Monday, 13 November 2017

Balancing Act

Like many people, I find that life gets difficult, when you have more than one illness to think about, and this can cause extra problems with medication

Recently I was told that medication which supports us for one illness, can have the wrong effect on another illness which we may have

So in more than one way, medication can be a fine balancing act

I was diagnosed was having a form of Lewy Body Dementia,  something which never made any sense at the time, but I knew there was something wrong, because I was losing control over my job.

At first the doctors had thought it was something to do with  Encephalitis or something like that, because I had been very ill with pneumonia, but then the diagnosis of Lewy Body Dementia came out.

But at the same time I was struggling to cope while working, due to tremors and memory problems, which was hazardous, as I was trained to work on electrical installations  etc, and not the type of work which is easy when a tremor starts

I also had what was thought to be industrial Asthma, although I don't remember any tests being done.  However over the last two years this all changed,  when I finally got a diagnosis of Bronchiectasis and Emphysema

It seems that this all started when I was very ill with whooping cough as a child, and this Bronchiectasis damaged my lungs.

This was made so much worse because of years of working in industry.

After several  chest  infections a year, a new family doctor looked into my medical report and found that all of the chest infections were down to one infection which was deeply rooted in my lungs, and which refuses to go no matter what they throw at it.

I have found that after two weeks of antibiotics, I can be clear for around 8-10 weeks,   and then it all seems to start all over  again which is frustrating.

But during this time I had been told to use my inhalers more often than usual, so i carry one in my coat pocket these days. I also have an emergency pack of antibiotics, which I carry when I go on holiday

I also used a nebuliser to help my breathing and clear my lungs on a morning.

However this has now been  stopped  because one family doctor thought that the nebuliser medication was increasing my tremors.

It's very sad when this happens, but I guess it's all a learning curve, but the fact that the tremors got a lot worse, was enough for me to stop using the nubuliser all together.

The nubuliser had been a great help to me, but on balance the tremors were so bad last month that there really was no option

These tremors can be distressing at times when I can't hold a knife or  fork still at meal times,. 

So I  tend to eat using one hand,  while keeping the other hand out of the way.

Medication also causes problems with the Lewy Body Dementia, because the illness makes you sensitive to certain medications as I have found over the last few years.

I struggle with occassional graphic nightmares etc, and I was given medication to control it, but this caused more problems in the beginning, and had to be cut down to a manageable dose. 

So it's a delicate balancing act when it comes to medications, but luckily most doctors are aware of this problem, although there are  some doctors who don't always check before prescribing medication

However most medications are changed every so often if they don't seem to be working, and this causes extra problems with my memory, because I have to remember what to take and when.

Along with this,  I don't always remember how many times I have used things like inhalers. My brain just does not work remember things like this all of the time and that's distressing.

Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham...