Tweetchat – Diabetes and other illnesses

Wednesday 26th July, I popped my tweetchat cherry. Yes, ladies and gents, I am no longer a tweetchat host virgin!!
After the last couple of weeks chats with @Type1Adventures and @type1bri, I asked if I could host one too. I’ve always felt quite strongly about the subject that I chose, ‘Diabetes and Other Illnesses’. Here’s why.
At 18 years of age I was diagnosed with Type 2 diabetes and put on tablets. This was a GP diagnosis based on a urine test as I’d been to see him about a persistent sore throat. At the age of 25 I was rediagnosed as Type 1 following a miscarriage and a review of my care. Jump forward to the age of 38 when a whole load of stuff started to go wrong for me health wise. It took 2 years to be diagnosed with diabetic neuropathy. Things continued to get worse for me until the age of 43 when I finally got to see a different neurologist who quite quickly (in the grand scheme of things) diagnosed me with Multiple Sclerosis. By then the left half of my face was permanently numb as was my left hand and foot. I also have gastroparesis. So, I was interested to see how other people got on with Health Care Professionals (HCPs) and their diabetes.
Here is a summary of the serious part of the chat:

Q1 How do common illnesses such as coughs and colds affect your D? At what point do you seek medical help?
Most of us self-treat unless symptoms last for more than a week. If you have any questions, your first people to ask are the Diabetes Online Community. If you go to the pharmacy you either lie about having type 1 or admit it and get referred to the GP straight away by them.
Most of you get high BGs when you have any sort of bug, normally before the bugs symptoms show themselves.
Q2 Do you have any other Long-Term Health Conditions (LTCs) that you live with and what are they?
I was really surprised at the number of people who had other LTCs. The most common ones were thyroid problems, coeliac disease and anxiety & depression.
Some of the others were arthritis, diverticulitis, Chronic Regional Pain syndrome, glaucoma, neurosarcoidosis, uncontrollable eyebrows (yes, really!), Irritable Bowel Syndrome, graves disease, cancer complications, long QT syndrome, supraventricular tachycardia, autism, dupuytren’s, multiple sclerosis
So not only do we have diabetes to deal with but a wide range of other illnesses which must have a massive impact physically and emotionally.
Q3 Do you ever have problems with medications and treatments interacting? How do you overcome this?
Steroids seem to be one of the biggest problems which raise blood sugars to incredibly high numbers. Also, Beta Blockers reduce hypo awareness in some people.
Other problems faced were with pharmacists and doctors not warning us of the effects of some medications. One person even had to argue with his doctor about a problem between his thyroid medication and a statin that was prescribed. Why on earth should we have to argue? If we tell you something that concerns us, please investigate it.
Q4 Do you feel your HCPs work together to understand all your conditions and how they affect each other?
NO!! Absolute definite no. A lot of the problem is that computer systems don’t link up and work together and there is a definite lack of communication between departments and GPs. But there is also a large element of HCPs having a little knowledge about areas that are not their speciality areas. But a little knowledge can be a dangerous thing! I don’t know if it’s pride that stops them asking for help but they do need to realise that in many instances the patient knows more about their illnesses as they live with it 24/7. Scotland seems to be ahead of England in terms of joined up working.
There is also a lot of worry surrounding changes of personnel. You find a good doctor but they retire or leave and you then must form relationships with new people. Will they be as good as the last doctor you had? Will they have made themselves familiar with your case?
Q5 Have you ever been to an HCP knowing that there is something wrong only to have them put it down to D without investigating?
A few worrying answers to this one! One person was told that Diabetes only takes 5 minutes a day to look after! Complete lack of understanding on that one! Another claimed that if they were hit by a car their GP would blame diabetes!
Another person ended up with needing antibiotics for a pump site infection that was dismissed. Another person had an operation, the stitched wound wasn’t healing and that was put down to people with diabetes healing slowly. Ended up it was MRSA!! There was my case of decreased sensation being put down to diabetic neuropathy when it was MS.
But the best answer was from one pwd who said their GP wouldn’t dare to dismiss it as diabetes as he would Dr Google him to death in retaliation.

