Fear

 The difficulties of T1D have been chewed over and over for years. New difficulties appear, from time to time, as people become comfortable or brave enough to start talking about them openly. I think we've seen that, recently with eating disorders and the mental health impacts on individuals living with Type 1 Diabetes. 

That's good, right? If we talk and share experiences then others don't feel alone, HCPs take notice, treatments and referrals can happen, we can get better or maintain health. I've always been a sharer in regards to my diabetes and, if you know me well enough you know that I encourage others to talk as openly as they care to.

It's not easy to share. At some point you'll probably be on the receiving end of negativity. Eventually, somebody will likely tell you that you are "attention seeking" or "showing off". That may be true. Social media is a place for seeking attention for engagement and I'm certainly guilty of showing off... I'm a sharer, remember? but for the right reasons. You may also be on the receiving end of self doubt. Did you share too much? Eek! Perhaps it's time for a social media break or to even abandon your accounts entirely and become a lurker, a reader, no longer sharing because it's safer that way. That happens. It's a shame when it does but it's also understandable. The Internet can be a vicious place, a scary place. #DOC is not an exception.

Social media fear is certainly a thing. I know I've written many tweets and decided against sending them. Sometimes I light fires on Twitter but I really do prefer the peace. Honestly, I do!

Fear plays a huge role in living with diabetes. I've read countless tweets from people who are frightened of what's happening to them and what might happen to them. The eye clinic, the lasers, the blood tests, are my kidneys okay? why have I got pins and needles in my foot? That chest pain.... Perhaps some of those are familiar to you. And your reaction? Fear.

Fear of complications and fear of dying seems natural. After 36 years T1D and a good taste of eye complications, I still "feel the fear". I don't think about things each day but, from time to time I get that moment where everything stops and my brain is entirely focused on what I have. Then it's gone. That briefest moment containing all the fear, all the self pity, all the anger and sadness. It might only be a split second! It feels like I've swallowed an anvil. Then it's gone.

What's the solution? 

I suspect the answer is in acceptance and to expedite acceptance probably means therapy, if not for all then for many. 

Right now, I don't think therapy would serve much purpose for me. I do, however think the newly diagnosed should be seeing a therapist as routinely as a dietician, perhaps even more frequently. And for as long as it takes. 

I reached the stage of acceptance a long time ago. Fear still crippled me when eye complications appeared on the horizon. My head went into the sand and instead of facing up to some uncomfortable weeks and months and coming out relatively unscathed, I hid away and my reward was a lifetime of visual impairment after two years of surgeries and pain. 

Would the news of eye complications and an offer of therapy have helped me? Possibly. I may have faced the fear of lasers and injections instead of pretending it wasn't happening. 

Could it help others? Possibly.

Is it time for newly diagnosed diabetics and people diagnosed with complications from diabetes to be offered immediate, on site, therapy as a matter of urgency and total normality?

You tell me! The comments box is below.  

Shares in Diabetes

Diabetes is certainly a long term investment. Selling out would be great, wouldn't it?

Sadly, this particular deal is locked in for life. Unless, of course, there is a cure in around... oh, shall we say 5 years?

I can already imagine that you're reading this and demanding to know what this blog is about. Shares? in Diabetes?

Like the FTSE Check 100? 

Or the Low Jones!

Maybe it's going to be something related to Pharma and their Banting Juice businesses.

No. What I'm going to write about today is the sharing of information in regards to your diabetes. The passing of tips, the screenshots from heaven (or hell), the freely offered resources you have stored in your brain from your diabetes experiences. Perhaps your HbA1c! Eeek!

I think it's all marvellous. I think it's really useful to hear about the experiences of others but not to compare myself or make myself feel like a failure because somebody had a better day than me. It's great to read about the successes and the tone of excitement in a tweet when the sender feels good about how they're managing their condition. I love that! and I take huge encouragement from A1cs which are lower than mine, TIRs that are higher than mine and people living great, long lives with Type 1 Diabetes.

I know sharing isn't for everybody. I know some take things very personally. I can't offer much advice if that relates to you, only that Diabetes is an endless supply of good and not-so-good times. Everybody has had an awful day but not everybody will tweet about it. 

I TRY to offer both sides of my Diabetes "coin". I tweet about the good days, the awful days and everything in between. I tweet about the things that I shouldn't do, such as reuse my needles and lancets, much to the eye-rolling of the DSNs. 

I won't apologise for that and I won't change. I do actually change my needles now, I mean I won't change what I choose to shares. I do my best to be a real diabetic. I do my best to give my honest views about diabetes. I... just do my best, as I'm sure many of you do. There is no such person as the perfect diabetic.

So, take on board as much shared information as you can. Don't try to emulate anything without proper medical advice. Don't be afraid to offer your views or your experience. You'll be surprised at just how many people you're helping.

Talking of sharing experiences! How do you fancy earning an extra £80 for a quick telephone call? I'll let Anne from QualWorld explain:

We are conducting a market research study among young people (16-20) and carers of children with T1D that would like to share their experiences of living with T1D. We would like to hear from carers of babies, toddlers and children up to the age of 13. Teens between 13 and 15 have the opportunity to participate together with their carer or under the supervision of their carer and express their own opinion, but carers can opt to speak on behalf of their 13 to 15 year olds if they wish to do so.
Participants will receive £80 GBP for a 60 min telephone interview.

To take part just visit: http://tiny.cc/r5b8tz

For information email: anne.verbeke@qual-world.com

Shoulders

Brrrrrrr!

