I'm going blind. What should I do?

Mark_d

It's finally feeling more real that I'm going blind.  Nothing can be done about it, so what should I be doing?

Seeing the world/travelling is important to me.  I'm in the process of remortgaging to interest-only - to give me more spending money each month.  I've ramped up my holiday plans to do three significant trips each year, including three long haul destinations every two year period.

Is there a better way to see the world?  I hate long flights so, I couldn't do the long haul trips every 6 months.

Savvy_Sue

Is there a local organisation for visually impaired people in your area? If so, join it. 

Start listening to 'In Touch', Tuesdays, can't remember if it's 8.40 or 9.40 and the programme's page doesn't tell me. If you have special interests, there may well be back programmes covering them - on the home page there's stuff about boxing, cookery. There will definitely be stuff about travelling, holidays etc. 

I'd start future-proofing your home too - would expect RNIB to have suggestions about that. But for example, not having an all-white bathroom - if the toilet seat is a dark colour it's a heck of lot easier to see it as your sight deteriorates. 

Spoonie_Turtle

It's probably not very money-saving but train travel is a great way to literally see the world.  Or road trips (and ferries!), if you can go with someone willing to drive in the countries you want to see.

Another alternative to long-jail flights would be destination hopping, spending a few days in each place with shorter flights between.  (Although it depends what you feel is long-haul, because there's no getting around it being a long way to the Americas, from either side of the world.)

There's lots of MSE advice about how to get the best priced travel and accommodation.  And for you, investigate any discounts you might be eligible for, although the disability-related ones may have a threshold for qualifying.
However, you should always be able to request assistance if it would help you, whether you qualify for a disability discount or not.  


I'm aware the following is all unsolicited (and it turned out really, really long, sorry!) but these are some important points I've learned from having an acquired disability, not blindness but the principles are the same:

Daily living-wise, don't resist aids because of any stigma - they are tools to help, just like we wear shoes and use utensils and travel by vehicle because not using those tools can make life difficult, unsafe, inconvenient, or just plain exhausting. 
In terms of mobility aids in particular, when they become relevant, the right one(s) should free up mental energy so you can function better living your life rather than spending all of your effort on concentrating on where you're going/avoiding obstacles.  No aids are perfect but the right one should give you more confidence and freedom than without it.

Independence feels important, and it is to an extent - hence, make use of all helpful aids - but don't sacrifice things (or worse, parts of yourself) for it.  Autonomy is more important, being able to make your own decisions and being able to do the things you want to do as far as possible, and if you need help or assistance from something or someone else to do it, that's far better than not being able to do it at all.

If you're on social media of any kind, find blind people to follow and pick up lots of tips from, about daily living, travelling, dealing with difficult situations, etc.  It can also help normalise your situation to see other people living with similar circumstances, and give you hope that you can still lead a good, fulfilling life even if you experience it differently from how you experienced life before.  Especially if they travel or have hobbies you already have or might like to take up.  Fellow disabled people have been my own biggest source of help, encouragement, and acceptance.
- if there are support groups or clubs offline, they can be beneficial too, as long as they're not just groups where everyone *only* complains about how difficult it is, or where they play the Suffering Olympics and feel they get to judge who 'has it worse'; those kinds of groups are incredibly demoralising and just drag everyone down.  The same does go for online spaces, but it's often easier to leave those and find another than it is with offline groups.

Also if you can get used to assistive tech before you really need to rely on it, your brain will then be used to it so when you do need to rely on it, you'll know what it's describing and how to navigate from already being familiar with it.

Oh, and, don't shy away from asking for assistance, from your friends/family, or from strangers (especially staff) when you're out.  You don't have to be 'blind enough' or 'disabled enough' to 'deserve' help or assistance.  If it'll help you in any way, that's enough to 'deserve' it.  That's another area where seeing how other people live their lives can be really helpful, getting used to the idea that asking for help is absolutely fine, and also learning ways in which people can assist that will be helpful (so you know what to ask for and have the language for it).

Losing any ability or sense comes with complex grief.  It also brings different perspectives on life and how one experiences the world - and the two can certainly coexist, that's part of why the grief can be so very complex.  Accepting that and allowing yourself to work through the emotions is important - as is picking yourself up and carrying on even when it's difficult, but the painful emotions do need to be felt and dealt with, not unhealthily suppressed.

… apologies again for it being SO long.  I hope some of it might be helpful down the line at least!

born_again

Mark_d said:

It's finally feeling more real that I'm going blind.  Nothing can be done about it, so what should I be doing?

Seeing the world/travelling is important to me.  I'm in the process of remortgaging to interest-only - to give me more spending money each month.  I've ramped up my holiday plans to do three significant trips each year, including three long haul destinations every two year period.

