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Thursday, 7 April 2016

DIARY OF THE LADY WITH RP


Good afternoon Bloggets. I hope this finds you all well? In the groups I share my blogs in you may find this is the only blog I have posted in there today I have written other blogs but one in particular is a very deep poem so dark and felt it wasn’t right to inflict you with that but if you link


Or


 You may find what I have written. One poem in particular is really dark so comes with a warning. It is about domestic abuse and I can tell you the lady in my poem had a happy ending. Well, happier than what she was living with.

 

Just another normal day here in the Blogget household. I have to go out later for a while so Waggs will be happy. Me? I guess it will be nice as it’s not a bad day. At least it’s stopped raining. Teen and Hub are at work. Tomorrow I’m at the big office doing my volunteering. I have a talk in the morning to give I think this one isn’t too big about twenty five people are expected. I haven’t as yet turned up to a talk and spoken to one person, like the organiser, but there is always a first time. Smile.

 

I’m sitting here on my sofa would love to write in our office but I feel bad for Waggatail as she gets lonely. Some people say that as long as dogs are fed and walked they are okay. No, not true. I know of a dog right now that is missing her owner so badly that she is sleeping outside his bedroom door. Only thing is, the person is not coming back to her. She is living with a relative but in the house where the dog owner was living too until they moved out. She will never see him again and yet she still lays outside his room pining for him. It’s so sad.

 

My Wagga came to us and was met by my newly then, retired guide dog Both Black beauty and Hubs old darling of a dog Long Chops. Waggs loved BB, and BB was a mother to Waggs. Just as she was some years before to LC.

 

Sadly BB died after a year of Wagga being with me. The day she left the house was really odd. Both Wagga and LC lay at each side of her like book ends. BB walked out the door never came back. Almost a year later to the day, LC walked out of the house. She never came back either. Now each time The Little Fella leaves in the morning to go to work with Hub, Waggatail cries. And throughout the day, she sits in the porch crying. It’s pitiful. I go and get her, play with her in the garden, take her to the shop and get her toys out for her, give her a biscuit and when I’m doing that, she is fine, but as soon as I stop, she cries and cries again. I talk to her all the time from whatever room I’m in but she never ever did this until LC died. She didn’t do it when BB died, so I think she has thought when LC left, this is two dogs’ friends whatever now, I have lost and will LF come back?

 

He is a funny one if he has been at work all day like yesterday he left the house at seven and came back home for almost seven in the evening. He took himself to bed after he was let out and fed. Wagga went with him. Now no way she should be tired. All she did yesterday was go to the post box. She sticks to him like glue.

 

When he comes out of bed, she follows him like a lost sheep.

 

She will love it tomorrow as there are a lot of people there for her to see and she knows LF is there as well as her Daddy who she loves.

 

Mind you, her Daddy is interviewing so not sure if LF goes in there with him or stays in a pen. Imagine if LF is in a pen with toys and Waggs is by my side at a desk? Haha. Let’s hope she won’t see him….

 

Oh two tinned tuna teen wasn’t a happy bunny today as there was no tuna for his pasta. So what did he do? Fried some more bacon. He had that for breakfast and now for lunch too? He said it was for protein. I said he could do without bacon as he was having steak for dinner tonight. No, he has to have protein every meal for his muscle definition. Doesn’t matter about his heart, as long as he looks good. My word.

 

I thought should I go to the shop and buy him some tuna? Then thought no, I bought eight cans of it six days ago. No more until next week. He will not be happy but I can’t afford to keep that going. Tuna isn’t cheap.

 

He said he would eat Quorn mince. Great, so I will buy him that next time I’m at the shop. There is turkey for tomorrow for his work lunch. Quorn is vegetarian so bring it on. I personally don’t like quorn mince at all, but teen says he likes it so be it. And it is fat free.

 

He came in last night at nine and at ten went to the gym after his dinner.  Got back about ten past midnight. He is in again at nine tonight. He is a good worker that is for sure, but I wouldn’t say he is enjoying his job now especially since his insurance has gone up to over two hundred pounds per month. As he has to now pay for extra miles. 

 

I have vases of daffodils. I love them. My favourite flower. I couldn’t face those flowers for years you know, as when I went blind my first thought about seeing things or not, was I would never see a beautiful yellow daffodil again. At spring I used to love picking them and looking at the joyful colour of the bright yellow. They were perfect flowers with stunning trumpet like flowers. So simple a yet represented so much. The start of spring which was the pathway to summer. They were so easy for me to see when I could. Especially against a dark vase.

