ChronicallyMe

I’ve finally realised what my disability is.  Some people have disabilities that are easy to spot, name, describe.  CFS is one of those disabling conditions that is more difficult to pin down.  I have a host of symptoms, my condition is variable over time and my need for assistance is sometimes preventative (using a wheelchair to avoid triggering symptoms and worsening of general condition).

It makes getting assistance, claiming benefits and getting a blue badge for parking very difficult for many sufferers.

Today, after months of not knowing quite how I was disabled it came to me.  My disability is my lack of energy.  Some people have a lack of walking, lack of sight, lack of mental capacity.  I have a lack of energy.  Even on a day when I am seemingly “normal” and able that lack of energy is still there.  I do not have the reserves of other people.

Energy, or lack of it, or being without reserves of it - that is my disability.

It sounds kind of obvious now!

I was reading in Katrina’s Bernes book last night about one diagnostic test for CFS. 

There are many so if you think you have it please read up - this one test is not itself a singluarly diagnostic indication of CFS!  That’s the small print sorted.

This one was “fun” enough to try at home.  In fact there were two I tried from the following category:

Difficulty with cognitive functioning

- serial 7’s (counting backward from a 100 by 7’s)

- spelling words backwards

I started with the counting.  I asked everyone in the room in turn to count backward from 100 in 7’s.  I thought this was kind of cheating as by the time it was my turn I would have heard the answers!  They all did it easily though got a little slower past the forties.

When it got to my turn I said “100,  93, … … … … …”. Oh dear.  I knew I could break 7 into a 3 and a 4 and that would make it easier to find the next number … “so take the 3 off 93 to give me 90 … them take … oh … what’s the other bit I need to take off? … erm it’s 3 and … oh what was the number I’m supposed to be counting back in … 100, 93, oh right yes - 7’s! So if I break 7 into two number to make it easier …”

I never made it past 93.  Not after 5 attempts and listening to everyone else doing it.  Interesting.

Well, I never was good with numbers - I’m better with words.

Spelling backwards!  “Test me! Test me!” I yelled.  And you know it was fascinating.  I could do it mostly as long as I thought very hard and thought a while before I started.  But if I just started spelling straight off (like my husband did when I tested him) I just wanted to spell out the second half of the word and then the first half - and I knew it was wrong but carried on anyway!

 So “resting” backwards for me was “i n g r e t s”.  “humble” was ” e b l … h u m”.  It was hilarious - for about two minutes.  And than it started to dawn on me this was for real - this is really my misfiring brain exposed.

I’ll do some now - saying the word to myself and then spelling out loud.  here’s what I got:

• discussion “ion cus dis”
• trapped “detrppa”
• alternative “ev …. iv …t …n a … lta”
• hopeless “ssepaho”
• understoof “doostoounde”

Oh dear.

It’s great in a way as it tells me more about what’s happening up there (or not happening).  Kind of scarey.  Kind of like a new party trick - one which I think only I find entertaining and only in short bursts until I catch up and realise this is quite serious.

Not that I need the tests to know I am impaired as I am having problems typing words the right way around forwards today!

I really am ready to rival the bear of little brain!

It’s hard to accept the impact my chronic illness and recent acceptance of disability has on everyone around me.  It’s a massive adjustment for me to make but for them also. 

My fear is that they will be distressed, upset, worry and my tendency has been to hide the true extent of my illness. 

I’m learning they fear:

• adding to my burden
• not getting things quite right (them being the healthy ones with the non fogged brains)
• that I won’t get better (which is possible) and then guilt I suppose for thinking I need to be better to be happy, fulfilled, lovable, whatever

Much as I am grieving for things in my life I have lost and things in my life that may never be - I think many of them are grieving too.  I have limitations and I can’t be there as much for people as once I was, I’m not really one to lean on day to day as it takes such a toll on my health, I can’t run about and get things done as before, I can’t pop out for a meal or a trip on a whim.

I’m learning to live again, and so are my family and my friends.  I am so very grateful to have people around me who want to make that change with me.  My blind assumption that they will love me less if I give less does them and me a great disservice.  I’m going to make mistakes along the way I’m sure and so are they - but I must keep communicating with them and trusting them. 

PS: The “or ignorant” in the heading of ths blog post refers to those who choose not to understand, not to learn, not to come with me.  There must be a better word - I’m sure I’ll discover it along the way.