Is there a better way to see the world?  I hate long flights so, I couldn't do the long haul trips every 6 months.

World cruise?

strawb_shortcake

As a slight aside, Wonders of the World I cannot see is currently on Netflix. It shows Chris McCausland travelling whilst blind. 

It was very enlightening and demonstrates how much the seeing take for granted. But does show that travelling whilst blind can be worthwhile

Savvy_Sue

On train travel, if you've currently got an over 60 Railcard, at renewal, look into the Disabled Person's Railcard instead. It's a teensy bit cheaper, but also allows a companion to enjoy the same discount, and there are no time restrictions. There may be something similar for coaches, IDK.

Mark_d

Thank you @Savvy_Sue .  I've found a really useful guide for how to make the flat a bit more suitable.  I previously looked in to a Disabled Persons railcard and it looked difficult to qualify for - but I will look again.

Mark_d

born_again said:

Mark_d said:

It's finally feeling more real that I'm going blind.  Nothing can be done about it, so what should I be doing?

Seeing the world/travelling is important to me.  I'm in the process of remortgaging to interest-only - to give me more spending money each month.  I've ramped up my holiday plans to do three significant trips each year, including three long haul destinations every two year period.

Is there a better way to see the world?  I hate long flights so, I couldn't do the long haul trips every 6 months.

World cruise?

Not actually not a bad idea for sometime in the future.  But right now I can't spare that amount of time and don't have access to the money.

Savvy_Sue

Mark_d said:

Thank you @Savvy_Sue .  I've found a really useful guide for how to make the flat a bit more suitable.  I previously looked in to a Disabled Persons railcard and it looked difficult to qualify for - but I will look again.

yes, I don't know what the qualifications for vision loss are, but for a hearing loss you just need your NHS battery book or a letter from your consultant (they are phasing out battery books but DH easily got a letter from the NHS). 

Just checked the Are You Eligible page and it says for vision loss:

Social Services official stamp in the space allocated on the downloadable form if applying online or on a paper application form

OR

A copy of your Certificate of Visual Impairment (CVI), BP1 Certificate (Scotland) or BD8 Certificate for being registered blind or partially-sighted

Now, I don't know how bad things need to be to get one of those certificates, but the next time you are at an appointment or in contact with anyone who might know, I'd recommend asking. 

You may also be able to get a Blue Badge - and yes, I know you won't be driving but it can be helpful if you are getting a lift from anyone to be able to park nearer where you're going. 

Savvy_Sue

Some other thoughts ...

Don't underestimate the importance of the right kind of lighting, in the right places, while you still have some sight. 

If you're going somewhere like theatre, cinema, stately home, tourist attraction, you may find you can take a carer / assistant in for free. My friend with poor sight is a member of the National Trust: when we go to a NT property we can park free with the BB, and I get in for free as a carer. And theatre and cinema may do a few 'audio described' performances, plus have you found that option on your TV? It's worth trying these things out sooner rather than later I feel. 

@Spoonie_Turtle mentioned aids: definitely think about things you are already struggling with, or feel you WILL struggle with. I know when Dad suddenly lost even more sight he had a gadget to help him make tea - it was a liquid level indicator. I was going to have a go at explaining how it worked but then realised I couldn't work it out at all! But it did work. 

It may be worth finding out if there is a mobility service in your area: again something my friend has benefitted from. I think you'd access that through Social Services, but your GP surgery might also know. When there were a lot of changes to the road system around our main station, they went out with the mobility person to navigate the revised layout, find the crossings etc. Although part of the advice was "this is horrible, I wouldn't try to cross here, walk down the road instead!" Also note that there are different kinds of white stick, and you'd almost certainly benefit from trying them out and having some training in whichever type seems best for you. 

Occupational Therapists - I think you'd access this through your GP, but may be Social Services - will help you work out what you need, and may be able to lend you some gadgets. 

I guess the moneysaving angle is not to spend a fortune on a whole heap of gadgets that you actually don't end up using - things which will talk to you (watch, alarm clock, screen readers) may be helpful, or you may get on OK with just very large versions of things, and magnifiers. AND don't underestimate things like Alexa: my friend can operate the lights on the Christmas Tree and all the other lights on a good day (on a bad day Alexa just plays dumb ...)

The non-moneysaving angle - and I really hate to say this - is that many people with either hearing or sight issues find that Apple do the 'best' tech for accessibility, and you can go into one of their stores to get help if you're stuck. I'm still firmly android, but my deafer siblings have all gone over ... 

Sncjw

Contact your local eye department or rnib they should point you in direction of an eye clinic liason officer. They can provide advice on benefits, cvi registration and general advice.