Trying to control my emmosions

 I have noticed over the last year or more, that I am becoming more bad tempered, perhaps some would say moody. 

This is happening more and more, and I am terrified of becoming violent in the process. Even my daughter has picked this up over the telephone, and I am getting to the stage where I am frightened of upsetting her, or anyone else. 

So much so that I told my wife that I don’t want to be involved with telephone calls any more, in case I say something which will cause trouble. 

This has been going on long before this virus, and usually happened when a chest infection was brewing, but I just don’t understand why it’s happening now. I think my wife is frightened to tell the doctors, in case  I get put in a care home etc. 

While I can understand this, I think I would just give up if I was in a care home, because it’s not in my own zone. 

I think a lot of this is caused by the restrictions caused by COVID, and the fact that out local park is overrun by people driving here from other places, so they can run etc, but they are not keeping their distance from others. 

Coupled with this I am struggling to cope with a face mask, and struggle to understand what people are saying when they are wearing a mask. Along with this I cannot wear my hearing aids, because when I remove my mask it brings my hearing aids out, as well as my glasses.

Perhaps to many people this is nothing, but when your brain does it’s own thing, life becomes very difficult, I guess because we are out of our comfort zone.

I have also been  struggling with bowel problems since early October, and this is causing extra stress going to the toilet 4-5 times a day, and sometimes during the night, not knowing if I will get there in time.

I am having tests, but found that since i came off dairy products life has become more bearable. However the consultant seems to have other ideas, and unlike our doctor who seems pleased that we have worked something out, I feel the consultant will be less forgiving. 

Only time will tell

Bad nights return again

 After a light dose of medication, the nightly horrors of graphic nightmares  I struggled with for a few years,   seemed to stop, and I thought that I had got rid of them.

But these things have returned again, and it's becoming stressful.

These started a few years ago when I was diagnosed as having a form of Lewy Body Dementia / Parkinsonism. 

The problem being that you act these graphic nightmares out, and can remember them in great detail during the next day.

Nurses are told to speak quietly and touch the person going through these, in the hope of bringing them out of this

But as I pointed out to graduate nurses while giving a presentation last year, this can be highly dangerous to anyone trying to help.

As my wife has found out at times, that is hazardous, because she can become part of the nightmare, and then get hurt in the process.

My wife tried this one night and ended up with a nasty black eye and bruises after one nightly horror show, and that was upsetting for me, as well as for her.

This proved that it can be hazardous if you get too close to someone going through one of these nightly horror shows.

I understand that  I lash out and kick out, once these things start.

There seems to be no reason for these, as many of them bare no links to reality, and that makes life hard to work out.

A few years ago the medication was stepped up In the hope of stopping this, but it was so bad one night that I tried to climb out of a third-floor hotel window, in the hope of getting away from the nightmare. Luckily for me, the windows only opened so far,  so I never got out

A friend of mine who lived with the same illness thought his dreams bore a resemblance to pictures of Terry Pratchett's books, and I agreed with some of this.

After a nightmare, if I am lucky enough to wake up on my own, I usually get up, and either sit in the bathroom or go downstairs for a while, if I am not feeling wobbly.

However sometimes,  these things start off all over again from where they had stopped, and that is terrifying

I think part of the problem is that when I  wake up, I cannot tell the difference between the nightmare or reality, and it seems to take a while to settle down.

A few years ago after a flood-damaged our home we were moved into a small flat, and one night I had the worst night I had ever had.

I was convinced that I had woken up from a nightmare and had gone into the sitting room, had a cup of tea, and had then gone to the toilet. This happened three times, then I eventually woke up and realised that it was all part of the nightmare.

My wife said I woke up in a total  panic

Although there was no damage at all, this shook me rigid because I was convinced that I had been up three times, and had gone to the toilet.

Having totally demolished two bedside lights and other things, there is now nothing important next to my side of the bed.

After seeing the damage after a bad night, it brings you down to earth a little

But I could describe everything in great detail, when I wake up,  which is not nice.

I confess that I am absolutely terrified of ever being sent into a hospital, because I have no control over what happens during these nights, and the last thing I want is to be charged with assaulting a nurse or anyone else, while I am going through a night like this.

Although things are not as bad as they used to be, it's still difficult to understand.

