Monday, 6 March 2017

Learning to cope with an illnesss

Written over Christmas

It's  very difficult, when you are diagnosed with any serious illness, because you can sometimes feel all alone.

It's also possible that you don't know where to turn for support for advice, or support.

There are many websites around the internet for illnesses, many are dedicated to one particular illness or another,  where some cover a few types of illness, like dementia.

However not everyone can use a computer, let alone get access to the internet, so it becomes difficult.

Sometimes local hospitals have information displays with leaflets. Failing that your local library may be able to help.

Sometimes people would rather sit down and speak face to face with someone, rather than speaking to a person over the telephone, but I suppose that is because you are talking to a total  stranger about your own personal health problems, and that can put extra stress on to you,  or a loved one.

If you are talking to a stranger you may well forget all of the questions you have, so which ever way you do it, you should always write your questions down in a note book.
However my  problem was, that I would write notes down, but would and still do forget to take the note book with me.

I guess that is where local charity branches come into their own, because these places have dedicated staff who can help to talk things through.

When I was first diagnosed as having early onset Lewy Body Dementia,  our consultant explained as much as she possibly could about the illness, and then directed us to our local Alzheimers Society office.

We were also supplied with sheets of paper explaining the illness and the medication, which we took home

However there is still a great deal of stigma around this illness, and I have heard many people say, that they will not go near to an office with an, Alzheimer's sign  outside,  because of the stigma.

I guess that goes back many years, but if you don't go in, you may never get that support , that you badly need.

But it's worth remembering that, you are not alone, as there are  thousands of people in the UK alone, with one type of  this illness or another 

After that it's not a bad idea to join local support groups if there are any near to you, because then you get support from other people with the illness.

We have to accept all of the help we can, and listen to others who have the illness,  we can't do it alone, and it's foolish to think that we can.

By talking about it you help others as well as yourself, so don't bottle it up

After my diagnosis I was told to keep notes about my graphic nightmares, and other problems. But I could not write as well as I used to do, and looked for an on line diary.

This failed simply because there was not enough space to write my notes on.

People say that after a bad night, you simply cannot remember what the very bad dreams or nightmares were about.

But these are so graphic that I can remember them in great detail the following day, so it's easy to jot down notes about what happened, especially if you lash out, and  cause damage to furniture or your wife as I have done before.

In the end I found an online blog, and started to write all about the illness as it happened.

I guess that when your brain goes like mine did, you don't always see the obvious, and I did not really understand everything that was on the Web page. 

I would sit and write notes on this blog, never really taking on board anything else.

It was only about a year later that I noticed a section heading labeled "Audience".

At first I ignored it, then after a while I went back and pressed the button, to find that my personal blog was being read around the world.

This gave me a big shock, and I decided to try to delete it all. However my wife stepped in and told me to leave it.

It was then that we noticed another Heading for comments.

I thought it odd to have a section called that, because I did not see the need for it.

However after pressing it, we saw pages and pages of comments from people all over the world.

Many of these were thanking me for writing my problems down, because it helped them to understand what was going on in their lives.

I have since learnt that this is now read in 114 countries, by nearly 200-000 people, and is used in various Universities around the world for a teaching tool

People always write to ask for permission to use sections, and that is fine, because it could help others

So this was my first taste of blogging, and even today, I find things that I had not noticed before.

I have gone from an Electrical Engineer where every little detail was important, to the position where I just don't see what is in front of me at times. It's weird, but also distressing as times, wondering where it's all going to end up

But this has kept me going, and that's important. I am now looking forward to getting out with my camera, and then writing about it again

However these days there are many blogs on all sorts of topics, so if you can use the internet is worth looking around

Many of these blogs like Google Blogger, or Word Press are free to use, and it's a good way to pass information on as I do.

Other places to get support are the various sections on Facebook or on Twitter.

That was one way I cope with changes to my brain, although there are many other ways, to remain active.

But what I am trying to say is this.

After a diagnosis, life can be difficult and distressing at times, especially after a diagnosis like dementia.

But we have to remember other family members, who may well have  be struggling to cope at the same time, yet they did not show it.

When it hit me, I really did not understand what was going on, I honestly thought that I was going mad, because nothing made any sense at all.

It was difficult and hard to understand why,  I just could  not do my job anymore, and could not remember how to do electrical work. It was as if my memory had been partly wiped.

To this day, things are no different, even putting a 13amp plug on can be stressful, yet I rewired a college Chapel?

But things like my family, our dog Ben, and photography on good days which  kept me going early on

These days it's my  grandchildren and family who are there for me. 

It takes me longer to to plan and work things out these days, the same things that would have taken a few moments can now take hours or days. Along with that,  as I said before I don't see the obvious anymore

I get very agitated when I write things out,  and then repeat a complete sentence without realising

I admit that there are days when even basic settings on my camera can be a nightmare to work out, but that's life with a memory doing its own thing, yet it's about the only hobby that I can still do,  which is not dangerous.

My woodturning became too dangerous and everything was sold off to stop me using it.

My woodcarving is going the same way,  as I am losing my coordination at times.

So it means that all of my tools for carving will have to be sold off, before I do myself damage, but I have accepted this and moved on

Yes there are times when I could have thrown the towel in, when things simply did not work as they used to do, but I have to accept this life now and move on while I can still do it.

I admit that I have been depressed at times, but managed to get myself out of it, and do something, but that's common in this illness.

I always say that there are others in a worse state of illness than I am, so for my families sake I must keep going.

Technology is wonderful if you can use it, however I am struggling more and more these days.

So it's finding a good day to write things down

Blogs around the world

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