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.