Dementia: a disability?

I have recently seen a question that asks if you consider yourself being disabled living with dementia.   I think this is a really interesting question.

One of the meanings as in the English Oxford dictionary is:

Disabled:  1(of a person) having a physical or mental condition that limits their movements, senses, or activitieshashtag person not disability

Do I consider myself having a disability?  Yes I do have a disability because I am now limited but not restricted in what I do.  But the whole question of whether living with dementia is a disability is another question all together.  Some would argue no, because it is a life limiting disease not a lifelong disease, but even that argument does not stand up, because there are other diseases such as MS (Multiple Sclerosis), or Anxiety and Depression that can be equally life limiting.

I think the difficulties lay with getting a diagnosis in the first place.  Do you have a disability only when you have a diagnosis?   It would seem so.  Which brings me back to Dementia.  Speaking for myself, I consider it to be a disability because I can no longer carry out my everyday life in the way I used to, mainly because my mental capacity to organise things is diminishing.   Physically my body is not working like it should either as the signals and messages from my brain are getting more foggy.   Mentally, I can go into a ‘meltdown’ where I need to shut down in peace and quiet, alone, when things get too much to process.   So yes, I would consider myself to have a disability.

 

As I have said before I have two disabilities, but Dementia can mean the other is overlooked.  Fibromyalgia for me means living with constant pain restricting my physical abilities.  During a ‘flare up’  the pain and exhaustion is so intense throughout my body that I do very little other than sleep.  Fibro ‘fog’ melds with dementia to shut me down for a week or however long it is.   However, I may not tell anyone around me that I am in more pain than usual because I live with it dailyinvisible_disability_stickers-r449f8209b2e24f9e99cbbfda6d03ece2_v9i40_8byvr_324

Does this stop me doing things?   It slows me down certainly, but you can adjust your life to cope with it as much as you can.  Disability is a noun and identifies what hinders me, but does not stop me.

Disability is a word to bear in mind only, for each and every person has their own abilities or disabilities.

As per usual, these are my views alone and are not necessarily definitive information.

Crash…

That’s what I am talking about.  Last night the pain started.spikes1There is no position to sit with my legs to stop the pain, the burning of my knees, the deep screaming pain creeping with long spiky fingers along my leg muscles, shoulders, arms, wrists…..

And crash….the intense exhaustion that pushes me down.  Fibromyalgia.  I can never forget that I have it, but I do ignore it on the whole.   When the flare up comes and crashes me down there is no ignoring the invasion of torture surging around my body.   Blooming dramatic eh!   Anybody with Fibro or CFS or ME with tell you there is no drama about it, it’s ridiculously real.  Fibro Fog, heard of it?  Same with CFS – the foggy confusion turning your brain thoughts into a mush.   Well Mr. Nasty Fibro, Ive got Alzheimer’s you can’t get one over on me!   I have strategies, and things in place for the likes of you.

Living with dementia and coping with another disability is all about managing it.   I don’t take any medication for my Fibromyalgia.  Yes, that’s right, zilch, nada, none.    I have tried the usual Amytriptaline, Pregabalin and codeine etc, but each one has side effects.  I have already talked about this before but it doesn’t hurt to go over it.

Anything that makes my dementia ‘worse’, such as the dullness of thought, confusion, woolly headedness is not something I want to mess about with.   The medication for Fibro ‘wiped’ me out and I could not function.  Of course I know that with time they can get better, but I don’t want to risk losing any function for however length of time.  This is my choice.   I once had an intravenous infusion of Lidocaine and Oh my word it was the best thing ever.  ALL PAIN GONE after a few days.  I could walk more, I had energy, I could be NORMAL.   It lasted just under 5 weeks and then C R A S H  the pain returned.  Not just returned but with avengance.

To maintain this pain free normal life existence I would have to receive this infusion once every 4-5 weeks at hospital during over a couple of hours.  Not just me.  It doesn’t work for everyone but it did for me.  The sad part is that it is not available because of funding, I was lucky to have that one time funded.    One thing that came out of it was that I realised that without taking medication, my pain is maintained on a relatively even keel.  I have flare ups, like now, but they are never as bad as I hear some people because I live with the same amount of pain all the time.  No real relief but no mega crashes either.  I just have my normal bad crashes which I have learnt to manage.

As with my dementia I do what I can when I can, and when I can’t I rest.  I will cancel things if necessary and just stay at home, gently walking about when I can, sleeping a lot, and taking care of myself.   I will sit and sew if my wrists will allow me to, or ‘sleep’ through films on tv.dtcokxbxcaemejt

Having dementia and a co morbidity is just a case of looking how to manage both, in a relaxed and mentally chilled way, accepting what you can do, when you can do it, and riding the storm!

As always these are just my thoughts and opinions for what its worth 🙂

 

 

Diary thoughts with dementia

Sometime life feels like it’s in limbo.  Waiting for something.  Thinking I should always be active and not sitting alone quietly sewing or enjoying a film on TV.   Waiting for time..to what..pass?  I don’t know, maybe this is just how dementia feels like?    Does it feel unhappy?  Nope.  It just is how it is.

Sometimes when I have a diary full of meetings, and events, I just roll with whatever that day brings without feeling I have had any input into organising it but have simply turned up and been a small part of it.    A big hand that fills my diary and hands it back to me smiling.  “This.  This is how you will fill your time in a pleasant and meaningful manner“.  I smile as I take the diary and look with curiosity to see what pleasures I have for the coming week.

Then there is the ‘To Do’ lists I have written down on the righthand page of my Moleskine Diary.   This, however, gives me a hidden creeping fear, no not fear; anxiety, yes that’s it. Anxiety.  I have agreed to do this thing, and now I am scared that I cannot carry it out or finish it, or even start it.  Always in my head ‘I can do that’ , until the time comes to start it and then the dementia reality sets in.  The hesitation of indecision, the confusion of my own instructions where everything falls apart.  Followed by the quiet talking to myself – “I can do this, step by step.  Don’t overthink it“.  Then I when I finally start I am more confident to say whether I can do it, or whether to say I tried but it is now beyond my capabilities.   Admitting when you can no longer do things can free you up to do more of the things that you CAN do.

So, in reality I have a mixture of a Diary life, and my chill out self preservation life.  I attend meetings, give talks about my dementia, am part of a group working towards making my local town dementia friendly.  Then I have my withdrawal from the world life where I stay at home, alone, enjoying my own company, doing a bit of housework, and a bit of craftwork.  But, I also have my craft workshops for dementia in my diary that I attend and love because it gives me inspiration, gives me a place to be with other inspiring people living with dementia.