhappy. She wrote about her partner who, rather than being supportive of her diabetes and the complications she is suffering from, has told her that she is a burden, that she has ground him down and that he can't offer her any more compassion. She wrote that he's always angry with her, that she feels scared and lonely and that she shouldn't be putting him through the stress of her illness. 

I felt terrible that she was going through such a difficult time on top of the pressures she already has, and tried my best to write some comforting words to her, to give her some reassurance and show some understanding. Soon after, more comments had appeared in reply to the post. Almost all of them said that they were in the same situation. They said that they hide their emotions and sometimes their diabetes for fear of upsetting others, fear of rejection or becoming a burden on their partners.

I felt so angry but also so saddened by this that I wanted to shout, to find each and every one of them and tell them that it isn't right. No one should ever make another person feel that way. I know, because I was once made to feel that way, and it was one of my biggest pitfalls.

Aged 17 (1 year after my diagnosis) I met someone. He was 26 and at the time was the best thing in my life. At first my diabetes wasn't an issue. He tried to understand it, but it was difficult for us both as I didn't understand it myself. 

Soon though the comments started...

"Do you have to inject in front of me? Can't you do it somewhere else?"

"I had to take more time off work to come and see you in hospital, it's making me look bad."

"You'll have to call an ambulance for yourself, I'm going to bed."

"You've put on weight, if you didn't have to inject then you wouldn't have to eat."

There were many more...

After a while some of the comments stopped because I had, by that time, stopped taking my insulin, stopped testing my blood sugars and stopped looking after myself. I remember the one and only time he came to a hospital appointment with me... I was with the diabetes nurse and she asked me to fill in the 'Problems and Associated Issues with Diabetes' questionnaire. One of the questions was about support and I could feel him watching me. I burst into tears and had to leave... He told me that it was a waste of time.

For almost 5 years this went on until one day I'd finally had enough. Breaking free was the best thing I ever did, it was a huge weight lifted, but by that time the damage had been done.

If I could have shown my 17 year old self the physical and emotional consequences of not taking care of myself, then I know that I would have never let it get that far. It took a while to come out of my shell, but now I'm confident and feisty and if anyone ever made me feel that way again it would be the last thing they did.

If there's anyone out there who feels that their diabetes makes them a burden or makes them feel that they aren't good enough, please think about how the future will look if you start to believe it.

Ninjabetic x