The less serious part of the chat mainly concluded that our favourite type of cake is lemon drizzle cake and that there should be no place in a cake for vegetables. Also, some of the male participants queried whether having a wife counted as a LTC while a certain someone, who shall remain nameless and grumpy, made smutty suggestions about date nights and hypolingus!! Also, one of us has a phobia of furry fruit….
As an experience, it was great! I was very nervous but once I had got my questions into 140 characters I was a bit calmer. Bri was looking out for me and kept the naughty ones at the back in order but I’d also sent him my questions beforehand in case I completely lost the thread and resorted to crying in a corner of my kitchen with the biscuit tin. I met a lot of new people at the chat but it was also great to see so many ‘old faces’ make an appearance. It felt like the old days. Some were there to be serious and some were there to have a giggle, both of which are fine. It’s all about getting together and having fun! We had over 40 participants in the chat!
The answers I got backs up my belief that if you think there is something wrong, FIGHT (although not physically) to be seen by the right people and get the right diagnosis. Make your voices heard!
I think there have been enough people asking to host until at least September but I think there is also talk of a calendar getting set up so that you can book which slot you would like to host. If you want to host I strongly advise that you do it. It was great fun and it was a chat FOR the community, BY the community. YOUR community.

Online Communities

I know its been a while, but here I am, back at the keyboard. The truth is that I haven’t really been away from it but my last few blogs have been written for others and my own ramblings have been somewhat neglected.

Events of the last week in the Diabetes Online Community (DOC) have stirred the fires and made me feel the need to put my thoughts down.
Before I start, I just want to point out that this is not a personal dig at anyone involved in the community and that the community is, in general, one of support and friendship from which I have benefitted.

My online involvement is mainly through twitter which I turned to when my diabetes team threw their hands up in the air and said ‘we think you should consider an insulin pump Jules, we’ve tried everything else’. I knew nothing about pumps so turned to twitter for guidance. So many lovely people answered my call for help, using the hashtags #diabetes #type1 and friendships were made as I started on my journey with the insulin pump.

Over time, a new hashtag was introduced, that of #gbdoc. Initially I think it made us feel more of a community but over time I felt that influences were creeping in. My face has never fitted, partly due to it’s comedic value but mainly because of my lack of confidence I think. At school I was the quiet kid (honestly, I was) and never one of the popular girls. I saw the gbdoc as a virtual coffee shop that we could all drop into and chat and laugh about things whilst drinking a latte and eating cake. Then the community seemed to become divided. There were people who had joined with their own agendas and seemed to want to encourage division. (Team pump v Team MDI – need I say more). I was also under the impression that the @GBDOC account would be owned and manned by the community but it was really just one person. This account became the self appointed mouthpiece of all people with diabetes and on a number of occasions I have had to DM this account and point out that the words used and the attitude portrayed in no way reflected MY feelings as a pwd. This mouthpiece did not speak for me.

So, going back to my school days, I put my head down and took a step back from the gbdoc. I keep in touch with my friends as individuals but I don’t take part in the chats and try not to give my view on things that may be seen as ‘different’. If we had memberships for the gbdoc, I would have happily resigned from it. I felt the community was being used as a springboard for other business ventures and opportunities and that is not what we were about. We were about pwd supporting each other. Even at the gbdoc conferences, although it was a great opportunity to meet tweeters in real life and perhaps learn a bit, I felt there was still no inclusion. I remember a really interesting discussion about misconceptions in the press. We all mainly agreed that we should have a uniform response to the press which we were all happy to be involved in. Our comments were fed back to the organiser but I never heard anything again. When I questioned @GBDOC on their aggressive response to a lady who had asked for meal ideas for her ill husband on twitter I was told ‘do you know how many journalists contact us every day?’ That shouldn’t be the main response of a community for pwd in my opinion.

Over the last week a number of issues have come to light that, in my opinion, puts the gbdoc in a bad light. A lot of these things surround Team BG and although TECHNICALLY this isn’t connected to the gbdoc, morally I think it is. The names registered with Companies House, the lack of filed accounts for these companies, the same person running them. When certain financial matters have been questioned on social media the @GBDoc response has been patronising. If somebody raises a concern then address it, don’t make light of it and deflect responsibility. By association the #gbdoc has been tainted and perhaps the time has now come for a relaunch.

The only good thing to come of all of this, and there is plenty of good in the community, is that I have felt part of the community again. There has been a resurgence that pwd feel the gbdoc is theirs, as it should be. I have spoken to lots of people on twitter who I haven’t spoken to for ages as, like myself, they have taken a step back. The GBDOC website clearly states that the community is for people with diabetes by people with diabetes. I don’t feel that has been the case.

So let’s try and make that happen. I feel a little bit Corbynesque here but the #doc is ‘for the many, not the few’. Let’s try and welcome EVERYBODY, offer that much needed support and empathy and get those twitter threads about biscuits (forever to be known as ‘The Great Biscuit Thread of 2017’ – @TheRhodri) going! Renew those friendships and don’t be afraid to have an opinion. We are all entitled to an opinion and we should all feel safe to voice our opinion in OUR online communities.