Wow "guys"! Thanks so much for all this sharing. I'm almost too scared to share this all with Brian but I think maybe if he realizes he is not alone he might actually join up and then he can chat and get "it" all out there. I feel so relieved knowing that there are so many people out here now that I can actually talk to and reach out too even though it is not in person. I do feel like I am holding this family together and it is taking its toll on me, but more so I feel so helpless that I cannot help my husband. I can see that just like you, Papageo, Brian does also need his space and time. With 2 young and loud boys, it’s very hard, but will try and do more for him on that. Wish we could get away from him for a weekend or he go away for a weekend, just to have that peace... might be worthwhile. I am so worried about his driving alone, especially as you mentioned the motorbike accident - I know it’s a real reality it could happen. Also, his work does not know the full extent of his disease. They don’t realize how much it takes for him just to get up in the morning. I think he also hides it very well at work. In SA jobs are hard to find, and although Brian is very good at what he does, he has a lot of pressure on him as he manages very big construction jobs, so long hours, meetings, pressure and deadlines, with lots of noise going on, and obviously being exposed to the elements daily does not help! I think he is so worried about keeping his job so provide for his family. He is the main bread winner. I wish I could take that pressure from him. We could manage on less, but keeping a good medical aid in this country is essential.
I just lost a good friend to cancer which was curable but she had no medical insurance, and was in and out of government hospitals waiting for tests and machines to be fixed, and in the meantime she was just dropping weight and in her last 2 months was totally bedridden, and finally passed away in may this year. By then we had got her in to a frail care facility as we could no longer manage looking after her between my Mom and I - she had no family in SA. It’s been a hard year with all that as well, I was devastated as if she had of had medical insurance she could have been tested and started the treatment in the January already at a Private hospital. So no matter what we need to keep both our jobs to keep a good Medical for Brian and our Diabetic son... Whew, so almost 3 years on and you still feeling the after affects? So sorry, I feel for you... I read some stories like this, and you know my friends said stop Googling; it’s no good reading all the negative stuff because people don’t by nature write about the good things. And if I become negative so will Brian, even if I hide what I know from him. I would not want to though. I feel it’s important to know exactly what is going on and what to expect. That way you don’t always feel alone and crazy. And in this support group and I can feel that people really are here to help and share and advise in the most positive way they can. So hopefully I will be soon on that end where I can help and advise others...
I am so sorry about your daughter Crystal. I feel for any parent in this group who has children going through this disease. It’s just not fair when children suffer. My youngest has it easy when I read what many of you parents children are going through. He has Type 1 Diabetes (Insulin dependent - his pancreas no longer functions at all) Was also caused funny enough by an autoimmune response to Chicken pox of all things when he was 2 years old, and the body went and attacked the Beta cells in his pancreas until they were all gone. So he lives for testing and injecting himself. He also has severe allergies and bed wets still at age 9 years because his kidneys produces excess calcium and they have been unable to find a meds to help. So for now he can never have a sleep over at a friend, or go on any school or sports tour because he has to wear adult pull-ups at night! My poor boy, but it’s good to share as now I see his life is bliss compared to what other kids are going through! Makes you so much more understanding and willing to help other people when you realize how much suffering is going on in this world that people are blissfully unaware of! God bless our kids... Sending prayers of love, light and healing to all of you, and your children.
Thanks for this amazing group!