Friday, 28 October 2016

Did I tell you....? Errm i forget

One of fibromyalgias many symptoms is well recorded and much joked about.
"Fibro Fog"

We hear :

"we all forget things"
"you're just getting older"

Blah blah blah yeah I've heard them all and much more (which ironically enough I can't remember right now).

But what about when it really starts to impact your life?

It was only yesterday when I repeatedly forgot about my heat pad in the microwave.
Yup. 2 mins and I forgot it was there.
I joke about being like a goldfish but it's really not funny.
Out of sight out of mind is my tag line.

Here's a description of Fibro fog I found on medicinenet.

Fibro fog: A type of cognitive dysfunction reported by many people with fibromyalgia. Also sometimes referred to as brain fog, its symptoms include difficulty with concentration, memory deficits, and confusion. The reason for the changes in brain function with fibromyalgia is not clearly understood. People with fibromyalgia experience fatigue and are at risk for sleep deprivation and depression, but research has not supported the idea that these factors are the cause of the so-called fibro fog. Another possible theory is that the nervous system disturbances in fibromyalgia affect the blood vessels of the brain, causing certain areas of the brain to receive less oxygen at times. Also known as fibromyalgia fog.

In addition to the above I would add that pain definitely fogs your mind. Its like a constant cloud making it hard to think straight.
Whatever the cause the reality is beyond frustrating, it can be really upsetting.

My own fog started gradually. It slowed me down but I was still functioning.
I'm not sure when it all went wrong but there was a point where it felt like I lost my faculties.
Some days are worse than others.
When I can't name common place items.
Can't remember how to work something I use all the time.
Can't remember what I did 2 minutes ago.
Get lost in a conversation because I've no idea what I've just said 2 seconds ago.

I'm not sure if it was medication related when I took a big dive but I remember chatting online to a friend and I could barely string a sentence together.

I was taking Lyrica (Pregablin), I'd only been on it a month when I was struggling to put my medication organiser back together. I didn't know what order to put the days in at the top so they'd come out right at the bottom.
This was my wake up call to stop taking that medication but also to acknowledge I had a big problem.

My cognition still has not improved to this day. Is it Fibro related cognitive dysfunction or is it a long lasting result of medication, or indeed a bit of both?

I'm not even 44 (yet) and I'm having to use reminders for reminders.
I need everything written down.
Files and links and bookmarks.
All tools to try and cope.

I rely heavily on others, I still find this hard. I was so independent and now I get talked about in front of me as if I'm a job that needs doing.
Family and friends luckily know now and do try to make allowances for me but its still embarrassing.
They don't understand how I can forget something they've told me more than once, sometimes I can see this frustration in them but what can I do? I simply cannot remember what I can't remember.
I have to write everything down but even at that I still forget to look at the note, the calendar etc.
Reminders go off but if I don't do the thing straight away I will forget again.
It is mainly my short term memory. Luckily I can still remember a lot of my medical knowledge, a lot of times I'll have to read something to trigger that knowledge though.

There are a few things that I do find help.

Medisafe - medication reminders app
ColorNote - notes app but you can save to your task bar on your phone so it's always on top. I put my To Do list up there.
Notebook app- I like ones that sync across devices.
Small note pad and fat pen, sometimes old school is needed. I leave that next to my bed.

Most of all though GIVE YOURSELF A BREAK!
Please please try not to feel bad. You're not alone.
Feel Free to show this to your family.
Help them see Fibro Fog is a real thing.
It's part of a very complicating and debilitating illness.

If you're that family member, first of all thank you so much for caring enough to read this, you've no idea how much that will mean to your loved one.

Here are a few tips /requests ❤️

Instead of getting frustrated with repeating yourself for the 100th time. Write whatever it is down for your loved one and put in a prominent place.

Perhaps save a reminder in their phone for them.

If you create an event on your own calender, add them to the event so they get notified. This way they'll know when you've got something planned.

Try not to make a big deal about forgotten words, or pauses in conversation.

Laugh if you can, I know we try. I do come out with some corkers. Sadly can't remember any but I do remember laughing so that's the main thing.

Anyway I've babbled enough, as always, thank you for reading.
Gentle hugs to all ❤️❤️❤️

Remember #invisibilityhurts let's stand strong together ❤️

1 comment:

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