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Reassured

by corioboria @ 20 Nov. 2006 - 22:56:22

I'm a bit late coming on tonight. This is mainly because I used my precious evening computer time this evening for a bit more detailed surfing around and about my new 'condition'.

I must admit it was a really big shock to go into the clinic on Saturday, thinking that there was a 15 minute procedure that could give me 20/20 vision, and come out realising that not only was that not the case, and my eyes are going to need close monitoring and treatment by specialists for the rest of my life, but that I have a real 'condition' for which self help groups and charities exist, and whose most severe sufferers are registered disabled and wait around for transplants, unable to work or lead a meaningful life. For someone whose health has always been excellent, barring the usual range of minor ailments, this has rocked my world somewhat.

However further research and a few frantic posts on the self-help discussion forum later, I'm much reassured. The typical progression of this disease is that it stablises around age 40, which for me is next year. If, as I suspect, I've always had it, and 20 years after first wearing glasses I'm still able to see with them, then this is likely to be a very mild case, and hopefully I will not have to go through some of the horrors described by some of the other participants.

As one very helpful moderator on the site pointed out, there are many people who only have mild symptoms, but they don't hang around on the support forum - they get out and live their lives with no apparent problems. So the only stories you see on the forums are from people who are struggling. That was a great help as my first impression had been to freak out at all the horror stories.

So I'm somewhat reassured. I've booked to see my GP next week for a referral to the eye hospital, but I don't feel in any great panic any more.

On the subject of my stepfather, things are not looking so good. He has completely lost the ability to stand by himself and/or walk, and apparently was unable to tell the doctor when he had last walked (which considering it was only last Friday shows a considerable confusion).

Mum is bearing up quite well. She is enjoying the freedom from caring for him at the moment. She was talking about all the wonderful food that she could eat that he didn't like, and how she could watch what she wanted on the telly, at a normal volume. She's even been using his recliner chair, and says it's all luxury at the moment.

She seems to have steeled herself to the fact that he might be in there for several days or weeks, and is determined to enjoy herself while she can. But she avoided discussing the possibility that he might not come home at all, and I'm not at all sure how she will react if that proves to be the case.

From my perspective, the more days he lies around in a bed without getting up and walking, the less likely he is to be able to get back to it again, new medication or no new medication. I'm not a doctor, but it all looks a bit gloomy to me. And Mum certainly couldn't cope with him at home if he was a complete invalid - she's stretched to the limit looking after him as things stand.

So will those of you who pray, please say one for my mum and stepdad. I'm not sure I honestly know what result I'm praying for - all I really want is for my mum to be happy, however that can be achieved.


 
 

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[Visitor]

2006-11-20 @ 23:09

Of course. From the sound of it, I hope that your mum will see that she needs her strength for him as much as her, and if it means that he needs to have long term care, she is not desserting him. I think that is the hardest part of coming to terms with that. My dad has parkinsons, but both my sister and I are nurses, and with my mum having angina and COAP, we both feel that there may come a time when he will have to have long term care. It's ok at the moment, he is still very active, and his brain is as sharp as it has ever been.
I am glad, if that is the right term, that your eye problems have been discovered, and that there is a good possibility that they won't get any worse.
Fingers crossed for you all.
Take care.
*hugs*

[Visitor]
http://bloggitygoodness.blog.ca
2006-11-21 @ 01:21

I am so sorry for your step-dad's poor health.

I am glad you clarified your eye troubles because I have been worried about you.

I will say prayers for your mum, your step-dad and you, of course.

My husband was recently diagnosed with symptoms of macular degeneration. He is 46 years old. But, he could remain in limbo for years before his eyesight truly fails. I insist we focus on the here and now and plan our life accordingly. I always say to him, let's do this before your M.D. comes! We laugh about it but it is true words to live by...

God bless you, my friend, your children, your husband, your mum and your step-dad...

[Visitor]

2006-11-21 @ 09:13

I truly believe that everything will work out for you and your Mum. Good things happen to good people and now you have a better handle on your condition, the only way is forward.

Love to all xxx

sminchinsminchin pro
2006-11-21 @ 16:54

Good luck for your appointment.

I'm sure everything will work out for the best.

Madame M [Visitor]
http://madamemeow.typepad.com
2006-11-26 @ 15:19

I hope all is well with you-- sorry so many things have been rough lately. Please keep us posted about your eyes!

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