 

For a long time I thought what was the point of them. I couldn’t see them anymore and of course I still can’t but I have brought myself round to face the fact I may never ever see them again but I feel them when I’m putting them in the vase and know what they still represent. I just wish I could look over to the window and get hourly pleasure from them rather than three times a week. Once putting them in the vase, second time refilling the water and third time putting them in the bin, oh there is a subject, bins. Hmm. Let me tell you about them.

 

Well we are on the list for our bin men to put the bin where we leave them. They have not done this since Christmas. I called to let them know of this and asked for them to fill in the form they sent me as I can’t. The lady on the phone asked if I could sign the paper, then send the letter back to her. I said or asked, how do we know where to sign? It went quiet on the other end. Then she came up with a bright suggestion. “I can send you it in larger print.”  I mean. I told her so many times I’m blind.

 

Well our last recycle bin went missing two weeks ago as the men didn’t put the bins back and we couldn’t find them it was really wild winds we heard them blowing so went to get them in  after the bin men left and Hub almost got knocked over trying to trace them on the road. So I phoned the council back up and told them he said we would have to pay for the bins. Some words were exchanged and he then said our bins would come by today tomorrow at the latest. Well I called them back today and guess what? There is no record of my phone call or request.

 

I got put through to complaints and spoke to a very nice man who told me he would try to see what was going on. Gave me a reference number and now I wait in the meanwhile I have to put out my rubbish recycling in plastic bags. So they will blow over our street I guess but at least we won’t have to worry about collecting them in? Smile.

 

So do I have to wait another two weeks to see if I am going to get a new set of boxes to recycle? Really our kitchen is a mess. Bags everywhere as I can’t put them outside as the wind will blow them or the rain will spoil the paper. Also rats? So let’s see what happens tomorrow?

 

My right eye is killing today. Top right corner. As if a thick needle is being pushed in there. My left eye feels like a finger is constantly in there and I still have that dirty view though I have no sight, I see a blurry mark. Doctors don’t know what it is as for my pains? They say it’s just RP. Hmm. Dam this eye condition. It’s bad enough being blind but to have pain as well?

 

For those with RP did you know in the UK, the first stage of human trials started in 2007? So nine years where have we got to?  Well now we have moved on to Europe and the US but where are we?  Still doing Gene therapy trials   well researchers are working on injecting a virus into the retina of a harmless virus to carry the specifically required gene into the retinal cells.

 

It is hoped that this will lead to the restoration of normal function or improved function in the cells that receives the replacement gene. So in short they are trying to turn off the faulty gene but this is proving to be really challenging. From what I can gather and the medical terminology is so difficult to understand, but in America and Europe are now working still, after this finding from the UK studies from way back in 2007. I have read that in the past five years there have been significant improvements but they are not saying what? Well, not that I can understand. I wish there was some plain English somewhere that said look, this is what we have done and are doing and want to achieve. I heard about cells being removed from the patient’s hands and placed into the eyes. That was years ago. About nine years ago. I have not heard anything since. Do you know of anything? If so please let me know and I will pass it on to our Blogget family. My email is


 

One step forwards and two backwards I think so far is my opinion. Please prove me wrong?

 

Remember if you have RP, There is hope now and there was none at all when I was a child. In fact as an adult I was told that there was nothing in my life time and nothing in my sons. Gosh, that was the final straw. I sat for so many years listening to condescending Doctors with their cold rude ways and after a Doctor told me there was no chance I would ever see or my Son if God forbid he developed this disease, he would never see either. I found my words from the bottom of my heart and calmly told him how I felt about the news he had just given me.  He was either Japanese or Korean. Not sure but after I gave my two minute talk, it went quiet. Gosh I thought, heck, I’m going to really get it here? The room was so quiet. You could hear a pin drop. Had he left the room? No, he eventually spoke. Asking if I would please leave the room sit outside the door and wait.

 

Heck, wait for what? Well, his words were meaningful so out I went I was with my ex-husband at the time. He asked me why I had to wait. I said I didn’t know. About eight or so minutes went by and he politely called me in coming to me taking my arm, unlike the first time when he just shouted for me to  come in his direction. Then watched whilst I struggled finding a chair.

 

Oh this time he led me to the seat sat down and said in quivering words how he was so sorry for his behaviour.

 

It wasn’t about scoring points but letting the machines know we have a heart. We have feelings we suffer we don’t just deal with the fact we either are going blind or are blind and there is no chance of a cure. The best result from that day was he I am sure will never speak to anyone in such a way again. Doctors now days are really quite nice. Polite and don’t treet you like criminals. Thank goodness.

 

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