I often wake up in the morning feeling very tired and sometimes ache, I guess because of the lashing out.

While it's difficult for me it must be worse for my wife, because it means that she must keep her distance while trying to wake me up

When this all started, I thought that I was going mad,  but I understand that it's all part of the Lewy Body Dementia.

Perhaps it also accounts for my deep sleeping during the day.

Processing Information in Dementia

 Life can be very difficult at times when you are trying to process or understand what is happening around you.

I stopped going to meetings etc, because it took so long to understand and process, what was being said, and by the time I understood what had been said, it was too late to answer.

The same thing happens when I'm outside and I meet friends or colleagues, and sometimes misunderstand what they have said.

This can be embarrassing or can cause problems, because they may think that I am being rude.

Many friends and colleagues accept that I have an illness, and take me as I am, and if I make a mistake, they don't take offense, but not everyone is as understanding these days, and far too many take it the wrong way without thinking or taking onboard my problems.

This is not intended, it's just a fact of life these days, and although upsetting, I have to accept it and move, on hoping that they understood my problem.

However it's not just the spoken word, it also happens with technology, my brain does not cope easily with modern technology.

Many people expect me to cope with games and gadgets on things like Facebook etc, when in fact, I simply don't always understand them all, and this is frustrating, not just for me, but I guess for others too.

This is also one reason why I don't play board games these days, because I need more time to process things, and people get annoyed and frustrated which does not help me, or them

This is i gather all down to my slow processing due to problems in my brain, although upsetting at times, I have to accept it, hoping that others will allow me time to process the information and answer in my own time.

In this fast-moving world, people don't always allow us time to take on board what has been said, or what is happening, and then start to answer themselves, which in many ways is rude and patronizing.

There are times when I struggle when I'm shopping because I need to take on board what is happening around me, and that's not always easy, because people move so fast in all directions and speeds.

This, in turn, leads to balance problems, because I tend to feel unsteady, or lose my balance if someone walks in front of me, and that can make people assume I am drunk when it's all down to balance processing the information in front of me.

There are times when this causes problems when I'm at the doctor's because I need to take on board what has been said by the doctor before I answer, but this is why my wife always comes with me, so she can answer questions I may get stuck with,

My wife has said that it may look as if I don't want to answer the questions myself, when in fact it's all down to my processing speed or lack of it.

In fact, being at the doctors can be very distressing these days, because I have to remember why i am there, and anything that's gone wrong, which is not always easy, especially when it comes to explaining them properly and clearly

Another problem these days is the fact that I can't answer a simple question straight away, and need time to consider what has been said before I answer.

I recently had a problem with a telephone call from a consultant, who was asking about my stomach and bowel problems. 

I had just had a scan, so he said I did not have cancer, something which I had not considered, because I have had diverticulitis for years only its got very bad these days, so I need to be close to a toilet most of the day as I am going sometimes 4-5 times a day, and sometimes during the night. It feels as if my body is not processing food properly, and its going straight through 

However after saying I did not have cancer, he seemed to lose interest in anything else, and I confess that I got confused and could not remember what I had already said.

These people simply do not understand how bad it is to remember things like symptoms, when your brain is struggling to cope.

I had notes written down for the consultant, but when I was caught out I forgot where the notes were.

I know this also causes problems at home, and my wife must get very agitated with my lack of response. Simple questions can cause problems at times, and it must upset my wife along with other people

There simply isn't anything I can do about it, I just have to think things through carefully and then answer.

I have been caught out many times when someone has asked me a question, and I've answered wrongly, simply because I picked the question up the wrong way, I thought it meant something else.

Usually, if my wife is there, she will support and correct me, and that in some way does help out, although it's upsetting to know that I've made possibly a bad mistake.

It also annoys me to understand that I occasionally need someone to correct or support me.

Things that used to be simple while I was working, like reading letters and emails, now cause problems, and I usually let my wife read them, before I go anywhere near to answering them, because I sometimes misunderstand what they are about, or what they are asking.

However loud music can also cause extra problems these days due to him the fact that I seem to have acute hearing problems.

Shopping is a complete hazard these days, due to the fact that most shops seem to have loud music blasting out all of the time.

It's things like this that make me feel that I am starting to lose control of my life.