You read the blog title and you thought 'He's going to waste my time, talking about frozen shoulders'

You're not wrong! 

But I'll talk about shoulders in a different way, too. 

Let's start with the frozen thing because the cold REALLY bothers me anyway. I heard some friends talking about "Frozen shoulder" a couple of years ago. I didn't really give it a great deal of attention, assuming it may just be a coincidence that they have Type 1 Diabetes and Frozen Shoulder. I also remember seeing it mentioned infrequently on Twitter but didn't think much of it. I didn't have any issues in the shoulders and, after over 3 decades in the T1D club, thought it might be a rare complication that won't "get me".

Yeah. So, I probably have a frozen shoulder. I say "probably" because nobody seems sure and with everything being very virusy right now nobody is really keen to investigate in detail or send me for a scan.

It all started back in August/September 2020. I woke up, feeling very stiff (giggity). The kind of feeling you get if you've slept in an unusual position. The stiffness wore off as the morning progressed but then I noticed sharp "electric shock" pains in my shoulder if I raised my arm or stretched. The feeling continued for a few weeks until I called for medical advice. Physio began, as did Naproxen for the pain - later replaced with Cocodamol.

4 to 5 months later, things have improved but it's "still there". It doesn't often affect me during the day but I do have trouble getting comfortable in bed. It seems to be slowly getting better. I have no advice on how to avoid this happening to you. With other complications, we know to go for screening, get our feet checked and hand a tube of urine to a nurse - those checks are supposed to stop things becoming too bad for various complications. With shoulders? Nope. If you get it then your options appear to be physio or steroid injections. They may or may not help. If you know of things to do to avoid Frozen Shoulder or you just want to share your experience then write in the comments below.

We all need somebody to lean on

The next part of this blog isn't strictly shoulder related. In fact, it has nothing to do with shoulders in the physical sense. However "if you need a shoulder to lean on" is a well used metaphor when it comes to offering yourself in the support of others. So, what I really want to talk about is support and, in some quarters, the complaints about lack of support specifically from the #GBDoc community.

I have no complaints. Absolutely none. From the first few days on Twitter, I have always felt welcomed and engaged by many members of the community. I have become good friends with some. Others have offered valuable advice and direction to me. It's rare that I will go a day without some form of engagement within #GBDoc.

That seemingly isn't (or hasn't been) the case for a few others. At first, it seems inexplicable. Why would people choose to not engage or help specific people? I think I've found one reason. It may not be the only reason; For the ones complaining there is a common theme: Aggression. 

It's not a case of continuous aggressive or angry tweeting. It may not be frequent at all. It happens often enough, though to turn people away. That aggression may materialise more when a complainer doesn't get the desired response or support to their tweets. It can be passive-aggressive in nature or just outright insulting. They feel entitled to responses and when they don't get them their first port of call is to state their achievements. You might remember some, as you read this. Here are a few which come to my mind:

- I've had diabetes for 26 years and I've been tweeting for 5 years but nobody answers me.

- I have a PhD but I'm never listened to.

- I've done all of this to raise awareness of T1D.

Are we, the more mild mannered to blame for their neglect? Should we turn a blind eye to the anger and sense of entitlement and feed their needs? reply to their every tweet? buy their merchandise? offer them a place at conferences to speak?

I think not. 

Nobody is more important than anybody else when it comes to online peer support. We're lucky that it exists! and as previously mentioned in this blog, you only get what you give. Be kind, offer your shoulder to support others in their time of need and you won't ever need to worry when you need a little attention.

Influenced?

Influenced not Influenza. Get your Flu jabs!

Now that's off my chest, on with the blog and let's get straight to the point - I've been... "labelled"? as a Diabetes Influencer but it's not as bad as it sounds. I won't be found posing on Instagram (more than usual) in photographs wearing my Mankini, trying to sell the benefits of a cinnamon-based diabetes cure. No, it's in regard to diabetes conversations on Twitter.

I like Twitter. I especially like the #GBDoc community and those who use it and the hashtag to give and gain support. It has undoubtedly improved my T1D management and opened many doors for me. My favourite door is the huge increase in new friends and, remarkably, they've all got T1D! So, I guess I talk about living with diabetes a lot, especially on the tweet. Never the less, I was rather surprised to be tagged into a tweet which led to this web page:

https://creation.co/knowledge/key-influencers-and-topics-in-the-online-uk-diabetes-conversation/

Yeah, there I am in that mostly illustrious list of people with diabetes, who talk about diabetes to other people living with diabetes, on Twitter.

How I make such lists? I don't know. Although! I once won the funniest diabetes tweet of the year. 2018, I think. I'm still proud of that one although I can't remember the tweet. Don't joke about diabetes, though. It's not funny.

I'm really not THAT funny and I certainly don't feel like I influence anybody. Others, it seems, think differently. That's fine. I'm happy to use my Twitter account to retweet good info and help raise the profiles of other, good causes. Twitter has scratched my back many times. It seems only fair to scratch it back, now and again.

I like to think I'm supportive of the diabetes community on Twitter. I answer my messages and cries for help, I acknowledge or reply to tweets to me, I take part in most of the tweetchats, quizzes and other "spin off" activities which are related to #GBDoc. I see myself as a supporter. I get it, mostly and when I don't get it I try to understand. Influencing seems a dangerous activity when the subject is health related. Diabetes varies so much from person to person. To offer general advice or solutions seems like dodgy ground. Remember, It's All About You

If influencing is your thing and your job or your sideline then cool. It's not for me. You drank your four cups of coffee today, didn't you!?