I have been disabled for some time now and it is not easy by any means. These days I am tetraplegic (paralysed from the neck down). My brain still works and I have a lot of thinking time. In the early hours of this morning unable to sleep I had an idea. I would like to share a few ideas to help others who face similar challenges. If these words help one person I will be a happy man.
1) Do Not Give up
This one is the most important. It is also the most difficult.
2) Grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
The words above are engraved in my brain. I highly recommend that you learn this and repeat it to yourself.
3) Research Your Condition
Personally, I think this point is very important. Knowing my condition has helped me accept it.
4) Understand Your Medication
A wise friend once said to me “All medicines are controlled poisons”. You should understand the potential side-effects and impact of your drugs. This can help you identify when things aren’t quite right.
5) Talk to Somebody
I have found talking to other disabled people very helpful. It’s the best way to get frank and honest responses. There are some great groups on Facebook. However be aware that some people can be quite negative. So don’t take it to heart too much. They might just be having a bad day!
6) Reach out for Help
Don’t be afraid to ask for help. If you don’t ask then you don’t get. Of course first you have to admit to yourself that you need help. I found that quite difficult to be honest.
7) Use Technology
The NHS has departments called “Assisted Technology”. They can provide you with various gadgets to help your daily life. For example, I have a box with a large pushbutton. I can just about push the button to select the various options. With this box, I can answer my front door and most importantly control the TV. The It sounds minor but this really changed my outlook on life. Your GP should be able to refer you to your local NHS representative.
You may also find useful my post on the Amazon Echo or How to Use a PC When You Are Tetraplegic
8) Do Not Bite the Hand That Feeds You
I have been guilty of this! My adoring wife runs around in circles trying to do the right thing for me. But sometimes I am grumpy and take my frustration out on her. So don’t forget that our nearest and dearest also have their own problems.
9) Know the Rules
Ever feel that the system isn’t treating you right? Your first step should be to read the rules. This applies to hospital waiting times, Disabled Living Allowance and so on.
10) Challenge Yourself
I decided to take the exams for an Amateur Radio licence. It’s something I’ve been interested in but never got around too. The Radio Society of Great Britain was really helpful. I did not have to take any tests that required physical input. Thankfully I passed the exams. I now talk to people from all over the world. It was well worth the effort. You can read more about this in my post Paralysed Using an Amateur Radio
So get yourself out for that coffee at Starbucks, or get round to reading 1984 by George Orwell. Or contact that old friend on Facebook. Making small changes can have a massive positive effect.
11) Understand Your Options
I always like to know what choices are available. Whether it be for your health or your dinner don’t be afraid to ask. For example, you do have the right to choose where you go for treatment. In my case, I could choose the Walton Centre or Salford Neuro. Personally, I prefer to go to the Walton Centre. Being able to choose also helps with your mental state.
12) Filling in Documentation
Paperwork is a pain in the arse but it is necessary. Photocopy the form and fill in the copy first. You can use this copy as a test. That way you can easily make changes without it looking like a spider has completed it. I realise it’s an additional step but such documents should not be rushed in any circumstance.
If any form asks you to explain your daily life be very careful. ALWAYS document what you are like on a bad day, NOT a good day! I highly recommend that you research before filling in any document. There is a lot of good advice out there about what to put and what not to put. In some areas you can have an advocate assist you with filling in the form. If you have access to a photocopier always take a copy your documents for future reference. You can then use that copy as a reference should you ever need to reapply for something or other.
A couple of useful websites
Benefits and Work is a useful site to get information on ESA, DLA and other benefits.
NHS North West Assistive Technology Gives you an idea of what is available from the NHS.