A Blog on Blogs...

[macularsociety1]

The word ‘blog’ stands for ‘web’ + ‘log’.

Essentially, it is a place where you can log things. You might be asking yourself, ‘What kind of things?’. Well, really anything relating to how macular disease affects your life.

So, you can write about anything from how macular disease impacts you, a friend or family member, to the side effects of drugs, to how it makes you feel (whether emotionally or physically).

One of the best ways to foster a sense of community is to post a testimonial blog: when were you diagnosed and what has your journey been like since that point?

Blogs can be as short as you like so don’t feel you need loads of content. Simply post what’s on your mind.

That’s it. Now go blog so we can read and comment!

[tallyho]

Ok well here goes. Write a blog - what an invite!

So my name for this purpose is Tallyho. This is gonna be the only inaccurate thing I will write but incase this all sounds rubbish I dont want to use my real name.

So why am I here? because i want to share some of my story just incase there are others out there that too can identify with my experience and perhaps they and i can think we are not the only ones, as it seems a little like me I am feeling like that. I have absolutley nothing against the older generation I think they are great but when you sit in a eye clinc for 3 hours once or twice a mont for 18 months and you are the only patient there of my age (because the others of your generation have bought their parents) it is difficult.

Ok so I have type 1 diabetes and have had so for 16 years now and with that now the complications that can go with it. My vision issues started in May 11 (although my retinopathy started in 2008) when I visited my opticans thinking my sight had got better since using an insulin pump I was to find out infact that it had got worse and the Amsler grid showed there was fluid in both eyes.

So moving on to now some 18 months later. I have had various treatment to no avail I have refractory diabetic macular oedema, cateracts, maculopathy and retinopathy which is stable . I have had 5 lots of laser treament in my right eye and 2 in my left I have had 5 injections of avastin in my right and 10 in my left but unfortunatley for me ( and I think I am an exception) the treatment has not worked and now my vision in my left means I can read just the top 2 lines of the LOGMAR chart at 6 metres (My sight in my right is far better).So life is a little difficiult.

I have now lost my very much loved job and I think soon will lose my licence for driving since I have issues with contrast and colour too. HOWEVER I come across many in a worse situation than me and my hospital are doing all they can to get a treatment that might work. We have talked about steroids but it was found | was a steroid responder so now we are waiting to see if i can have Lucentis since NICE are perhaps changing their minds on the use of LUcentis for those with VI-DMO and macular thickness of over 400 micrometers mine on Thursday in my left eye was 566. They are also talking about me going on the MATTIS trial? which I have never heard of but I think uses a different drug other than avastin and Lucentis but am not sure.

I have to say I think the MDS have been absolutley fantastic in their support for me not only on a personal level through counselling and information but also in the way that they have with other charities helped NICE to change their minds about Lucentis. My passion is that The Macular Society ( as it is soon to be called ) will focus a bit more on people like me who have diabetes which causes vision loss. It has benn so invaluable to me and it would be great if others in my situation knew of an organisation that could support them as well as they have me. So what would i love to do? - be a voice for those people in my situation with visual loss due to diabetes and let them know they are not the only ones and if they look hard enough they will find the support and encouragemnt to lead a new although different kind of life.

So there you go. My first ever blog - if that's what you can call it! ( sorry for the spelling mistakes)