Hi all

[Pixie74]

I was recommended this group for support so here goes.. I was diagnosed recently with macula dystrophy so my sight loss has declined dramatically, I’m still struggling with so much and can’t seem to get my head around it.. I’m hurting I’m angry crying, I’m 46 live alone with not much support

[Hidden]

Sending you big hugs XX these early days are so hard, but you're not alone. Everyone here " gets it" and even if we don't all have the same condition, or are at different points in our own journey, we all know what it feels like. I cried myself to sleep every night for 2 weeks on my diagnosis at age 54 but 6 years later I'm still working and driving.

I don't know if there's treatment for you which can stabilise your condition, if so that's good, either way, if you're in the UK may I suggest you call the RNIB and / or Macular Society support helplines. They are wonderful and will know of any local groups near you ( once covid rules relax and folk can meet up again). I've just discovered The Partially Sighted Society too, another good charity.

If you can, join one of the many Facebook groups supporting the visually impaired. The mac soc have a main one plus a " working age" group. The rnib have group pages for regions, and there are other groups offering technology and supportive aids advice.

Of course FB isn't as anonymous as this forum but I find being on both means you get a wide range of support options and info. Plus interacting with others in the same boat really helps.

Here you can safely say things you might not be able to say to friends and family or want them to know and that can be a vital safety valve.

Information is power, power is control, and the more in control you feel the better. There's no getting away from the fact your life has changed but there are lots of things that will improve that new life going forwards.

Make sure you make notes of what your doctors tell you and be prepared to advocate for yourself - don't be fobbed off or left waiting, chase appointments if they haven't arrived when promised. If you have issues with anything clinic related contact the ECLO ( eye clinic liaison officer) and they will help you.

RNIB can also help you claim any benefits you're entitled to. PIP is the main "disability" one for under 65s, not means tested. Don't delay claiming, they're taking a while to process at present. You have nothing to lose, they can only say "no" and you can re claim if things change later.

Depending on the severity of your sight loss and certification/registration status you may be entitled to free bus pass/ blue badge/ half price tv licence/council tax reduction. Rnib will advise you.

The government Access to Work scheme is fantastic so check that out too with your employer, they provided £Ks of home equipment for my hubby to keep working, they also provide help to get to work if you can't drive anymore, and helpers if necessary.

Sight loss is known to be akin to bereavement emotionally so be kind to yourself x it's going to take time for you to deal with it all. Just let all the emotion out, a good cry can be very cathartic, but then take a deep breath and think of the things you still have. Try to find something every day that makes you feel good.

Don't let the traumas of today spoil the possibilities of tomorrow x

Sending very best wishes going forwards xx

Ps

We've also got some "Useful Stuff" topics pinned here which might help you in these early days. They're a bit clunky to get to im afraid but scroll down the page, click " all topics" then you'll have to click on each to find them .

[Pixie74 in reply to Hidden]

I’m struggling quite a lot with it, I am under the rei for support and I do have a support worker but she is leaving me next month.. it’s a daily struggle and I’m trying to cope as best I can... sadly there isn’t any treatment for my disease so I need to deal with it..

thank you for making contact xx

[Hidden in reply to Pixie74]

Of course you're struggling, anyone would. Don't beat yourself up about how crap you feel, don't tell yourself you should be over it by now, but DO take each day as an opportunity to start balancing the crap with the good, however small that might be. You will get through this xI hope you get all the practical help you need soon x

[Pixie74 in reply to Hidden]

I just don’t know how to feel one minute I’m angry the next I’m bawling my eyes then I feel sorry for myself and then I question myself why me sorry if that’s wrong xx

[Hidden in reply to Pixie74]

Nothing is wrong in how you feel. They're your feelings and you're 100% entitled to them ! It's all overwhelming these early days and covid doesnt help.Just want you not to drown x

Keep an eye on the beach

[Pixie74 in reply to Hidden]

It’s the anger then the guilt then feeling frightened then the tears.. it’s not helped with covid but now it’s like I don’t want to leave the house x

[Hidden in reply to Pixie74]

I find when overwhelmed by emotions that I just shut down. Don't want to see or speak to anyone, dont want to go anywhere, just get myself lost in a good book that takes me away to another world.And spend a lot of time crying in the bath, then eating too much choc.

But I know I can't live like that for too long.

Have to pull myself up by my bootstraps and climb out of the pit of misery.

I usually start by looking at the sky, listening to the birds, watching trees sway in the wind...... anything that gives me a little perspective.

I think about the friends and family no longer with me, or those currently battling cancer, and decide I'd rather have a limited life than the prospect of no life.

There's a beautiful world waiting for you to take part in it again when you're ready x

I can recommend counselling, it's far too hard to do this alone x

Did you call the mac soc yet? They have telephone buddies I'm sure would help you.

[pinkperfection]

Oh dear Pixie as eyesight says don't beat yourself up. We have all been there and I also felt distraught at the thought of losing my sight.I still get upset if I think about it but up to now I have one good eye. As Eyesright says you need to give yourself time to adjust. The Macular Society is very good at supporting you. I know I rang their helpline and spoke to someone who was very helpful and kind. There leaflets are also very useful. Try to stay positive and hopefully things will get easier.

[Pixie74 in reply to pinkperfection]

Thank you. I’m still trying to come to terms with it..

[Hidden]

If you can, check out YouTube vids by BlindlifeSam.He has stargadts. Does video demos of equipment etc and talks about his life.

Very uplifting.

[Becky_MacularSociety Partner]

Good Morning Pixie74,

You will find a lot of support here, lots of people who have felt what you are feeling.

Just to make you aware, if you are in the UK, we do have a free telephone counselling service that is available for people with their conditions and their friends and family as well .

To be referred then you can either contact us on 0300 3030 111 or fill in our online form:

macularsociety.org/form/cou...

It takes a counsellor a maximum of two weeks to make the initial call. Our counsellors are fully trained and the majority have sight loss themselves. Sessions consist of approximately 6 sessions of around 45-50 minutes each.

Best Wishes,

Becky

Macular Society

🙂

[Pixie74 in reply to Becky_MacularSociety]

Thank you for taking time to reply to me.. I’m really struggling and so low at the mo xx