I suppose frustration becomes a part of life with T1D. One of my biggest frustrations is that I can never have a break no matter what I do. A day of no injections or no pump on my belt, a day of not pricking my fingers, a day of eating and not calculating what it is and what effect it will have on me and a day to be irresponsible and carefree would be a dream. Everyone can dream and I think dreams help keep you moving forward but at the same time I have also had to have realistic dreams and not get caught up in endless impossibilities. For the first 10 years or so I would keep my ears open for any report or advice from the media or doctors that the cure was imminent. I would listen to the doctors say that we are close and it should be only 5 years away. I would hear of trials of transplanting a pig pancreas as a replacement. Before you think "what the hell?" The pig organs are the closest to ours. Before we started making synthetic insulin we sourced the insulin that we would inject from pigs. Anyway I would hear of the transplants and yes they still do them today but the anti rejection drugs that the patient would have to take for the rest of their lives were not only just another drug they would have to take but it was more harsh on the body then actually just managing the T1D. So the only time they do it is if the recipient is have a transplant of another organ that is going to keep them alive and then they will do the pancreas at the same time. I can't speak for everyone but I know that damaging my body and restricting my immune system to ensure that an organ is not rejected is not my idea of a cure. For something to be a cure I want life back with no substitute drugs or regime just to stay alive.
Another frustration that is only growing is that of the comparison and the preconceived idea in the world that there is only 1 Diabetes. That to have diabetes the person must have been a slack person who was over weight and ate an excessive amount of sugar which meant it was my fault that I got this condition and that if you get up and exercise then you could prevent and even get rid of it. As I write this I feel my frustration growing and trust me I have friends and family who have type 2 Diabetes and they know my views and to be honest my views are probably over generic as there are some exceptions however here we go - Type 2 Diabetes is a life style choice compared to T1D which is an auto immune disease. If someone says that they know all about diabetes because they know someone with T2 then that is like saying that you have read the first 10 pages and the last 10 pages of a 400 page novel and they know the full detail of the story. It is true that T2 can be reversed in many cases by controlling food intake, exercising and losing some weight. As the instances of T2 are growing at an alarming rate across the world the cost on the worlds economy is also dramatically increasing the main focus for advertisement is the quick fix. The main spending is for the people that can do something for themselves if the cared. T1D is nothing that any of us could have asked for or even prevented. It is our over active immune system that for some unknown reason sees our insulin producing cells in our pancreas as foreign bodies and goes about destroying them completely and utterly. This can either happen quickly as in my case or it can happen slowly hence why there can be a type 1.5. It starts looking like type 2 and can be can be controlled with tablets, diet and exercise and then as the immune system does its worst the tablets become less effective, the exercise needs to increase just to keep the same level and the diet needs to become even more strict. This is the slow road to T1D and also know as the honeymoon period.
I wouldn't wish this disease on my worst enemy but what I know it needs is the right recognition in the world as it wasn't long ago that this was a terminal disease and even now, even though it is getting less and less, people do die from T1D.
To me another frustration is the worlds governments and the assistance they give. Do not get me wrong there is help and assistance but where my frustration lies is that the techniques in managing T1D have developed and become much easier to lead a much more normal life however I do not believe that the governments have kept up to this demand. They still see that injections can be a suitable management path and that is it where as with the introduction of the insulin infusion pumps which allows a more natural life to be lead. It may not be for everyone but for kids it should be. The control across the entire day will allow for long lives. Still difficult and challenging but one of the best methods to help lessen complications. If the expense wasn't so great there is also the the ability to monitor BSL's continually so that patterns can be realised and you can see when your levels are rising or dropping. These would change the management from reactive to proactive and help parents with children with the disease and help teenagers and adults minimise the risk of complications and therefor lowering the cost on our already stretched medical systems.
Even though these frustrations exist we still push forward and try to offer education where ever we can. If one person listens and understands or even just asks another question the perceptions will change. The governments may change in time but I'm sure it will take a lot to get that done.
Life continues and and the frustrations can drive us to strive for change.
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